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Malnutrition and Dementia

A popular adage goes, “We are what we eat.” A good diet is vital to everyone’s health and well-being. Cognitive function and nutrition are thought to have strong correlations. Aug 5 Scale

Ensuring that my mother was getting balanced nutritious meals and enough food to eat was a consistent worry of mine, even when she was residing in an assisted living facility. This effort was complicated because Mom also wore dentures. I had to replace them when we couldn’t find them. Eventually the new dentures also became lost.

In the later stage of the dementia, Mom became less able to chew. She was thin to begin with and was losing weight. Before I headed off to work on weekday mornings I tried to be at the facility to ensure Mom ate her breakfast. At the end of the day before going home after work, I re-visited to help feed her supper. The pureed food she was served not only looked unappetizing and unappealing, but tasted bland to me.

Dietary issues are influenced by diverse factors, from food availability and preparation, to appetite, to taste, to depression, to swallowing problems common in advanced dementia. These are only a few of the many difficulties that caregivers can face. Malnutrition may occur at any stage of dementia. It is important to detect it and try to remedy this as early as possible.

What is malnutrition?

Malnutrition is a lack of proper nutrition, caused by not having enough to eat or not eating enough of the right things. It can happen in people with dementia for a range of reasons including loss of appetite, forgetting to eat, or not being able to feed oneself. In some cases, the brain’s regulation of appetite and the person’s metabolism is actually disturbed because of the disease. Malnutrition comprises both overnutrition (excess food/calorie intake) and undernutrition (the depletion of body energy stores and loss of body mass.) Alzheimer’s International organization reported, “Undernutrition is particularly common among people with dementia in all world regions. It tends to be progressive, with weight loss often preceding the onset of dementia and then increasing in pace across the disease course.”

Practical Tips 

There are things you can try to help your loved one get sufficient daily nutrition. Here are some suggestions, based on the United Kingdom’s Alzheimer’s Society website.

  • Ask them to help you with meal preparation, if they are still able to do so. Help them maintain as much independence as possible. Involve them with various tasks such as washing vegetables, stirring the pot of soup, making a sandwich, setting the table, etc. Aug 5 kitchen-utensil-2462504_640
  • Serve five or six very small meals each day. A plate full of food can be overwhelming to them. Make food look and smell appealing. Use different tastes, colors, and smells.
  • Make mealtimes simple and relaxing. Ambience with soft music might help, but too much noise can be distracting.
  • Make sure dentures fit comfortably. Check for other dental problems such as sores in the mouth. These can be painful and interfere with their ability to eat.
  • Eat with your loved one, using mealtime as an opportunity for social stimulation. Describe and talk about the food that is being served.
  • Place the dish and a utensil about six inches back from the edge of the table so they are more likely to see them.
  • Set out only one utensil – either a fork or a spoon. You may have to cue them to start eating by spearing an item with the fork or placing the spoon under the food. aug 5 fork-1280701_640
  • If they have problems with coordination, and difficulty using cutlery, chop up the food into smaller pieces so they can use a spoon or their fingers.
  • Ensure that there is a visual contrast between the color of the food and the plate; e.g., rice pudding in a white bowl may be difficult to see.
  • Don’t assume that your loved one has finished their meal if they stop eating. They may just find it difficult to concentrate on the task. Gently encouraging them may allow them to finish the meal. You may have to prompt them by merely saying, “Eat your food,” or “Here are your favorite mashed potatoes and gravy.”
  • Don’t assume that when your loved one does not eat, that they do not want to eat. They may not be able to recognize food or be able to feed themselves any longer. Giving them a choice of food or using prompts and pictures of the food may help.
  • If your loved one is agitated or distressed, don’t put pressure on them to eat or drink. Wait until they have calmed down.
  • Provide nutritious snacks, such as fresh fruit, raw vegetables and cheese. Ensure that access to food and drinks are visible and available throughout the day so that they can eat and drink whenever they feel hungry or thirsty.
  • Difficulties in swallowing can lead to risk of aspiration. It is important that your loved one is alert, comfortable, and sitting up in a good position before feeding is attempted. The advice of an appropriate specialist (speech and language therapist, occupational or physiotherapist) may be needed.

Aug 5 soup-1706438_640Over time you may find that your loved one’s appetite declines or the taste of food doesn’t appeal to them. Sensory changes in sight and smell can impact their ability to enjoy food and mealtimes. Their likes and dislikes for food and drink may be quite dramatic and different from the ones they held for many years. They may also find it difficult to tell you what they want to eat. Try your best to determine what foods will deliver the most nutrients. If nothing seems to be working, consult a nutritionist for suggestions.

Should you give your loved one vitamins or dietary supplements? Check with their doctor before doing so. Some vitamins and supplements interfere with medicines your loved one may be taking.

If you are concerned about the nutrition needs of your loved one, the Nestle Nutrition Institute provides caregivers of elderly persons a tool called “The Self Mini-MNA.” This is a nutrition screening and assessment tool used to identify if persons 65 and above are malnourished or at risk of malnutrition. You complete the six questions and share the results with a doctor to help guide the discussion about your loved one’s nutrition needs. It is available in ten different languages and there is even a free app for use with an I-phone. (http://www.mna-elderly.com/mna_forms.html). I have not used this tool nor do I advocate that you do, but I wanted you to know that this is available so you can judge for yourself how helpful it will be regarding your situation.

I wish you peace, patience, and joy in your caregiving today and every day!

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The National Institute on Aging has a handout on healthy nutrition that you can download: https://www.nia.nih.gov/alzheimers/publication/healthy-eating.

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The Alzheimer’s Association website has detailed information regarding nutrition: https://www.alz.org/care/alzheimers-food-eating.asp#minimize.

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The Social Care Institute or Excellence (SCIE) has an article on “Activities for People with Dementia based around Food:” http://www.scie.org.uk/dementia/living-with-dementia/eating-well/activities-around-food.asp.

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In this brief video, Teepa Snow, noted dementia care trainer and advocate, describes visual processing problems that might affect persons with dementia getting proper nutrition: https://youtu.be/KGhPkV2roVc.

Re-Imagine Dementia

In his 1971 best-selling solo, “Imagine,” John Lennon encourages his listeners to imagine a world at peace without barriers, borders, or divisions. I attended the Dementia Action Alliance (DAA) Conference held in Atlanta June 25-27. The theme was “Re-Imagine Life with Dementia.” This motto set the tone for the workshops, interactive learning sessions, and special interest groups.

DAA Conference Button

DAA Conference Button

I was particularly moved by the Monday morning plenary panel discussion. The five panelists are active advocates and either Advisory Council Members or Board Members of the DAA. All are living with a diagnosis of some form of neurodegenerative disorder. They spoke from the heart about their day-to-day experiences. In the hope that it opens your mind and heart as it did mine, I’d like to share their answers and discussion to three of several main questions posed by the commentator, Dr. G. Allen Power.

Questions: How do you live with a chronic disability? What are your biggest challenges?

Brian LeBlanc, diagnosed with younger-onset Alzheimer’s in 2014, explained that there are many hurdles to overcome. There are zigs and zags in an hour, a day, a week as he often can’t remember how to do things. He asked the audience to picture themselves driving down a road and encountering a thick fog. You put on the brakes and creep through. Then you may go another five miles or so until you hit another fog bank. He goes through this on a daily basis, sometimes twenty or thirty times. There are days when the “fog” lasts all day.

Paulan Gordon, living with vascular dementia, noted that her loss was progressive. She went through the grieving process each time she was at a point of not being able to do some things any more, like driving, cooking, her hobby of reading novels. She felt isolated until she finally got to the point of acceptance. She found a sense of purpose as a mentor and a whole new world opened up for her.

Robert Bowles, a pharmacist for forty-two years, felt like “a convicted felon.” He came to the realization after his diagnosis of dementia with Lewy bodies (DLB) that he had two choices: to give up or to live. He decided to become a mentor for dementia cafes and encourage others. “My diagnosis simply gave me a different venue to do the things that I had tried to do all my life – to make a difference.”

Phyllis Fehr mentioned that she was a nurse. In 2010, at age 54, Phyllis received a diagnosis of mixed dementia in the form of early onset Alzheimer’s and Lewy body dementia in 2012. She had to grow to re-trust herself. She knew that she had to make a difference and so joined advocacy groups. The support of her family has made a big difference. Phyllis hopes that her grandchildren will educate their peers about the disease.

Susan Suchan has fronto-temporal disorder/primary progressive aphasia (FTD/PPA). She explained that it feels at times like she is walking in tar – as the tar gets thicker, communication becomes more problematic for her. She worries that others will not understand her.

Question: What was your experience when you received your diagnosis?

Brian reported that the doctor never looked at him or his wife. She asked, “Does he have Alzheimer’s?” The doctor paused and then said that Brian had early onset dementia. The couple sat there for two minutes crying before the doctor said, “I’ll be right back,” and left the room. When he came back to them, he gave Brian a prescription for Aricept and Namenda and told them to come back in three months. He didn’t have anything else to offer but a prescription. Brian was 54 at the time. (Younger-onset Alzheimer’s is also known as early onset Alzheimer’s.)

Phyllis knew something was wrong throughout three years of waiting and roadblocks. Then after testing, the neurologist looked at her husband and said, “She’s got Alzheimer’s, but is doing well. Come back when she can’t dress herself.” She eventually found a neurologist who was supportive and put her on a medication patch that helped her. Phyllis wants to educate doctors how to give a diagnosis.

Robert noted that one of his daughters diagnosed something was wrong with him two years’ prior to the “official” diagnosis of dementia with Lewy bodies (DLB). He went through eighteen months of hell and depression.  Robert told the audience that it is important to find a doctor who will listen to you about your symptoms and not rush to diagnosis. Like so many others with this disease, Robert received a number of incorrect diagnoses ranging from depression, to heart disease, to Parkinson’s disease before he finally heard the words “Lewy body dementia.” DLB symptoms are similar to those of Parkinson’s disease.

Susan knew something was wrong when she began experiencing balance problems and was frequently falling over. She realized she had to get help when she felt “trapped and lost” inside a shower stall. She consulted with a general practitioner who began tests. Susan was enthralled with the testing process, ruling out what she didn’t have. The audience laughed when she said she was fascinated that she didn’t have syphilis. However, she was anxious during the testing process for fear that they would tell her she was psychotic or schizophrenic. Her diagnosis came back as fronto-temporal dementia. A doctor told her that he was so sorry she had a pacemaker, that she would consequently live longer than she would want to.

Paulan reported that it was her daughter who documented her symptoms and took the list to a psychiatrist. This doctor diagnosed that Paulan was suffering from depression and anxiety. Following more extensive testing, the doctor handed her a fourteen-page report and coldly told her, “Here it is.” She wrote an e-book about her experiences. It is available on Amazon.

Each panelist spoke of the importance of finding meaning and purpose in their everyday life. They did not allow dementia to define who they are. In fact, for many of them, having dementia brought about a higher purpose. It was clear to me that all of them want to be seen as “whole” persons. In their own ways, they have learned to thrive. They look for opportunities to share their experiences with others in the hope that talking about dementia will change people’s misconceptions.

July 22Reimagining dementiaCan we re-imagine dementia? Robert Bowles can: “I dream of the time when there is no stigma about having dementia. I dream of better education and understanding about dementia for care partners. Individuals with dementia can still do lots of things. We need support to find our new purpose and develop strategies for living with our condition well.” (Taken from DAA’s website)

This is the challenge for our society– that a diagnosis of dementia not be a “death sentence.” It means inclusion and reasonable accommodations on the job for employees, in housing, and medical care. It requires advocacy and collaboration in our communities, our businesses, our churches, our neighborhoods. How can we re-imagine dementia in our own families and homes?

Here are core principles that the Dementia Action Alliance offers to get us started. These were posted by Deborah Shouse on DAA’s website:

Person-Centered Dementia Values and Principles

  • I am a person living with dementia. Spend time getting to know me and relating to me as a person with a unique background, life history, interests and capabilities.
  • Help me stay connected to what is important to me. Although aspects of my personhood may become increasingly hidden, I am still here.
  • A reciprocal relationship is important to me. Autonomy, choices, dignity, privacy, self-determination are fundamental to my well-being.
  • Support my holistic emotional, social, physical, cultural, sexual, and spiritual dimensions.
  • Promote my personal growth and development.  Help me continue to experience purpose, meaning, relationships and enjoyment in my daily life.
  • Partner with me, utilize my strengths, and provide the right amount of support and opportunities I need to achieve my goals.
  • Some dementia symptoms may interfere with my communication. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.

I hope I’ve done justice to the personal stories that the five panel members willingly shared during the DAA conference. It is also my hope that, in the not too distant future, John Lennon’s lyrics will ring true throughout the world for those living with dementia and their care partners.

“You may say I’m a dreamer

But I’m not the only one.

I hope some day you’ll join us

And the world will live as one.”

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Check out the Dementia Action Alliance’s (DAA) website to find out what you can do to advocate for persons living with dementia by going to: http://daanow.org/what-you-can-do/.

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Listen to Susan Suchan, one of the panelists, share her dreams in this three minute YouTube video: https://www.youtube.com/watch?v=U5qWuHMi0Sg.

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Paulan Gordon describes her symptoms of vascular dementia in this five-minute “Dementia Mentors” video: https://vimeo.com/111343974.

To buy the Kindle version of Paulan Gordon’s book, Vascular Dementia, An Inside Perspective, go here: https://www.amazon.com/Vascular-Dementia-Inside-Perspective-Paulan-ebook/dp/B01CR8UIDG.

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I’m eager to hear your thoughts about how you “re-imagine” dementia. You can e-mail me at: Vicki@CaregiverFamilies.com. Thank you!

 

When the Going Gets Tough – Tips for Caregiver Resiliency

There were times during the three years when I cared for my mother when I felt utterly helpless. July 8 dandelion-729693_640Most of those were times when I could see that she was suffering from an illness or was in pain recovering from a broken bone. I knew I had to remain strong for her.

Taking care of a loved one with dementia may be one of the most difficult challenges you encounter in life, especially as their health declines and they require more care. There will inevitably be setbacks and struggles along the way. Resilient caregivers let themselves become transformed by their experiences and develop strengths and abilities they didn’t know possible. I was one of them.

“Resilience is the process of successfully adapting to difficult or challenging life experiences. Resilient people overcome adversity, bounce back from setbacks, and can thrive under extreme, ongoing pressure without acting in dysfunctional or harmful ways,” writes Dr. Al Siebert, Ph.D., a researcher and author. He studied this topic for over fifty years. Dr. Siebert believed that everyone is born with a unique combination of inborn abilities to develop resiliency to handle life’s difficulties.

I’d like to share some of what I learned in the process of developing caregiver resiliency, together with insights drawn from research, especially from Dr. Siebert’s recommendations:

  • Find meaning, purpose, and value in difficult circumstances. Put aside the useless and debilitating “why me” thoughts. Instead, reflect on such useful questions as: “Is there anything good about this experience for me? How is this changing me?”
  •  Constantly learn from the experience. Wisdom and new strengths do not come from adversity itself, but from attempting to make sense of what one is going through. Ask yourself: “What is the lesson here? What can I learn from this?”
  • Accept and embrace what life has handed you. No one would wish this disease on their worst enemy. If you don’t truly want to be in the caregiving role doing what you are doing, you will more likely become psychologically drained and exhausted.
  • Maintain a playful, curious spirit. Enjoy things as children do. Experiment. Laugh. Be curious. Even though Alzheimer’s and other forms of dementia are no laughing matters, a dose of humor is good from time to time.
  • Adapt easily. Try to be as non-judgmental and emotionally flexible as possible. You can be both strong and gentle, sensitive and tough, logical and intuitive, serious and playful.
  • Try to maintain a strong positive self-concept, self-confidence, and solid self-esteem. This may be difficult when family members or friends feel you are not doing enough or criticize the care you provide.

    Photo by Fr. Tom Dynetius

    Photo by Fr. Tom Dynetius

  • Maintain good friendships, loving relationships. Lonely people are more vulnerable to distressing conditions. Find outlets and persons to share your feelings who will be supportive. If you don’t have family or friends to whom you can express your emotions, seek a professional counselor or group who can be your support.
  • Express feelings honestly. Optimistic individuals tend to have better health, are more stress resistant and persist longer. Learn to be aware of the cues that trigger a negative stress response. Choose to suppress feelings when you believe that is best to do. Release emotions like anger and frustration in a positive, creative way such as through art, music, journaling, etc.
  • Develop open-minded empathy. Try to see things through the perspectives of others. Ask: “What is it like to be them? What is legitimate about what they feel, say, and do?”
  • Question authority. Don’t be afraid to ask questions about medications or treatment plans. Keep the discussion and dialogue going with medical professionals and researchers in your community. You can be an advocate for your loved one, as you ask the questions they can’t ask anymore.
  • Develop a talent for serendipity. Convert a difficult situation that could be emotionally and physically toxic into a blessing in disguise.
  • Learn all you can about the disease and the stages that your loved one might endure. Poet and author Maya Angelou has a helpful hint in this regard: “Do the best you can until you know better. Then when you know better, do better.”

Resilient caregivers let themselves be transformed by their experiences. You have it in you to determine whether you will emerge from the caregiving experience exhausted and bitter, or strengthened and better for it.

For me, being a caregiver was a pathway to new levels of grace, courage, creativity, and love. As I write in my memoir, “Please share with others what you have learned, as that is the best way you support and lighten others’ burdens, and, in turn, feel connected to those in similar situations.” (Pages 112-113) Here is an affirmation to write out and put on your mirror to remind yourself daily: “Always remember, you are braver than you believe, stronger than you seem, smarter than you think, and twice as wonderful as you ever imagined.”

July 8 Resilience

I wish you peace, patience, compassion, and joy in your caregiving today and every day!

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Take a look at this checklist designed by Dr. Siebert for professional caregivers and emergency care workers: http://www.survivorguidelines.org/articles/sieb15caregiver.html.

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The AARP Foundation has a nineteen-page document available to download. “Prepare to Care, A Planning Guide for Families,” provides a comprehensive planning tool so that you are prepared to take action when it is needed. To download it, go to: https://assets.aarp.org/www.aarp.org_/articles/foundation/aa66r2_care.pdf.

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The website, AgingCare.com, collected stories from caregivers that they shared in a recent post. I hope you get a good laugh to tickle your funny bone:  https://www.agingcare.com/Articles/Top-caregiver-stories-143989.htm.

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Ted McDermott has dementia but loves to sing and remembers the lyrics to every song her learned. His son found a way to bring Ted happiness and a sense of purpose by filming his father singing in the car. Click here to hear Ted sing, “Lonely Is the Man Without Love:” https://youtu.be/-zZAAY85JQg?list=RDYbw9Y6FCkF4.

Why Hydration Is So Important

Not getting enough fluids can become problematic, not only in the summer but all year round. Becoming slightly dehydrated can have an effect on mood, memory, and attention, according to research conducted at UK Swansea University. Dehydration can pose serious health problems for everyone, but especially for older adults and persons with dementia. 

As with all medical advice, please consult your physician for your individual situation. The information here is for educational purposes only.

What is dehydration?

Dehydration happens when your body does not have the amount of water or fluids it needs in order to carry out its normal functions. Fluids are lost when we breathe, sweat, urinate, have bowel movements, and vomit.

Water makes up about two-thirds of our bodies. It lubricates our joints and eyes, it facilitates proper digestion, it keeps our skin healthy. Water lessens the risk of constipation, as it helps move food waste through our intestines and ultimately out of our body. Dehydration may lead to loss of muscle tone, slow metabolism, increased toxicity, chronic constipation, and in extreme cases to organ failure. Inadequate fluid or water can also cause kidney stones, while adding stress to the kidney organ. Severe dehydration is a medical emergency and needs to be treated immediately.

Aging and dehydration

Aging causes people to lose their sense of thirst and their kidney function is often somewhat diminished. “From a physiological standpoint, as aging occurs, the water content of our bodies decreases,” says Kelly O’Connor, RD, LDN, CDE, of Mercy Medical Center in Baltimore. “Research indicates the total body water content of a 75- to 80-year-old person is nearly 50% less than a young person. For some reason not yet clear, the decline in water content is even greater in elderly women.” Certain medications, like diuretics, antihistamines, blood pressure drugs, antipsychotics and corticosteroids, as well as medical conditions can also affect the elderly’s ability to retain fluids.

According to BBC News, research indicates that one in five seniors is not getting enough water/fluids on a daily basis. This same research also notes that persons who are living with dementia are even more at risk. They have a six-fold increased risk of dehydration. They may forget to eat and drink, not know when they are thirsty, may not be able to get beverages by themselves, or may have swallowing difficulties in the advanced stages. Dehydration is also a factor in the occurrence of urinary tract infection (UTIs).

What are the signs of dehydration?

Signs of mild or moderate dehydration include:

  • Thirst
  • Dry or sticky mouth
  • Dizziness
  • Not peeing very much
  • Dark yellow urine
  • Dry, cool skin, headache,
  • Muscle cramps

Signs of severe dehydration that may require emergency treatment include:

  • Extreme thirst
  • Not urinating
  • Very dark or orange-colored urine
  • Very dry skin
  • Rapid heart rate
  • Drowsiness
  • Confusion or irritability
  • Delirium
  • Rapid breathing
  • Fainting or unconsciousness

Two quick tests to check for dehydration

The website, EverydayHealth.com, indicates that there are two simple ways to check for possible dehydration.

  1. Skin test. Use two fingers to grab a roll of skin on the back of your hand between where your watch sits and where your fingers start. Pull the skin up to about a half to one centimeter high. Then let the skin go. It should spring back to its normal position in less than a couple of seconds. If the skin bounces back slowly, it may be that you are dehydrated. (This test is not foolproof, however.)
  2. Checking urine color. If you are well-hydrated, your urine will be mostly clear with a tinge of yellow color. When your body is about 3% dehydrated, the color will be noticeably yellow. When your body is more than 5% dehydrated, urine will appear orange.

Prevention is key

June 17 cold-water-1431859_640The best way to prevent dehydration is to consume an adequate amount of fluids during the day. Studies have shown that elderly adults who drink five 8-ounce glasses of water per day experience lower rates of fatal coronary heart disease. If your loved one is taking medication that requires it to be taken with water, it is critical to do so.

Drinking water at room temperature is recommended for quicker absorption, but in the summer, your loved one may prefer a cool drink. Water flavored with citrus or other fruits, as well as sparkling water are options to try. Coffee and tea act as diuretics, so avoid drinking a lot of these. Avoid alcohol and caffeinated drinks if the person is dehydrated. If your loved one has difficulty swallowing, try pulpy orange juice or prune juice.

About 20% of our fluid intake comes the food we eat. Eating the following foods which have a high water content will help with fluid retention. Strive to include one or two of these at each meal:

  • Vegetables: tomatoes, cucumbers, zucchini, lettuce, celery, cooked asparagus, raw or cooked broccoli, spinach, carrots, red bell peppers
  • Fresh Fruits: watermelon, pineapple, cantaloupe, grapes, strawberries, honeydew melon, papaya, apples
  • Soups: chicken or beef consommé or broths

Tips to help keep your loved one hydrated

  • Create a schedule for daily intake of fluids.
  • If your loved one has limited coordination or dexterity, and struggles to drink from a cup, serve drinks in a two-handled cup with a sturdy base.
  • Provide a variety of choices of fluids in easy-to-drink glasses; e.g. fresh lemonade, Gatorade, water with citrus, herbal teas without caffeine.
  • Make a spritzer by pouring a half cup of club soda or seltzer water to a half cup of desired fruit juice. Stir in plenty of ice.
  • Leave “kid-size” water bottles near where they sit and at the bedside.
  • Offer small amounts of water with medication unless more is required to be taken with the particular medication.
  • Prepare Knox unflavored gelatin with orange juice for a “natural” jello.
  • Prepare popsicles with fruit juice for a summer treat.
  • Keep a small bottle of water in the car for sips while traveling to and from doctor visits and while on errands.

Lastly, make sure that you also take care of yourself and get plenty to drink throughout the day. Your loved one depends on you to stay healthy and hydrated.

I wish you peace, patience, and joy in your caregiving today and every day!

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The National Institute on Aging has a helpful tip sheet on hydration, “Drinking Enough Fluids.” Check it out here: https://go4life.nia.nih.gov/tip-sheets/drinking-enough-fluids.

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For several more ideas to prevent dehydration, these come from the Alzheimer’s Association of Western and Central Washington State Chapter: http://www.alz.org/alzwa/documents/Techniques_for_Prevention_of_Dehydration.pdf.

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The website, “Eating Well.com,” has a slideshow, “How Much Water to Drink? Eight Water Facts and Questions Answered:”  http://www.eatingwell.com/nutrition_health/nutrition_news_information/how_much_water_to_drink.

What’s in a Name?

Do you at times wrestle with the questions “Who am I really?” and “What am I doing with my life?” A caregiver’s personal identity may become overshadowed by the loved one with dementia as the disease progresses.  

In speaking to caregivers, some have shared that they feel  they have lost their personal identities. Their lives became so totally focused on their loved ones, that when the person dies, they are at a loss as to who they are and how to move on with their own lives.

When I was in college I loved studying psychology. I found the writings of Dr. Erik Erikson on the concept of core identity fascinating. In retrospect, I believe I was trying at that time to come to grips with my own sense of identity and purpose in life.

Erikson proposed a psychoanalytical theory of human development comprising eight stages from infancy to adulthood. “According to Erikson, the ego develops as it successfully resolves crises that are distinctly social in nature. These involve establishing a sense of trust in others, developing a sense of identity in society, and helping the next generation prepare for the future,” writes Saul McLeod.*

During major milestones and crisis situations in our lives, I think we wrestle with identity questions. The answers to these may change significantly over the course of our lifetime. Being a caregiver for my mother became a part of my identity when I was in my mid-fifties. In hindsight, I now realize what a major milestone it was in my life, and how this role helped fashion who I am today.

My friend and mentor, Merle Stern, composed the following meditation to help caregivers reflect on the basics of self-identity – our name.

Find a place and a time when you can quietly follow this meditation. Sit comfortably and gently close your eyes. Become aware, as you close your eyes, of the darkness replacing the light.

Listen to the sound that emanates from silence. Become aware of the sounds coming from the vibrations of your body when you are at peace; when you are angry; when you feel resentful; when you have a heavy heart; when you feel impatient; when you are singing; when you are crying; when you are laughing; when you are engaged in an argument; when you are dancing; when you are walking; etc.

Now take a few moments to reflect on your name. How it has come to define you, influence you, shape your identity? Take a few moments to reflect how you have evolved over the years and are still in the process of evolving.

What is the history surrounding your name? Who gave you your name? Try to imagine yourself as a baby and hearing your name being called by the people who surrounded you at that particular time in life. How would you have felt as a baby hearing your name being called?

When you think of your name, what story, memory, or experience flows out of it? How are your story, memory, or experience and your name interconnected?

How has your name grown with you over time: childhood, adolescence, adulthood, family relationships, different relationships along your life’s journey?

Identify some major life tasks that hinge on using your name, for example, when you went for your driver’s license, signing your name to a lease or mortgage, signing a marriage license, etc. How are these defining you?

What traits and values are important to you? What makes you different from any other person?

Lastly, gently close your eyes again and become aware of your breath, your body. Feel energy emanating from your body as you slowly say your name in a gentle, loving way. Feel the energy emanating, detoxifying any negative feelings that emerge physically, emotionally, and mentally. Let a sense of peace and contentment surround you.

Take a few minutes now to write out what you have experienced in this reflection on your name.

I hope this meditation helps affirm who you are, and that what you are doing as a caregiver has meaning and purpose. Thich Nhat Hanh, a Buddhist monk who was exiled from Vietnam, wrote a book, Going Home, in which he discusses what it means to be human: “Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.”

Keep in contact with others for respite and support. I encourage you to regularly visit a support group in your local community. Support groups can offer a safe environment to express your struggles, anxieties and fears. They can offer help in reclaiming your identity if you feel lost at times in the caregiving role.

As Erik Erikson puts it, “The more you know yourself, the more patience you have for what you see in others.” Every bit of self-care and self-understanding improves your ability to care for your loved one.

I wish you peace, patience, and joy in your caregiving today and every day!
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If you found this meditation helpful, I hope you will share it with family and friends. Please remember to credit Merle Stern and this website. Thank you!

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To read the full article about Erik Erikson by Saul McLeod, go to: https://www.simplypsychology.org/Erik-Erikson.html.

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Lizzie Velasquez is a motivational speaker, not a caregiver, but she gives wonderful insights in this TED talk about “What defines who you are as a person?” Watch it here: https://youtu.be/QzPbY9ufnQY.

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To find a support program near you, check out the Alzheimer’s Association website: http://www.alz.org/care/alzheimers-dementia-support-groups.asp#chapter.

 

 

Dysphagia and Dementia

Dysphagia (dis-FAY-juh) is a medical term for a swallowing disorder. According to the National Institutes of Health, swallowing problems occur in about 45% of those have been diagnosed with Alzheimer’s and other dementias. It can occur in a person with moderate to advanced dementia.  The main risk and danger is that the person who suffers from this disorder may aspirate or inhale food or liquid into the airway and lungs, thus causing pneumonia. There is also the danger of dehydration or malnutrition with the lack of sufficient intake of liquids and food.  May 20 carrot soup-482354_640

Eating/Swallowing Process

Swallowing is a complex function involving over fifty pairs of muscles and numerous nerves. Swallowing problems are often the first indicator that dementia has entered the moderate stage of the disease. The American Speech-Language-Hearing-Association (ASHA) notes that dysphagia can occur at different stages in the eating/swallowing process:

  • Oral phase – sucking, chewing, and moving food or liquid into the throat.
  • Pharyngeal phase – starting the swallowing reflex, squeezing food down the throat, and closing off the airway to prevent food or liquid from entering the airway (aspiration) or to prevent choking.
  • Esophageal phase – relaxing and tightening the openings at the top and bottom of the feeding tube in the throat (esophagus) and squeezing food through the esophagus into the stomach.
NICHD Swallowing Chart

NICHD Swallowing Chart

Dysphagia Symptoms

Caregivers can help prevent serious complications by identifying the early stages at which swallowing problems begin. Each person with this swallowing disorder is different, but some signs and symptoms may include:

  • coughing during or right after eating or drinking
  • wet or gurgly sounding voice during or after eating or drinking
  • extra effort or time needed to chew or swallow
  • food or liquid leaking from the mouth or getting stuck in the mouth
  • chest congestion after eating
  • weight loss or dehydration from not being able to eat enough.

If any of these symptoms are present, to prevent pneumonia, consult with your loved one’s physician as soon as possible. They will likely give you a referral to a specialist such as a speech or language therapist to conduct a swallowing assessment.

Making Modifications

As the dementia progresses, you may need to make modifications to foods and liquids in order for your loved one to eat and drink safely. Here are some suggestions taken from the National Institute on Aging that might help:

  1. Alternate hot and cold foods to help trigger a swallow. Cold drinks are also easier to swallow than hot drinks.
  2. Cut the food into small pieces and make it soft enough to eat.
  3. Offer soft foods, such as ice cream, protein milk shakes, yogurt, soups, applesauce, gelatin, or custard.
  4. Thin liquids, like coffee, tea, water, or broth, are hardest to swallow. Buy Thick-It to add to liquids to make them thicker. You can purchase it at most pharmacies.
  5. Don’t use a straw; it may cause more swallowing problems. Instead, have the person drink small sips from a cup. (Check out the Teepa Snow video below.)
  6. Limit the amount of milk the person drinks if it tends to catch in the throat.
  7. Sweet taste receptors remain intact through the end stage of dementia. Persons at this stage usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods.
  8. Don’t hurry your loved one. They may need extra time to chew and swallow each mouthful before taking another bite.
  9. Position your loved one in an upright, sitting position, with their neck forward and chin down when swallowing. Don’t feed them if they are drowsy or lying down.
  10. In the later stages, you may have to gently stroke their neck in a downward motion and say, “swallow” to remind them to swallow.
  11. If your loved one is on medication, find out if their pills can be crushed or taken in liquid form.

Mealtimes will not always be easy, but it helps to make these as pleasant and enjoyable as possible. There will be times when your loved one will not be hungry when you’re ready to serve food. Or they may not feel like eating much at that time but get hungry at other times. In the later stages of the disease, many people lose interest in food. Consult with the doctor if they are losing weight and ask what supplements, if any, to use.

I wish you peace, patience, and joy in your caregiving today and every day!

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For more detailed information regarding dysphagia, check the National Institutes of Health website: https://www.nidcd.nih.gov/health/dysphagia.

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The Alzheimer Association has recommendations regarding late-stage Alzheimer’s caregiving that you might find helpful. Just click: https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp.

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Dementia care advocate and trainer Teepa Snow provides tips regarding feeding and drinking in late stage dementia patients. This is a “must see” brief video: https://youtu.be/sNPAESrllgQ.

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Morningside Ministries has a series of dementia training videos. This one is a helpful five-minute video on “Food Cuing for Appetite and Pleasure:” https://youtu.be/cqyxvHONG18.

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Laura Michael, a dysphagia specialist, has a BS degree in nutrition and owns Dysphagia Supplies Direct, an on-line store. Her website contains four instructional videos regarding the proper use of thickeners: http://www.dysphagiasupplies.com/videos.

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Check out these recipes from the NYU Steinhardt Iron Chef Dysphagia Challenge: https://speech.steinhardt.nyu.edu/dysphagia-cookbook/#recipes.

This article is about the benefits of xanthan gum thickeners vs. modified cornstarch thickeners. You can read it here: http://thickit.com/xanthan-gum-what-is-it-and-why-does-it-matter-for-those-with-dysphagia/.

Vascular Dementia or Vascular Cognitive Impairment

Healthwise, whatever affects you below your neck, affects you above your neck. What affects your heart, affects your brain. These were the opening words of a presenter at a workshop that I attended at a recent Alzheimer’s conference. The topic was vascular dementia.

Blood Clot

Blood Clot

Vascular dementia is the second most common type of dementia after Alzheimer’s disease in older adults. This form of dementia accounts for about ten to twenty percent of dementia cases. I have attempted to study as much as possible about this form of dementia because my mother was diagnosed with it. She was also diagnosed with Alzheimer’s disease. Mom had what is commonly called “mixed dementia.” I discovered that this condition is not so rare.

For several years before Mom’s diagnosis, she had experienced TIA’s, transient ischemic attacks, better known as “mini-strokes.”  TIA’s occur when blood flow to the brain is blocked or reduced for a short period of time. These “mini-strokes” are often so small that they may go unnoticed. TIA’s can serve as a warning sign that a major stroke may be coming. My family did not realize at the time that the TIA’s could also be a harbinger of vascular dementia.

Compared to Alzheimer’s and other forms of dementia, vascular dementia has different symptoms, a different rate of progression, and a different treatment approach. I have included several video resources at the end of this post. I hope you check them out.

Vascular dementia has specific names, based on the changes in the brain that cause it. The most common forms are:

  • Stroke-related dementia: a) multi-infarct dementia occurs after a series of small strokes; or b) post-stroke dementia after a stroke.
  • Small vessel disease or subcortical vascular dementia: changes in very small blood vessels deep within the brain.

Causes of Vascular Dementia

Problems start in the blood vessels that supply the brain with blood and oxygen. Damage to the brain resulting in brain cells dying off is caused by the lack of blood supply from bleeding, clotting, or narrowing of arteries.  These conditions happen for one of two reasons: 1) when there is a loss of elastin within the walls of large conducting arteries; or 2) when fibrin builds up within the micro-vessels. Elastin is a protein forming the main constituent of arteries. Elastin is partly responsible for the arteries’ flexibility. Fibrin is also a protein produced by our body in response to bleeding. Fibrin is the major component of a blood clot.   Blood Clot Cerebral Brain

Risk Factors

Aging is one factor contributing to vascular dementia. Risk is the highest after age 65, but vascular dementia can occur at any age. Persons over 65, like myself, start to experience weakening of our arteries with the loss of elastin within their walls, and a build-up of fibrin. Vascular dementia occurs in about 4.2% of all 70+ year olds. It is also more common in men, African Americans, and Asians. In Japan, vascular dementia accounts for about 50% of all dementias.

According to the U.S. Department of Health and Human Services, “Scientists believe that the same risk factors that lead to a stroke can lead to cognitive impairment and vascular dementia.” Not all strokes lead to dementia. However, according to the UC Gardner Neuroscience Institute, “…up to one-third of those who have a stroke will develop dementia within six months.” If an individual has a history of multiple strokes, their risk of developing vascular dementia increases over time with the number of strokes experienced. All stroke-like symptoms require medical care, the earlier the better.

Other health conditions that narrow blood vessels, such as high cholesterol, high blood pressure, and diabetes, can also lead to vascular dementia. Diabetes is a major risk factor.

Symptoms of Vascular Dementia

The early signs are cognitive, motor, behavior, and affective related, not so much in memory loss. The deterioration is in a stepwise decline, where stable periods are interrupted by sudden downward episodes. This is unlike Alzheimer’s disease which progresses in a more gradual decline. Symptoms can include:

  • An abrupt change in the person’s ability to think
  • Memory deficits, but can retrieve memories when given cues
  • Difficulty with executive functioning, logical reasoning, or multi-tasking
  • Problems concentrating, including short periods of sudden confusion
  • Difficulty with language where speech becomes less fluent
  • Gait disturbance, difficulty in their ability to walk, prone to falls
  • Motor impairment, especially fine motor coordination
  • Muscle weakness
  • Urinary incontinence
  • Mood changes such as depression, apathy, or anxiety
  • Inappropriate laughing or crying
  • Depression

Depending on which part of the brain is affected, the person might have paralysis or weakness of a limb. Some persons may exhibit changes in their personality. They become either more impatient, irritable, or angry, or more sweet or docile.

Preventative Measures and Control of Risk Factors

Currently, there is no cure for vascular dementia. Early detection and accurate diagnosis are important as vascular dementia is at least partially preventable. Here are things to do to help prevent it:

  • Stop smoking.
  • Get regular medical checkups and blood tests.
  • Exercise.
  • Eat a healthy diet.
  • Control the risk factors for a stroke. Looking at the health of your heart is critical. This involves getting an evaluation for heart disease. People with heart disease, hypertension, and heart arrhythmias are at an increased risk of stroke.
  • Since diabetes is a major risk factor, get your glucose under control.
  • Check for elevation in the “bad” types of cholesterol. Control high cholesterol.

According to the Alzheimer’s Society, “The drugs that are routinely prescribed for a person with Alzheimer’s disease do not have benefits for vascular dementia, and are not recommended for it. However, these drugs may be prescribed to treat mixed dementia.”

For a person with any form of dementia, it is important that they stay active and continue to do the things they enjoy. To help someone with vascular dementia cope with the cognitive symptoms, breaking down complex tasks into smaller steps will make it easier for them. Also keeping the home environment not too noisy or too busy makes it easier for them to concentrate. A regular daily routine is also most helpful. For the physical difficulties, especially after a stroke, the person might benefit from rehabilitation, physiotherapy, occupational therapy, or speech and language therapy.

As a caregiver, do your best to get as much information as you can if your loved one is diagnosed with vascular dementia. The more you know, the better prepared you will be. I wish I had understood this condition better at the time I was caring for my mother.

I wish you peace, patience, and joy in your caregiving today and every day!

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Information for this post was partially based on the keynote address, “The Dementia Prevention Initiative: A Personalized Approach to Reducing the Risk of Dementia,” March 17, 2017, given by neurologist James Galvin, MD, M.P.H., Director of the Institute for Healthy Aging and Lifespan Studies at Florida Atlantic University.

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This fifty second video shows how a stroke occurs: http://blausen.com/en/video/stroke/.

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This three-minute video from the Alzheimer Society gives a brief explanation of vascular dementia: https://youtu.be/GdkU5vCIpaU.

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Dr. Stephen Tai Chen, MD, a geriatric psychiatrist, presents a twenty-two minute UCLA health webinar on “Diagnosis and Management of Vascular Dementia” in this video: https://youtu.be/irCmHwD7Uug.

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Banish the Worry Gnome – A Reflection

In a previous blog post, I discussed the topic of worry and caregiving. I gave some tips for steps you can take as a caregiver to untangle yourself of needless unproductive worry. There is a wonderful Chinese proverb that advises us: “That the birds of worry and care fly over your head, this you cannot change; but that they build nests in your hair, this you can prevent.”  March 18 nest-918898_640

As a caregiver, you may be concerned that if you stop worrying, this is a signal that you do not care anymore. You may hear your inner voice saying, “Caring is providing care. My caring for people is an expression of love in my life. I worry because I care.” Your family and friends are calling you a “worry wart.” Can you shed this part of your personality? Rest assured, you can!

In this reflection composed by my mentor and friend, Merle Stern, we ask you to take a few minutes to explore, examine, and untangle caring from worrying. Find a few minutes in your busy schedule, along with a quiet space, and a journal close by to write your reflections.

When you feel ready to begin, gently close your eyes and focus on your breathing. When you breathe in, feel your body relax. Focus on your neck muscles, shoulder muscles, then all the muscles in your body. When you breathe out, feel the tension leave your neck, shoulders, your whole body. Let go of the struggle to control unwanted thoughts and feelings. Become aware of the present moment and your commitment to a change that is consistent with what you value most in life.

March 18 gnome-411125_640Gradually, begin to visualize the part of you that is worrying most of the time. Visualize that part of your personality as a gnome. For the time being, free yourself from worries by encapsulating them into that gnome. Send the gnome away for a while so that you can have some peace and quiet as you examine more carefully your list of worries.

Get a sense of what it feels like to be free from worrying. Are you feeling less tired, not dragged down? Are your physical and emotional energies starting to re-charge?

Now take a closer look at some of the areas that may be causing you to worry needlessly.

  • Is there a situation that needs to be addressed immediately or in the near future? Can you be proactive and productive? If so, identify what you might need to put into place to achieve the outcome you desire.
  • Is there a situation for which you are taking responsibility, but have no control? Is this a situation that needs to be accepted because you have no control over it?
  • What are the areas of your competency? What are some situations that you know you can handle if and when they occur? What are areas where you could use others’ help in handling?
  • What unproductive, needless worries will you leave encapsulated in the gnome whom you have banished?

As you bring your reflection to an end, gradually become aware of your physical surroundings, the sounds, and the light that has been shed on this area of darkness. Focus your awareness on your breathing. When you are ready, record whatever insights you have. How will these insights enable you to move forward in your life? What has been the value of this experience? How will you integrate this into your daily life?

If you are so inclined, draw a picture of your gnome, worry warts and all! When you begin to feel overwhelmed with worry and concern, take a look at this gnome, and banish him/her again.

I wish you peace, patience, and joy in your caregiving today and every day!

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Feel free to share this reflection with family and friends, but please credit Merle Stern as the author. I would love your feedback. You can reach me at: Vicki@Caregiverfamilies.com.

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Worrying vs. Caring

I recently traveled to Guatemala. At the end of one of our excursions, our tour guide handed each of us a goodbye gift. It was a small handcrafted pouch of “worry dolls.” He explained the legend surrounding this custom.

Worrydollcraft as featured on Etsy

Worrydollcraft as featured on Etsy

Many generations ago, the indigenous people from the Guatemalan highlands created these dolls as a remedy for worrying. Before going to sleep at night, a person would tell their worry to as many dolls as necessary. Then they would place these tiny dolls in a cloth pouch and put it under their pillow. The dolls take over worrying so that the person can then sleep peacefully through the night. In the morning the person awakens without the worries that the dolls took away.

There is a Swedish proverb: “Worry often gives a small thing a big shadow.” I used to be a “worry wart” in my teen years and early adulthood. My worries usually came from anticipating the worst that could happen regarding a situation. This was the stressful part – anticipation – and usually the worst never came about. Worry was really a drain on my body and spirit. The process of maturing taught me that worries don’t change the outcome of things.  As Corrie ten Boom wrote, “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”

One of my consistent worries while caring for my mother was what would happen to her if she were taken alone by ambulance from her assisted living facility to the hospital while I was at work. I describe this in my memoir, Elegy for Mom. This actually happened on several occasions. My worry was that she would not be able to describe what was wrong or the location of her pain. Consequently, the doctors wouldn’t know what to do to begin treatment. Each of those times when I arrived at the emergency room, Mom appeared calm. She seemed to know she was in a hospital. I was the frightened one – not Mom! I later found out that the nurse at Mom’s assisted living facility had given the medics a file folder containing all her health issues and medications to take along with Mom in the ambulance.

When you care for a loved one with dementia, I don’t believe you can ever be completely “worry-free.” There will be times when you will worry. You may even feel by worrying that you are doing something “useful.” Perhaps you are underestimating your ability to cope with the challenges of caring for a person with dementia. Worry can take a toll on your sleep, tax your immune system, drain your mental and physical energy, send your anxiety levels soaring, and turn into a cycle of self-perpetuating negative thinking.

Sometimes worry can be a good thing. For example, if there is an actual threat, it may spur you to take action or solve a problem. However, if you find yourself starting to become overwhelmed with worry, here are a few questions to ask yourself:

  • Is your worry productive or unproductive? Will it help you or hurt you?
  • Does worry limit you and cause you to panic or freeze from thinking clearly?
  • How much does worry interfere with your life?
  • Is the problem solvable rather than an imaginary “what if?”
Image courtesy of Stuart Miles

Image courtesy of Stuart Miles

Negative moods, like guilt and shame, even physical states like pain, tiredness, or fatigue can fuel worrying. Worry hinders rather than facilitates effective problem solving. It is not an alternative to coming up with practical ways to tackle a problem. Try these suggestions to resolve the matter:

  1. Talk about your worry to a close friend or family member. Getting it out often helps make it easier to see the real issue for what it is. A trusted family member or friend may help you find a more useful and practical perspective.
  2. Write it out. Make a worry list and then order them. Jot down what triggered the worry. What is the worst that can happen? You may start to see patterns.
  3. What is one small step you can take to start improving the situation? Can you come up with a Plan A, Plan B, or even a Plan C, if needed?
  4. Learn more about the issue. Perhaps reading about the disease, or discussing health issues with a doctor can ease your mind so that you have an idea if the situation is to be expected as part of the disease progression.
  5. Try to lift your mood if you begin to feel that worry is zapping you further. What can you do to make your life more pleasant?
  6. What early messages did you get about your capabilities? Give up the belief that worry will be the solution to the problem.
  7. Before your worries begin to overwhelm you, seek professional help.

Caregivers need all the physical, mental, and creative energies that they can muster. Save your energy for productive things, and try not to let worry drain you. Give yourself credit for challenges that you have overcome in the past. Have confidence in your ability to deal with the challenges that await you.

Get a good rest each evening in the knowledge that you did the best you could that day as a caregiver and you won’t need those worry dolls. Poet Ralph Waldo Emerson has these words of wisdom:

“Finish each day and be done with it,

you have done what you could.

Some blunders and absurdities no doubt crept in.

Forget them as soon as you can.

Tomorrow is a new day,

you shall begin it well and serenely.”

I wish you peace, patience, serenity, and joy in your caregiving today and every day!

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The Center for Clinical Interventions in Perth, Australia, has an educational module about “What? Me Worry?,”  an excellent detailed overview about worrying. Check it out here: http://www.cci.health.wa.gov.au/docs/GAD_2_2015_Worry.pdf.

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I composed a prayer based on a line from Psalm 40, to help alleviate worries. Check it out on the “Resource” section of my website: https://caregiverfamilies.com/inspiration/.

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Exercising Muscle Memory – Part 2

In Part 1, I introduced a person-centered approach to caring for a loved one with dementia. This approach is based on the philosophy of Dr. Maria Montessori: to treat the individual with respect, dignity, and helping them remain as independent as possible, for as long as possible. Feb 18 thumbnail_Braincartoonv2

It is a framework, designed to work with “muscle memory,” the type of procedural memory – the “how” of memory.

In this model, the activities of daily living, such as dressing, eating, personal hygiene, etc., are broken down into easy sequential steps. You provide the encouragement for your loved one to do these activities as much as they can. This process taps into their “muscle memory” so that they don’t lose their ability to do these simple tasks through lack of doing them.

Persons with dementia lose their ability to plan, initiate, and carry out daily activities as the disease progresses. In the early stages of illness, there may not be noticeable changes. For example, in dressing themselves, they may put on clothes that have spots and stains without realizing this. They can, however, still find their clothes and put them on in the order needed. In the middle stages, you may find that they wear the same clothes day after day, or mix colors and patterns that don’t match. They begin to have trouble buttoning buttons, or zipping zippers. In the late stages, they may put outer garments on first and undergarments on top, forgetting the proper order.

To explain how this person-centered Montessori approach works, here are a few examples using key principles mentioned in Part 1. Some organization, preparation, and patience is needed on your part as caregiver.

  1. CHOICE

Your loved one has been making choices all his/her life and needs to feel they have some control of their life. Depending on the stage of the dementia, if they can still make a selection of what clothes to wear, ask them to choose between two items. For example, would they like to wear the blue shirt or the white shirt? The black pants or the grey ones? Help make it easy for them to make a decision. You might also inform them that today is the day you go to church, or to a doctor’s appointment, or out to eat lunch. In these cases, they may want to dress up a little more than in everyday clothes.

  1. INDEPENDENCE

As caregiver, you provide the necessary encouragement your loved one requires to dress themselves. You might just need to lay out the pieces of clothing in the order they should be worn. If your loved one is in the middle stages, handing them one piece of clothing at a time may be all that is required. Prompt or cue them how to put their clothes on, button buttons, zip zippers, tie shoelaces. It may take a little extra time, but the important thing is that they do it themselves. Your patience is required here so that you aren’t tempted to take over to hurry up the process.

  1. DEMONSTRATE

As the dementia progresses, your loved one’s ability to process words will deteriorate. Showing how to do things in small steps is better than giving instructions. By using less language in your interaction, you help allow them to focus all their attention on what you are demonstrating, rather than trying to find the “right” words to respond to your questions. This also lessens their frustration as they try to imitate your actions.

On the few occasions when I helped my Mom get ready to retire at night, I stood beside her in the bathroom. Next, I gave her a warm, wet washcloth in one hand and the bar of soap in the other. Then, just rubbing my hands together, I pretended I was rubbing soap onto the washcloth. Mom responded by doing the same, washing then rinsing her face and hands. Feb 18 face cream-1327847_640After handing her the towel to dry, I brought out her favorite facial cream, “Oil of Olay.” Mom had used this toiletry product for years. Rubbing my cheek, as if to put on the cream, was a signal for Mom to do the same. It didn’t take many words – just demonstrating so that her “muscle memory” could kick in and take over.

  1. SEQUENCE

If you stop to think about it, a task as simple as brushing one’s teeth involves many steps to completion. Breaking down everyday tasks into their basic, simplest components allows your loved one to focus on one step at a time.  You want them to be successful in this task, so you may need to adjust the steps to match where they are in the disease process. Putting the toothbrush next to the tube of toothpaste on the counter may be all that is needed. In the middle stages, you may have to cue them to take off the cap, squeeze the toothpaste on the brush, wet the brush, brush up and down, rinse their mouth, etc.  In the later phase, you may even need to guide their hand as they brush their teeth, and hand them a glass of water or mouthwash to rinse. Watch so they don’t swallow the mouthwash thinking it’s something to drink.

  1. MEANINGFUL ACTIVITIES

This principle describes the introduction of activities and routines that are meaningful to our loved ones. These activities help activate their senses and stimulate their minds. To ensure success, take into account your loved one’s interests, hobbies, former occupation, likes and dislikes. The important thing is to try to plan activities where there is no right or wrong way or winners or losers. Here are a few examples:

  1. Heather O’Neil, from Yorkshire, UK, has a website, “Creative-Carer.com,” where she posts some of the therapeutic activities that she plans for her mother who was diagnosed with mixed dementia. Her mother Margaret was an artist. Each week, Heather organizes materials for an artistic activity such as card making, crepe paper flowers, etc. Her mother has won competition awards for her pieces and gives out many of her creations as gifts.
  2. Harry Urban has been living with Alzheimer’s for over thirteen years and doesn’t let his dementia get to him. His hobby is woodworking and he displays many of his creations on his Facebook page. He delights in challenging himself to carve difficult pieces.
  3. For a former fisherman, try giving him a tackle box with lures and flies to organize or the materials to make them.
  4. For a baseball fan, looking at or collecting Hall of Famer baseball cards might be enjoyable, or even just playing a game of catch.
  5. A golfer might like to practice putting golf balls on an indoor/outdoor putting mat.

Many dementia care facilities in the USA are incorporating Montessori principles. The benefits to following this person-centered approach are many but here are just a few:

  • An increase in self-esteem
  • An increase in motor skills
  • An increase in interaction
  • Stimulation of the senses
  • A sense of accomplishment
  • A reduction in anxiety.

One last recommendation – be flexible and willing to adapt to what your loved one is able to do on a certain day. What was of interest one day may not be engaging to them the next.

I wish you peace, patience, and joy in your caregiving today and every day!

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To visit the website and see photos of Heather O’Neil and her mother, go to: Creative-carer.com. Her Facebook page is www.facebook.com/CreativeCarer/.

Harry Urban’s Facebook page is www.facebook.com/Harry.Urban1/.

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To read about how Montessori methods are used with students and senior residents with mild dementia, click here: http://www.therobertsacademy.org/school/approach.html.

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Brookstone sells an indoor putting green mat for under $40.00. Check it out here: http://www.brookstone.com/pd/putting-mat-with-hazards/797547p.html.

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This 4-minute video, “Thelma’s Story,” shows the Montessori practice in use: https://youtu.be/lUfhr67oTA8

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Exercising Muscle Memory – Part 1

Practice — practice — practice! This was a kind of motto of mine as a young girl rehearsing for an upcoming piano recital. Little did I understand at the time that my music lessons and practice sessions were an effective way of developing “muscle memory.” Feb. 4 Braincartoon (2)

Wikipedia defines muscle memory as “… a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for the task, eventually allowing it to be performed without conscious effort.” Muscle memory works when you drive a car, ride a bike, eat, tie your shoelaces, type on a keyboard, play a musical instrument, etc.

I recently came across two websites that discuss ways to encourage persons with dementia to exercise their muscle memories and focus on what they still can do. Both sites describe a person-centered Montessori approach. Based upon successful methods that were used by Dr. Maria Montessori, this approach attempts to keep a person as independent for as long as possible by focusing on tasks and habits related to procedural memory.

Maria_Montessori in 1913To digress for a moment, Dr. Maria Montessori (1870-1952) became the first female doctor in Italy in the 19th century. She was a physician, educator, and innovator. She worked with children with intellectual disabilities and developed a method to teach them to read and write. By 1910, her philosophy and method of teaching and nurturing youngsters was applied to students in mainstream schools. The emphasis is placed on self-determination and self-realization. As Dr. Montessori puts it herself, “Never help a child with a task at which he feels he can succeed.” Her teaching methods are still in use today in Montessori schools all over the world.

How does all this apply to care of our loved ones?  Persons with Alzheimer’s and dementia are often confronted with what they can no longer do, such as routine activities of daily living. They may struggle with simple tasks like dressing themselves or brushing their teeth. The key principles of the Montessori method can give you, the caregiver, an understanding of how better to focus on your loved one’s capabilities, engaging them in meaningful interactions and helping them remain as independent for as long as possible.

Alzheimer’s Australia, an advocacy agency, in conjunction with Monash University in Melbourne, Victoria, has developed a wonderful resource, “Relate, Motivate, Appreciate,” that details this person-centered approach. (See link below.) Here is a summary of the twelve key Montessori principles of engagement, as listed in this resource:

  1.  The activity should have a sense of purpose and capture the person’s interest.
  2.  Always invite them to participate.
  3.  Offer a choice whenever possible.
  4.  Talk less. Demonstrate more.
  5.  Physical skills; focus on what they can do.
  6.  Match your speed with the person you are caring for. In other words, slow down!
  7.  Use visual hints, cues, or templates.
  8.  Give them something to hold.
  9.  Go from simple tasks to more complex ones.
  10.  Break the task down into steps. Make it easier to follow.
  11.  To end, ask, “Did you enjoy doing this?” and “Would you like to do this again?”
  12.  There is no right or wrong. Think engagement.

I wish I had been aware of this approach when I was caring for my mother. At times I felt it was hit and miss when trying to engage her and keep her active. Be flexible and willing to adapt to what your loved one is able to do on a daily basis, as each day may be different. I hope you will share your experiences of your attempts to help your loved one regain control of aspects of their life and retain their abilities for as long as possible.

In Part 2 of this topic (an upcoming blog), I will delve further into four of the principles listed above, and detail specific things you can do in helping your loved one exercise their memory muscle.

Oh, and by the way, I never became a world class pianist, but I still play the piano for my own enjoyment and relaxation, albeit this memory muscle is a little “stiff!”

I wish you peace, patience, and joy in your caregiving today and every day!    

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Here is the link to a 72-page booklet developed by Alzheimer’s Australia, in conjunction with Monash University: http://qualitydementiacare.org.au/wp-content/uploads/AlzheimersAustralia_Montessori_Resource_WEB.pdf.

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Another website that details the Montessori methods for dementia care is: http://keepingbusy.com/learning-center/montessori-principles-for-dementia/.

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The Dementia Action Alliance has a sixteen-minute video, “Person-Centered Matters, Making Life Better for Someone Living with Dementia.” This video highlights the positive aspects about helping people live fully with dementia, told through the stories of five people living with the condition at various stages. You can watch it by going to: https://www.youtube.com/watch?v=5R3idi0e1eg.

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A Reflection on the Language of Touch

A hug can provide solace. A gentle massage can soothe and calm. Holding hands can reassure. In short, “touch” can be a powerful “therapy” that comforts a loved one with dementia.

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Some of my best memories in caring for my mother center around sitting together on the porch of the assisted living facility, without saying much, but just gently stroking her hands and seeing her smile.

I realize that not all family members feel comfortable about touching or hugging their relatives. There can even be issues rooted in a fear or stigma that touching a person with dementia will result in “catching” the disease.

If you are caring for a loved one in your home, caregiving might inevitably involve touching intimate areas, like changing incontinent pads or panties, toileting, or bathing a relative of the opposite sex. How do you become comfortable with the vital role that “touch” plays?

The first step is to reflect on the nature of touch as one of our most basic human needs, no matter age or physical or mental condition. The second step might be in confronting your own reservations about touch. For a person with dementia, the need to be comforted and reassured by the loving, gentle touch of a hand or hug can be life-affirming, decreasing their feelings of anxiety, fear, or loneliness.

The reflection below was composed by Merle Stern, to guide in a deeper understanding of the importance of the gift of “touch” in your caregiving role. In her own words, Merle notes: “I remember many years ago, as though it was yesterday. I took the two week old baby from the arms of her mother and held her close to my heart. The synchronization of the baby’s heart beat with my own heart beat was a memorable experience, and at that moment I became aware of the power of touch.”

Jan 21 baby hugged cropped-1345736_640

To begin that inward journey of processing your personal experiences, you will need to withdraw to your sanctuary – that quiet place within you and surrounding you. Then, gently close your eyes and focus your awareness on your breathing. Experience the space around you and become at one with it.

Now, try to think of touching as a language: a language that speaks to the innermost sense of who we are; a language that has the potential to convey the depth of a relationship. The person whom you touch, and their response to your touch, has the ability to create a bond, and to build bridges that transcend words and invisible barriers. It simultaneously penetrates two different worlds.  

Take a moment now to gently stroke your arm. Feel the softness of your skin as your touch communicates gentleness and tenderness. Note how you are giving and receiving at the same time. After a few moments, and through the medium of your touch, try to communicate different issues; for example approval, objection, or whatever comes to your mind. Become aware of how and what you are feeling simultaneously, both as the transmitter and receiver of that touch.

Focus again on your breathing. After a few moments scan over some of your life’s experiences, making notes in your journal as you go along:

  •  The touch that conveys your joy and well being;
  •  The touch that conveys your appreciation/gratitude for help given by a stranger;
  •  You have not seen a person for a long time and you reach out with a spontaneous hug – a hug that enhances your bonding and friendship that transcends time and distance;
  •  The way you touched a child who came to you for comfort and solace;
  •  The touch that expresses “welcome,” and one that expresses “goodbye;”
  •  The difference in touch when you stroke a kitten or dog, or other pet animal;
  •  The touch that conveys your compassion, empathy, and understanding.

 Jan 21 grandma enbraces child-577494_640

Again, scan over your life and become aware of your own personal “touch history,” making notes in your journal as you go along:

 Visualize yourself as a baby, reaching out to touch your mother’s breast or comforting your teddy bear;

  •  As a young child, the experiences of being touched by your mother, father, brothers, sisters, aunts, uncles, and grandparents;
  •  As an adolescent and as an adult;
  •  As a parent to your child;
  •  As an adult child to your parent;
  •  As a spouse to your spouse.

Now reflect on your touch as a caregiver. Become aware that as you touch that person’s body, you are also touching his or her life. You invoke long forgotten memories of what once was and no longer is.

Throughout your caregiving, your touch conveys a variety of messages. Some of these messages include: your loved one is important; they are lovable; they do not need to be afraid; you are present with them on their journey.

Now, reflect on the possibility that the last touch in this person’s life may come from your hands. What would you like this last touch to convey, as you bid goodbye to your loved one who is transitioning to another realm?

Finally, take a look at your hands – the hands that will convey what words cannot. Feel your appreciation for your hands and the blessed gift of touch. Make a note in your journal of the value of this experience and how it can continue to enrich your life.

 hands-holding-together

Our experiences of bonding often center on the sense of touch and communicate much more than words ever could. The British-American anthropologist Ashley Montagu sums it up in his 1971 landmark book, Touching: The Human Significance of the Skin: “Touch conveys fondness, security, closeness, warmth, concern, and encouragement, and makes [older persons] feel an increased sense of trust and well-being.

I wish you peace, patience, and joy in your caregiving today and every day!

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Sincere thanks go to Merle Stern, my friend and mentor, who composed this reflection. Feel free to pass it on to family and friends, but please give credit to Merle and this website.

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Dave Otis, a licensed massage therapist, wrote easy directions for healthy self-massage exercises for hands, face, and neck. Check these out by going to: http://www.unh.edu/health-services/sites/unh.edu.health-services/files/media/PDF/Stress/SelfMassage.pdf.

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For a comprehensive article on “How Skilled Human Touch Can Transform Person-centered Dementia Care,” go here: https://www.nhqualitycampaign.org/files/Compassionate_Touch_White_Paper.pdf.

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My sister Marcia and I published a journal called My Blessings Journal. It can be a useful tool to introduce you to the joys of journal-keeping. To order a copy through my website click here: http://caregiverfamilies.com/book/.

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Alzheimer’s and the Senses Part Five: Touch

“To touch can be to give life,” said Renaissance painter, sculptor, architect and poet Michelangelo. I was privileged in 2014 to visit the Sistine Chapel in Rome and view Michelangelo’s fresco painting of “The Creation of Adam.” You may have seen this classic painting of God’s near-touching finger reaching out to bring “life” to Adam.

The scene is unforgettable! I wonder if Michelangelo knew that touch is the first sense developed by the body.

Michelangelo's "Creation of Adam"

Michelangelo’s “Creation of Adam”

Our sense of touch is a basic human need, a lifeline that can communicate love, safety, care, reassurance, and trust. Touch is not an emotion, but emotions are formed through the physical, psychological and spiritual effects that we experience through this unique sense. Persons with Alzheimer’s or other forms of dementia do not lose their capacity for human emotion or their recognition of a caring touch.

Compared to our scientific knowledge of the other senses, our understanding of the sense of touch, and in particular how it is processed in the brain, is limited. According to neurobiologist Dr. David Linden, “genes, cells and neural circuits involved in the sense of touch have been crucial to creating our unique human experience.” Yet, writes Dr. Linden, the body’s touch circuits are “a weird, complex and often counterintuitive system.”

How the Brain Processes Touch

Our sense of touch does not have a specific place on the body where it is located, for it is found all over the body in our skin. Our skin is the largest organ in the somatic sensory system. The somatic sensory system has nerve endings and receptors that help us feel when something comes into contact with our skin.

Chart of skin

Chart of skin

When the touch, pain or heat sensors in our skin are stimulated, they send electrical impulses to our neurons. The neurons then act as a relay team, passing the electrical pulse from neuron to neuron until it reaches our spinal cord. Our spinal cord then takes the signal and sends it to our brain to translate it.

Neuroscientists have discovered that there are two distinct but parallel pathways in the brain for processing “touch” information. The first pathway is in the region of the brain called the primary somatosensory cortex. This is the region that analyzes and processes information about the “facts” of a touch, such as vibration, pressure, texture, temperature and location.

The second pathway processes social and emotional information and activates brain regions associated with social bonding and our pleasure and pain centers.

Aging and Touch

Humans crave touch. Just as babies thrive and respond to being held, as we age our need for touch remains. Unfortunately, our sense of touch steadily deteriorates as we get older. Every year, starting at around age eighteen, we lose about one percent of our tactile sense. Some researchers explain that this could be the reason elderly people are so prone to falls – they get less tactile information from the soles of their feet when wearing shoes.

The Physical and Emotional Benefits of Touch

Research studies document physical and emotional health benefits of using “touch” in caring for a person with dementia. The physical benefits include:

  • Lowering of blood pressure
  • A decrease in pain
  • An improvement in mood
  • A decrease in stress-related cortisol
  • A decrease in heart rate
  • An increase in sensory awareness.

As to the emotional benefits, touch can communicate multiple positive emotions such as love, safety, care, reassurance, trust.  Hugs, holding hands, a caress, or other physical gestures of affection can ease your loved one’s mind, help them feel less isolated, decrease their anxiety. Studies have shown that a person giving a hug gets just as much benefit as the person being hugged. For a person with Alzheimer’s, compassionate touch is a language of the human heart.

How You Can Help

1.  Active Tactile Stimulation

The brain “feels,” so tactile stimuli is brain stimulation. The most sensitive parts of our body and those with the most nerve endings are our fingertips and mouth. Each of our fingertips has about 3,000 nerve receptors.

A person with dementia naturally gravitates toward tactile stimulation when they explore the fabric of their clothing or the smoothness of an object in front of them. Every solid object has texture, temperature, and shape. They can benefit from activities that involve handling a variety of objects to experience texture. These could include: squeezable balls, sensory “blankets,” activity muffs, finger painting, “clay” work with Play-Doh.

Go for a walk in a garden or woods and let your loved one touch leaves, tree bark, and flowers. Bring the feel of the outdoors inside by filling a tray or basket with similar objects like shells and coral to replicate the seashore, or acorns, pine cones, and various branches.

Incorporate “touch” into their daily routine, like folding warm laundry, sweeping the floor, arranging flowers in a vase, drying dishes, brushing a dog’s fur coat, knitting or crocheting.

2. Passive Tactile Stimulation

My Mom always seemed to want a handkerchief in her hand. She told me it gave her a feeling of reassurance. She also enjoyed carrying around a small purse that had a few items tucked in it like a comb and coin purse.

One of the ways I found to calm and comfort Mom when I visited her in the assisted living facility was to give her a weekly manicure. A pedicure and combing/brushing hair are other forms of passive tactile stimulation.

Giving a hand, foot, neck, or upper back massage is also a way to connect and communicate. Make sure your loved one gives you permission to do so. Do not surprise them. hands-holding-togetherUse a little massage oil like lavender or lemon balm to add to the sensory experience.

When temperatures change in the fall and winter months, make sure your loved one is kept warm both inside and outdoors. They may not be able to tell you when they are hot or cold. Sitting wrapped in a soft blanket can provide comfort and warmth to an anxious person. Cover sofas or an armchair with fake fur or sheepskin.

3. Pain

Be on the alert to pain in your loved one at all stages of the disease. Pain often goes undetected, under-recognized, and under-treated in persons with dementia. Most studies suggest that the experience of pain is elevated in persons with mild to moderate Alzheimer’s disease. However, pain sensitivity in the late stages is unclear, according to Sciencedaily.com.

Beside facial expressions like grimacing or frowning, some signs that your loved one is in pain include: guarding, bracing, moaning, sighing, aggressive behavior.

The bathroom and kitchen are places where scalding and burns happen. Adjust the water heater to 120 degrees Fahrenheit, and/or install anti-scald devices for water taps. Check into automatic shut-off devices for stoves and ovens. Unplug appliances when not in use.

Michelangelo symbolized the power of touch in his magnificent painting of the act of creation.  Create opportunities each day to “give life” to your loved one. The sense of touch is truly fundamental to human communication, bonding and health.

I wish you peace, joy, courage, and patience in your caregiving today and every day!

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Read more about touch and the elderly at: http://www.comfortkeepers.com/home/info-center/senior-care/the-power-of-touch-and-what-it-means-for-the-elder#sthash.f1NaePg5.dpuf.

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Dacher Keltner, UC Berkeley psychology professor and faculty director at the Greater Good Science Center, shares insights into touch therapies in this eight-minute YouTube video: https://youtu.be/GW5p8xOVwRo.

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The Alzheimer’s Association of Australia has a “Help Sheet on Pain.” You can find it here:

https://www.fightdementia.org.au/files/helpsheets/Helpsheet-CaringForSomeone11-Pain_english.pdf.

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For easy directions about giving a hand massage, check out: http://www.wikihow.com/Massage-Someone’s-Hand.

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Food for Thought: A Reflection on Taste

If you’ve seen the 1968 musical film “Oliver!” you may recall the song the orphans sing as they gather in the bleak dining hall for their main meal of the day. They yearn for “…magical food, wonderful food, marvelous food, heavenly food, beautiful food, glorious food!”

Peasant Family at Lunch by Albert Neuhuys

Peasant Family at Lunch by Albert Neuhuys

Food and our sense of taste have the power to transport us to a realm of wonderful or unpleasant memories, tasty or bitter experiences. Family celebrations and meals can be a meaningful part of the holiday season. Pamper your loved one by serving them “comfort” food or traditional holiday food that they ate growing up. Engage them in the preparation process. See if this will perk up their taste buds and appetite, especially if they have not been eating well. Even when memory is diminishing, the capacity for imagination and fun is still there.

 

In this reflection below, I ask you to think about food, and the marvels and wonders of your taste buds, and their inherent power to distinguish different tastes and combinations of tastes.

Find a spot conducive to your being quiet mentally, emotionally, and spiritually. Become aware of your breathing. Feel your shoulders relax. Try to let your mind go blank. Feel at peace with yourself, your surroundings, the world, and the people in your life.

Taste is influenced by many factors. For example, having a slice of hot toasted homemade bread slathered with butter and the marmalade made by a dear friend, tastes very different on a leisurely Sunday morning in the winter versus a hot summer day when you are rushing off to work, or have to tend to several errands.

Imagine for a moment if all fruits or all vegetables tasted the same way. How would it impact you?

Food and Culture

Become aware of the immense sources of pleasure brought to you by virtue of your taste buds.  If you were to confine food to sustenance and pleasure, your experiences in life would be limited: to connect with other cultures; to express an appreciation and acceptance of other cultures; to build bridges; to move beyond your boundaries; to introduce and encourage others to do the same.

How has your taste of food changed along your life’s journey or has it remained the same?

Is there a specific taste that appeals to you and for what reason? Is there a specific taste that you dislike and for what reason? What is your comfort food?  In what way does it soothe you?icecream-sundae

Tracing Your Roots

Now bring to your conscious awareness experiences of your life’s story, the roots of which you can trace to taste. Identify the many ways in which food and your family are closely linked.

december-17-holidaydinner-1060352_640What foods connect you to your family traditions, background, beliefs, cultural heritage, and celebrations?

What were the preferred tastes in your family – sweet, sour, bitter, salty, spicy? How did your family incorporate the different tastes of each family member?

What are the stories around family recipes that go back several generations, even to people you have never met but who have influenced you?

Evoking Memories

How does the taste of certain foods evoke memories of people whom you have met along your journey in life?

Are there certain foods that you have never tasted but have concluded that you do not or will not like? What are some of the places you have traveled and the foods you have eaten that are now part of your repertoire?

In the fullness of time, do you believe that taste can impact on the type of person you wish to become? What is the gift of your sense of taste?

Take a few minutes now before ending this meditation to write in your journal. Record what you want to take away from this experience and how it may help you become an even more knowledgeable, compassionate caregiver.

I wish you peace, patience, and joy in your caregiving today and every day!

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I owe a debt of gratitude to Merle Stern for composing this reflection as part of my series on dementia and the senses. Please feel free to share this meditation, referencing Merle and this website.

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Monica Heltemes is an occupational therapist with nearly twenty years of dementia care experience. Have fun with this activity about food that she posted recently on her website, “MindStart.com:”  http://www.mind-start.com/cinnamon-roll-sensory-Alzheimer-activity.html.

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What is spiciness? Watch this 4-minute TED educational video, “The Science of Spiciness,” by Rose Eveleth: https://youtu.be/qD0_yWgifDM.

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The choices you make about what to eat can have a lasting effect on your brain. To learn more, watch this TED-Ed lesson, “How the Food You Eat Affects Your Brain:” https://youtu.be/xyQY8a-ng6g.

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Here is a four-minute snippet from the movie musical, “Oliver!” This is the song the orphans sing before their meal of gruel: https://youtu.be/t9ZoZhfdo0A?list=RDt9ZoZhfdo0A.

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Final Gifts

It’s black on white – June 30, 2006 – the date on my mother’s death certificate. Even though she has been deceased for ten years now, Mom is very much with me in spirit today. I feel so blessed that I was able to be present when she passed away in the emergency room of a local hospital.november-angel-hand-and-rose-1548085_640

As I wrote in my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, “The images of her lovely, sweet toothless smile, her gentle spirit, and her last peaceful breath continue to stay with me” (p. 105). I learned so much from her throughout my life, but that day the lesson for me was not to be afraid of death!

My friend, Father Tom Schroer, S.M., Ph.D., had a similar experience with the death of his mother. He vividly remembers his mother’s last day of life, Saturday, March 24, 2007. In her fragile bedridden condition under hospice care in a nursing facility, his mother called each of her four children by name to hold her hand. Fr. Tom recounts it this way: “Taking my turn, I and my mother gently caressed each other’s hand for several minutes, without a spoken word – just the exchange of warmth and tenderness. It was a moment in time that I can still recall and feel deeply and gratefully whenever I want to return to that bedside image.” It is his mother’s “final gift” of warmth and tenderness that he continues to “unwrap” whenever he wants to recall that blessed exchange.

Alzheimer’s is a progressive and terminal disease that cannot be reversed. In 2015, it was the sixth leading cause of death. Alzheimer’s is a disease of the brain, but not the spirit. In the final stage of the disease your loved one usually can no longer communicate verbally. They are totally dependent for all their care, and for you to advocate and attend to their personal needs. There are still many opportunities in the last hours to connect with your loved one and honor their spirit and life.

It is important that we, as caregivers, ensure that our loved ones have a “good” end-of-life when that time comes. Our tasks at this phase of their life’s journey must be one of attentiveness, and  creating a soothing, peaceful atmosphere, no matter if they are at home, in an assisted living/nursing home, or hospital setting. It can be an opportunity to experience deep intimacy. Hopefully, prior to this time you were able to put plans in place for their end-of-life wishes and desired medical care.

How can one tell when it is near the end of life with a person with Alzheimer’s or other form of dementia? There are symptoms of later-stage dementia that can signal when a person is near the final stage of their illness. It is best to consult a family physician or hospice worker to diagnose this, but several symptoms include:

  • No speech, or limited speech to single words or phrases that may not make sense;
  • May sleep more during the day;
  • Inability to walk or stand, problems with sitting up, and become bed-bound;
  • Bowel and bladder incontinence;
  • Decrease in appetite;
  • Need help eating and may develop swallowing difficulties;
  • Weight loss;
  • Need help with all facets of daily activities;
  • Reduced ability to understand what is being said to them;
  • May develop infections such as urinary tract infection or pneumonia.

Even though their spoken language may be severely affected, your loved one may still use non-verbal communication and behavior to show their needs and feelings. Doctors tell us that even when they can’t speak or smile, their emotional memories remain. “Even if your loved one’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains,” notes Harvard Health Helpguide.org. While they may not be able to remember what you said, they can remember how you made them feel.

Here are a few things that you can do to make their end-of-life as comfortable as possible:

  1. Surround them with pictures and mementoes.
  2. Play their favorite music.
  3. Read aloud from their treasured books.
  4. Give them hugs to reassure that you are there for them.
  5. Hold their hands, gently stroke their arms, massage their arms or feet.
  6. Reminisce about life stories that bring comfort.
  7. Brush their hair.
  8. Check if they are in pain by looking for signs, such as facial expressions (grimacing), body language, crying, agitation.
  9. Continue talking to your loved one, even if you don’t think they are following what you are saying. They may still understand at some level and respond to the tone of your voice.
  10. Be willing to say goodbye and give them permission to “go.”
  11. Provide for a chaplain or spiritual leader of their faith community to visit and minister to them.

november-dusk-1004436_640Meaningful connections like these will help you meet your own emotional needs, as well as your loved one’s. Share the list above with family members or friends who may be reluctant to visit because they don’t quite know what to do or say that could provide comfort.

In their book, Final Gifts, hospice nurses Maggie Callanan and Patricia Kelley give examples how the dying leave behind gifts of wisdom, faith, and love for their loved ones to recall and carry close to their hearts. Being in the presence of a dying loved one can help us face our own mortality and teach us important lessons for living. Jade Alexander, author of Where Two Worlds Touch, describes her mother’s “final gift” this way: “Mom taught me how to love with my whole heart, how to organize my life around what really matters, how to be a good person, and how to accept and appreciate what is.”

“Unwrapping these ‘final gifts’ enables us to begin the healing and transforming of the incredible pain and sadness experienced with the loss of our loved one,” notes Fr. Tom.  The “final gifts” empower us to begin to establish a new connection with our loved one. St. John Chrysostom, an early Christian writer, wrote: “Those whom we love and lose are no longer where they were. They are now wherever we are.”

I wish you peace, courage, patience, and joy in your caregiving today and every day!

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Many thanks to Fr. Thomas Schroer, S.M., Ph.D., for sharing his experience and thoughts to use in this blog.

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Dementia trainer and advocate, Teepa Snow, talks to a group of caregivers about “Letting Go at the End of the Disease” in this short video: https://youtu.be/mNJxq4J5kYY.

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Dr. B. J. Miller is a palliative care physician at Zen Hospice Project who thinks deeply about how to create a dignified, graceful end of life for his patients. Take fifteen minutes to savor this moving talk, which asks big questions about how we think on death and honor life: https://youtu.be/apbSsILLh28.

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Create a personal website to share updates about a loved one’s health journey by going to: https://www.caringbridge.org/how-it-works.

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Take a few minutes’ break to listen to this beautiful rendition of the songs “Amazing Grace and My Chains Are Unbound,” by the Brigham Young University Singers: https://youtu.be/X6Mtpk4jeVA.  

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End-of-Life Decisions and Care

Let’s begin at the end. What do most of us wish for at the end of our lives? Dignity? Comfort? Respect? Love? These are the things I want for myself and my loved ones. If caring for my mother taught me anything, it was to be as prepared as possible for when that time came for her. november-luminous-sky-1107952_640

My experience with death in our family has been very limited. Neither I nor my siblings were present when my father passed away in the hospital in the early morning hours. Fortunately, I was present when Mom drew her last breath while she lay in a coma in a local hospital’s emergency room ten years ago. It was a peaceful passing!

I asked a friend of mine, Fr. Thomas Schroer, S.M., Ph.D., to share his thoughts and experiences with death and the dying. Fr. Tom’s mother was attended by hospice staff while in a nursing facility. He also has accompanied several dying individuals in their last hours. Fr. Tom shared   that it is important to have well-trained and caring professionals assisting families at the crisis time of a loved one’s impending death. It’s an exhausting emotional roller-coaster ride. Family members are bound to experience a range of emotions, even conflicting ones, when caring for a dying individual. In such a situation, caregivers are in need of support, as well as the dying person. “I remember so well the relief I experienced when hospice care providers arrived to assist my family during my mother’s last days,” writes Fr. Tom. “The healthcare professionals were committed to making her as comfortable as possible. We could now focus completely on supporting one another and my mother with the confidence that she was in good hands.”

Fr. Tom highly recommends reading the book, Final Gifts, by Maggie Callanan and Patricia Kelly, two hospice nurses. “As nurses for the dying,” write these two authors, “we see ourselves as the counterparts of birthing coaches or midwives, who assist in bringing life from the womb into the world. At the other end of life, we help to ease the transition from life through death to whatever exists beyond.”  As family caregivers, we increase the probability of the dying process taking place in the most lovable and caring manner possible, if we are able to envision the dying process as a “second birthing process.”

Since you want the best care possible for your loved one, a hospice provider can assist you in making that vision a reality, even in the familiar surroundings of one’s own home, if that is preferred. Health insurance will usually cover the expenses. It is important to check out in advance the reputations of the hospice providers in your vicinity. Fr. Tom notes that not all organizations are equal in terms of their professional excellence and care.

Death is part of everyone’s life cycle. However, it is rarely a topic for serious family conversation until a crisis. My family was so fortunate. Our parents took the initiative early in their retirement years to meet with a family lawyer to draft all the necessary papers for wills and advanced directives. They prepaid for plots at their local cemetery. My oldest sister was designated executor of their wills, while I was made their health-care surrogate. Following Mom’s diagnosis of Alzheimer’s and vascular dementia, I arranged for our parents to meet with a geriatric care manager/financial planner. My parents discussed these plans with all the family members. Dad kept all their important papers in a portable metal file case, with copies at the lawyer’s office. This made it easy for us to know where to look if anything happened to either one of them.

nov-writing-1149962_640Legal advanced planning is the best plan to have. This ensures the decisions you and your loved one wish will be honored without the expense, delay, or loss of legal rights that can go along with the court appointment of a guardian. If someone dies without a will, their estate goes into probate. The probate court then uses the laws of the state to decide who inherits what. If you already have formal documents in place, take a few minutes to review them now, in case they need updating.

My recommendations to caregivers include:

  1. Start the conversation with your loved one while they are still able to tell you what kind of end-of-life treatment they would accept or not accept. “The Conversation Project” offers a free starter kit online to help family members begin these discussions. (See resources below.)
  2. How would you/they want to be remembered? What matters most to you/them?
  3. What level of medical interventions do you/they want? CPR? Feeding Tube? Artificial nutrition? Pain control?
  4. Make sure end-of-life wishes are honored, not only with a living will or advanced directive, but also a POLST (Physician Orders for Life Sustaining Treatment). The POLST is a medical form that is legally recognized in many It spells out end-of-life treatments that you want or don’t want. Medical personnel, especially EMT’s who come by ambulance in a crisis MUST follow the instructions on a POLST. (See resources below.)
  5. Designate a health care surrogate for yourself and your loved one, as well as a person you trust who can serve as your agent with durable power of attorney. Consult with an attorney before making or revoking a Durable Power of Attorney.
  6. Look into what your local hospice services may have to offer if and when it comes time. If you think your loved one is nearing that time, discuss this with your family doctor. You can request an evaluation by a hospice organization yourself, but the formal request for services will usually have to come with a physician’s request.
  7. What type of spiritual practices and memorial traditions would you/they want?

Endings are extremely important and deserve our loving attention to details. Maggie Callanan notes, “Our dying is the ultimate signature on our life’s story.” Talking with family and friends, consulting with health and legal professionals, bereavement experts, and spiritual advisors can help you work through the grief and loss issues you will inevitably face. Knowing you have done all you can as a caregiver to be prepared will help you get on with life and loving and making wonderful memories in the current phase of your loved one’s life journey.

I wish you peace, patience, and joy in your caregiving today and every day!

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Many thanks to Fr. Thomas Schroer for taking time out of his busy schedule to share his thoughts about end-of-life care!

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The Conversation Project is a nonprofit organization devoted to helping families have conversations about end-of-life wishes. Their website is: http://theconversationproject.org.

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The National POLST Paradigm is a website that provides information about Physical Orders for Life-Sustaining Treatment: http://polst.org.

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Here is an interview with hospice worker Maggie Callanan, one of the authors of Final Giftshttps://youtu.be/kojj-OrS5Jk.

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Dr Jennifer Bute has released a series of short videos discussing dementia issues from her inside perspective as a person diagnosed with early onset dementia. Watch her seven-minute video about end-of-life issues: http://gloriousopportunity.org/dementia-issues.php.

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The Alzheimer’s Association has information to help with end-of-life planning at their website: http://www.alz.org/care/alzheimers-dementia-planning-ahead.asp#ixzz2lDd6TML2.

 

Smell, the Most Powerful Memory Trigger

Of our five senses, I believe the sense of smell is underrated and underappreciated. It has the power to evoke memories, imagination, old sentiments, and associations, some good, some not so good. Odors can cause our hearts to beat joyously, or contract with remembered grief and pain.

Relaxing in a lavender patch

Relaxing in a lavender patch

The sense of smell diminishes as we age. Persons in the early stages of Alzheimer’s disease may have subtle problems identifying odors. In fact, as I reported in an earlier blog article, a deteriorating sense of smell may even precede the onset of memory problems, and be a predictor of changes in the brain. We often think of Alzheimer’s as a disease of “memory for words and pictures.” However, it may also be a disease of “memory for sensory information” as well.

The focus of this article is to provide an opportunity to reflect, as family caregivers, on our amazing sense of smell. My mentor and friend, Merle Stern, composed the meditation below. As we pause to appreciate this powerful sense, we will come to a deeper awareness and better understanding of the need for compassion when our loved ones lose this unique sense. Hopefully, it will also help you feel more centered, particularly if it has been a tough day as a caregiver.

Merle shared with me that she remembers her mother telling her that when she went off to university, she was greatly missed. To soothe the void, her mother refrained from laundering Merle’s bed linen so that she could crawl occasionally into Merle’s bed and absorb the smell. Her mother found it soothing and comforting. Years later, when handed a crying baby, Merle took a page from her “mother’s book.”  She took a coat or sweater of the baby’s mother, placed it in her arms, and then took the baby who snuggled up, contented and happy, comforted by the smell of its mother.

With these thoughts in mind, please take a few minutes to find a quiet place and a comfortable position so that you can enter into this meditation without distraction.

Let yourself drift in time and space to a scent that ignites memories you wish to recall. The scent might be that of a person or a place (like a kitchen with a wood burning stove where everyone congregated around the table to share stories.) The scent might be from an object, such as a cup of freshly brewed morning coffee, your favorite perfume that you received as a gift from a loved one, or a special flower that grew in your family’s garden.

Breathe deeply with your eyes open. Imagine fusing yourself with the smell so that it is an extension of you and you are an extension of it. With each breath you inhale as you absorb the scent, you become an extension of it. When you exhale, the scent becomes an extension of you. You become the scent; the scent is your breath. You are recognized by this scent. It is in your pores, your body cells, in your blood, in your being.

Now gently close your eyes. Visualize in your mind’s eye the form your scent has taken. How do you see it? What is the color? Is there a luminous quality? What is the shape? Reach out and touch it, making contact with its shape and texture. It exudes an odor different from the one you chose. As you absorb its color, its luminous quality, its shape, texture, and smell, visualize this new form it now takes within you.

october-22-cup-of-coffee-photo-montage-488177_1280It emerges like a symphony and you can hear music playing, created from all the smells you love such as: chocolate, freshly baked homemade bread, lilacs, lavender, apples, coffee. This symphony of smells breathes new life into you. You revel in the radiance of the smell. You feel your body nourished by it. You wake up in the morning to this smell and fall asleep surrounded by this smell. You begin to feel renewed and ready to evaluate your life as a caregiver.

Take a few moments in quiet reflection. When you feel ready, open your eyes and come back to your surroundings, feeling revived and refreshed.

Spend a few minutes journaling about this experience. At times, we as caregivers might feel like we’re caught up in a whirlwind of emotions and thoughts. Ask yourself the following questions and write down your answers. That way you can come back from time to time and read what you’ve written to re-charge yourself:

  • What is missing in my life at this time? Is it solitude, communion with others, socialization, etc.?
  • How can I be more sensitive to the changing senses that my loved one may be experiencing because of the disease?
  • What can I do to enhance the quality of my life and that of my loved one?
  • What concrete plans will I make to incorporate these finding in my life?
  • Envisage your life emerging from this vantage point. What will it look like?

Our sense of smell is ten thousand times more sensitive than any of our other senses. May we come to appreciate this marvelous wonder of the human body! Helen Keller puts it so beautifully: “Smell is a potent wizard that transports you across thousands of miles and all the years you have lived.”

I wish you peace, patience, and joy in your caregiving today and every day!

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Please feel free to pass on this reflection to family and friends, but please give credit to Merle Stern and this website. I’d love to get your reactions and feedback about the meditation. Just jot me a note in the comments section below.

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If you’d like information about “smell training,” I’d recommend you watch this ten-minute video by Chris Kelly who is affiliated with the Monell Chemical Senses Center: https://youtu.be/wtAkWHN2xhc.

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For an inside look at how a person with dementia experiences the sense of smell, please check out this blog, “Welcome to Dementialand:” https://welcometodementialand.wordpress.com/2016/09/19/what-you-smell-in-dementialand/.

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Alzheimer’s and the Senses Part Three: Smell

Freshly baked cherry pie. Roast turkey. Warm mulled cider. Do the thoughts of these smells have you salivating? Old Spice men’s aftershave lotion (my Dad’s favorite). Skunk spray. Lilacs in bloom. Ammonia. Sweaty clothes. What memories do these odorants arouse? october8-nose-smelling-flower-adult-19033_640

Our incredible sense of smell serves many functions. It is a “portal” to our emotions. It is one of the drivers of what we eat and drink. Our ability to smell alerts us to possible dangers, and is critical to our good health and quality of life.

How Our Sense of Smell Works

The average human being, it is said, can recognize up to 10,000 separate odors. Our human olfactory (smell) system has approximately four hundred different receptors. These enable us to detect and identify thousands of odorants. Odorants are microscopic molecules released by substances around us that become airborne. When we breathe or sniff the air, these odorants are drawn into our nose, entering a complex system of nasal passages.

Lining a portion of these nasal passages is the olfactory epithelium, a thin sheet of mucus-coated sensory tissue located high inside the nose. The odorant molecules we breathe in settle into the mucus, making contact with and stimulating the specialized olfactory sensory cells, called sensory neurons. Each of these forty million different olfactory neurons has one odor receptor. These nerve cells connect directly to the brain.

october-8-nose-chartEach nerve cell has thin threadlike projections called olfactory cilia which float in the mucus. Olfactory cilia contain the molecular wherewithal for detecting and starting the process to recognize the odors, and for generating an electrical signal to be sent to the brain.

Electrical signals are sent to the brain along a thin nerve fiber known as an axon. Axons from the millions of olfactory receptor cells bundle together to form the olfactory nerve. Olfactory receptor cells send electrical messages via the olfactory nerve to the olfactory bulb.

Odor information eventually travels to the limbic system, the part of the brain involved in emotion and memory. Other odor information goes to the olfactory cortex where thought processes take place. Cross-connections between the limbic system and the cortex may be essential in forming our emotionally-laden and lifelong olfactory memories. The odor memories we make as children last many years.

Odorants reach the olfactory sensory cells in two ways: 1) by inhaling through the nose; 2) by chewing our food aromas are released through the channel that connects the roof of the throat to the nose.nose-and-mouth-are-connected This is one reason why, when we are congested due to a sinus infection, flu, or a head cold, this channel is blocked, affecting our ability to smell and taste our food.

Our sense of smell is also influenced by what is called the common chemical sense. This sense involves thousands of nerve endings, especially on the moist surfaces of our eyes, nose, mouth and throat. These nerve endings help us sense irritating substances – like the tear-inducing power of an onion, or the coolness of menthol.

Types of Smell Disorders

According to the National Institutes of Health, Senior Health, there are several types of smell disorders depending on how the sense of smell is affected.

  • Hyposmia occurs when a person’s ability to detect certain odors is reduced.
  • Anosmia is the complete inability to detect odors.
  • Parosmia is a change in the normal perception of odors, such as when the smell of  something familiar is distorted, or when something that normally smells pleasant now smells foul.
  • Phantosmia is the sensation of an odor that isn’t there.

The Importance of Smell  

Our sense of smell can serve as a first warning signal, alerting us to spoiled food, the odor of a natural gas leak or dangerous fumes, the smoke of a fire. When smell is impaired, it can also lead to a change of eating habits. Some people may eat too little and lose weight, or eat too much and gain weight. In severe cases, loss of smell can lead to depression.

Assessments for Loss of Smell

Serious smell loss can be caused by nasal obstruction that requires corrective surgery or by chronic viral infections with swelling that require special medications. Otolaryngologists are physicians who specialize in diseases of the ear, nose, and throat, including problems affecting taste and smell. An accurate assessment of smell loss includes:

  • Physical examination of the ears, nose, and throat.
  • Personal history including exposure to toxic chemicals or trauma.
  • Smell tests.
  • Discussion of treatment options, such as surgery, antibiotics, or steroids.

Alzheimer’s, Dementia and Olfactory Testing

An impaired sense of smell is normal as we age. Older people become less adept at identifying smells. Researchers estimate that more than one-third of adults over age seventy have olfactory deficits.

Losing our sense of smell could be a sign of brain damage. The sense of smell is often the first sense to go in cognitive decline, even before memory loss. It’s not the nose’s sensitivity that diminishes, but the brain’s capability of identifying what the odors are.  However, not all individuals with smell loss will develop a brain-related disorder.

Olfactory testing is gaining attention as researchers are discovering that changes in odor identification and loss of ability to smell may be an early biomarker in identifying Alzheimer’s, Parkinson’s, and other neurodegenerative disorders. Multiple studies have demonstrated a high correlation between Alzheimer’s disease and the presence and build up of beta amyloid protein and tau pathology in the areas of the brain that help us detect and perceive odors.

In one study, researchers at the University of Florida asked over ninety participants to smell a spoonful of peanut butter at a short distance from their nose. Participants included persons with a confirmed early stage Alzheimer’s diagnosis, persons with other forms of dementia, and those who had no cognitive or neurological problems. Only those with a confirmed diagnosis of early stage Alzheimer’s had trouble smelling the peanut butter, with their left nostril. The difference in smell between left and right nostril is unique to the disease. Currently, a smell test is not used as a diagnostic tool, but only to confirm an Alzheimer’s diagnosis. The theory is that, as dementia begins and progresses, the parts of the brain, particularly on the left side, that distinguish odors start to deteriorate. The brain is less capable of identifying smells.

At the 2016 Alzheimer’s Association International Conference in Toronto, researchers at Columbia University Medical Center, New York, reported on a study of 397 participants with an average age of 80. The study tested the predictability of dementia transition and cognitive decline using the 40-item University of Pennsylvania Smell Identification Test (UPSIT). october-8-smell-testThe test involved a scratch-and-sniff test of familiar scents like turpentine, lemon, licorice, and bubble gum. Participants were followed for four years. Their conclusions were that odor identification impairments were predictors of the transition to dementia.

How You Can Help

Smell ensures we maintain our personal hygiene and offers us an essential interaction with the world around us. Smell is essential for giving us pleasure from simple things such as flowers and food. For many people smell also helps to re-create memories.

Declines in the sense of smell are not obvious to detect. Although smell is not directly life threatening, it can still impact one’s quality of life. Nutrition and safety concerns are heavily linked to smell. People who have total or partial loss of the sense of smell are almost twice as likely to have some kinds of accidents than people who have normal smell function: cooking-related accidents; exposure to an undetected fire or gas leak; eating or drinking spoiled foods or toxic substances.

1) A Medical Checkup

Since changes in a person’s smell can occur for numerous reasons, schedule a medical checkup to ensure that there is no tumor, polyps, physical blockage or condition that might require treatment.

2) Preventing a Fire or Gas Leak

Your loved one may not be able to tell or smell that he or she left something burning on the stove or that gas is leaking and causing danger. Place sensors in their houses that can detect and warn of gas or smoke, and ones that can pick up the odor of dangerous airborne chemicals. Make sure smoke detectors are still working and change batteries on a regular basis. There are also items such as the “Fire Avert” detector. This invention detects a stove fire by smoke rather than heat. When triggered by the sound of a smoke detector, it shuts off power to the stove. (See below for description details.)

3) Labels on Bleach and Other Chemicals

Make sure that bottles of bleach, ammonia, and other chemicals are clearly marked in large letters, or kept locked away so they are not mistaken for liquids to drink.

4) Ensuring a Healthy Appetite

About 95% of what we think is taste is actually smell. With loss of smell, foods may taste different or have little or no taste. Plan meals that contain foods with different flavors, spices, and textures (e.g. creamy, crispy, crunchy). october-smell-herbs-restaurant-939436_640Try experimenting with a variety of spices and fresh herbs. To prevent malnutrition, ensure that the food your loved one consumes has appropriate levels of vitamins and nutrients.

5) Marinate Meat and Fish

One way to add a lot of flavor to meats and fish is to soak them in a marinade for a few hours or even overnight. Grocery stores carry a variety of prepared marinades, or you can make your own with simple pantry ingredients. Keep any foods in the refrigerator when they’re being marinated so that they remain safe to eat. Once the food is done marinating, cook it as you usually would and have your loved one try it. It just may be that what they previously couldn’t taste well now tastes great.

6) Preventing Food Spoilage

When shopping for food, try to buy in small portion sizes rather than bulk. If you do buy in bulk, then divide food into one-portion size individually sealed packages to store and cook.  Check the pantry shelves, refrigerator and freezer at least once a week for outdated, moldy and spoiled food.

7) Daily Hygiene

Many persons with smell loss have no idea that they have body or clothing odor, even if they do the “sniff” test. If they realized this, most would be embarrassed. If just the thought of bathing or showering your loved one makes you cringe, take a look below at the California Central Chapter’s recommendations and tips.

Avoid pointing out that clothes they are wearing are dirty or smelly. This puts your loved one on the defensive and could set up an argument. Instead, remove the soiled clothing from their room at night once your loved one is sound asleep. They’ll forget about it the next morning if there’s something else handy to put on. You might also purchase identical outfits, so that one can be washed while the other is worn.

8) Mold and Mildew

When you walk into the home, is there a musty smell? Your loved one may not be able to notice this smell. It is due to mold or mildew which are both fungi spores and could become a health problem. There are cleaning solutions available on the market. Air movement is also important for removing moisture and odors.  

Understanding the loss of one’s sense of smell and its associated problems will surely maximize your loved one’s quality of life, help them retain their independence longer, and even avert a dangerous accident.

I wish you peace, patience, and joy in your caregiving today and every day!

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( Sources used in preparing this article: 1. National Institutes of Health/Senior Health; 2. National Institute on Deafness and Other Communication Disorders; 3. The Monell Chemical Senses Center; 4. Alzheimer’s Association/AAIC.)

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Watch this four-minute TED-Ed animated explanation of our remarkable sense of smell: http://ed.ted.com/lessons/how-do-we-smell-rose-eveleth.

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To read more about the Fire Avert product, go to: http://www.firerescuemagazine.com/articles/print/volume-8/issue-1/professional-development/firefighter-s-invention-stops-kitchen-fires.html. This product is available through the Alzheimer Store. You can get a 10% discount by placing your order through my website: http://caregiverfamilies.com/products/.

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Find good tips on bathing with this newsletter from the California Central Chapter of the Alzheimer’s Association: http://www.alz.org/cacentral/documents/Dementia_Care_32-_The_Battle_of_the_Bathing.pdf.

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Dementia care advocate and trainer, Teepa Snow, has a short video that describes the loss of smell:  https://youtu.be/j9FFLaymycg.

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This four-minute video on problems with smell is by the National Institutes of Health: http://nihseniorhealth.gov/problemswithsmell/aboutproblemswithsmell/video/smell1_na.html?intro=yes.

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If you found this blog beneficial, please share it and “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Sign up for my free newsletter that accompanies each new blog with extra tips and resources for our subscribers.

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Eyes: A Reflection on our “Windows” to the World

The human senses are our contact to our environment. Perhaps the most important organs of sense are our eyes. An English proverb attests: “Eyes are the window of the soul.”  

Eyes: Our Windows to the World

Eyes: Our Windows to the World

In Part Two of my blog series on dementia and the senses, I focused on eyesight. Our eyes not only connect us with our surroundings, but help us maintain sharpness of our minds.

I often take my eyesight for granted. But the eyesight of persons with Alzheimer’s and dementia may change as the disease progresses. This will cause them to perceive and interpret their environment differently.

One of my favorite poets, Rumi, wrote, “Everything that is made beautiful and fair and lovely is made for the eye of one who sees.” With the following reflection, I hope to focus your awareness as a caregiver on seeing, appreciating, and “experiencing” objects in your daily life and surroundings. It was composed by my mentor and friend, Merle Stern.

Take a few moments to relax. Let your worries drift away as you dwell in appreciation of our remarkable sense of sight.

Find the time of day when you know that your life will be without distractions, not easily disturbed, and therefore an opportunity for reflection. Find a spot where you know there will not be any external intrusion. Take a comfortable position whether sitting or lying down.

After you have settled, focus your awareness on your breathing. Experience the movement of your breath as you quietly breathe in and out. Now feel your entire body in rhythm with your breathing.

With your eyes still open, scan your surroundings. Allow your eyes to settle on something to which you feel drawn. Depending where you are, it might be a flower, an arid landscape, a tree, an empty vase, a piece of furniture that you hope to refinish, a precious memento like a trophy, plaque, or favorite painting. september-20-vase-of-flowers-with-book-1329155_640

Become aware of what you are experiencing as your eyes settle on this object. What is your sight communicating to you? Even though you have seen this object before, somehow it is as if you are seeing it for the first time. Feel yourself drawn to connect to what you are seeing. Become aware of the feelings generated within you. Do you feel relaxed, serene, anxious, restless, or distracted by suddenly remembering you had something else to do?

Now engage in a dialogue in order to develop a relationship with your chosen object.  Formulate your own questions that specifically apply to that object. For example, had I chosen an empty vase, these are some of the questions I would pose:

  • I notice you do not have any flowers. Are you often without flowers?
  • Do you like having water and flowers in you?
  • How do you feel when you do not have any flowers?
  • Do you feel you are just on display?
  • Do you feel that there is a purpose to your existence? If so, what is it?
  • Are you here because you were given as a gift? Are you appreciated as a gift?
  • Do you have any favorite flowers, and if so what kind?
  • How do you feel when the flowers are gone?
  • How do you feel when the flowers have died but not removed, and the water emits an unpleasant smell?

After you have had all your questions answered, and you feel that you know your chosen object, take a moment and absorb what you are experiencing.

Now gently close your eyes. You are deliberately closing out light. Notice how your environment changes? Take a moment and absorb what you are experiencing. What is it that resonates with your being, e.g., the emptiness of the vase? What has awakened inside of you? How has the sight of the chosen object connected with what you are experiencing at this given moment in time? In the darkness you cannot see the object, but you know it is there. What are you experiencing? What is the difference between seeing the object in light, and knowing it is there in the darkness even though you cannot see it?

When you are ready, gently open your eyes and come back to the room.

What is the value of this experience for you? How can you be more sensitive to your loved one’s changing perception of their environment? Take a few minutes to write your reflections in your journal.

I wish you peace, patience, and joy in your caregiving today and every day!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here is a unique version of the song, “What a Wonderful World,” sung by the English boys’ chorus, Libera. The lyrics describe seeing the bountiful beauties of this world: https://youtu.be/b4nmVhnGtDw.

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My younger sister Marcia and I recently published a journal called My Blessings Journal. MyBlessingsJournalIt can be a useful tool to introduce you to the joys of keeping a journal. You can order a copy through my website: CaregiverFamilies.com/book/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

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Alzheimer’s and the Senses Part Two: Sight

My friends in high school nicknamed me “Eagle Eyes” because I had fantastic long distance eyesight. Now, almost seventy, I wear glasses, and my ophthalmologist told me that I have the beginnings of a cataract.  September eyesight 58345D779A

This is not so unusual. By age seventy, fewer than thirty percent of elderly people have 20/20 vision. According to the University of Michigan’s W. K. Kellogg Eye Center website, ninety percent of people over sixty-five have a cataract, and fifty percent of people between seventy-five and eighty-five have some vision loss due to cataracts.

There are several signs that our eyes are losing some sight. These include: changes in our ability to read and recognize people, difficulty in finding things or locating food on our plate, falling more, becoming hesitant when approaching curbs or stairs, and being startled by persons approaching us from the side.

Sight loss evolves from four conditions:

  1. Normal aging;
  2. Eye conditions such as macular degeneration, glaucoma, and cataracts;
  3. Health conditions, such as a stroke or retinal complications from diabetes;
  4. Dementias that may have a direct impact: Alzheimer’s, vascular dementia, Lewy Body dementia, and posterior cortical atrophy.

    Four Types of Vision

    Four Types of Vision

Seeing is a complicated process. Our eyes do not actually “see.” They act like a camera, transmitting information to the brain to interpret alongside information from our other senses, thoughts, and memories.

With Alzheimer’s disease this interpretation process becomes altered. Even though the information being transmitted remains the same, and the eyes and optic nerve suffer no injury, the brain will no longer process the information in the same way. Unfortunately, more than sixty percent of individuals with Alzheimer’s will have a decline in some sort of visual capacity.

Sight loss can contribute to increased confusion in persons with dementia. They are more vulnerable to falling. Their field of vision also shrinks. Dementia trainer Teepa Snow has an excellent video describing the visual perception range of a person with dementia. (See the resource below this article.) To get an idea how vision loss impacts a person in the mid-stages of the disease, take a ruler and hold it in front of your face horizontally and then vertically. This is their range for vision of approximately twelve-inches in diameter.

Diminishment in eyesight for a person with Alzheimer’s can occur in five areas. Let’s take a closer “look” at each of these, and what you might do to provide some help. These ideas come primarily from the Alzheimer’s Association, Central Ohio Chapter.

Area 1: Depth Perception

If there is damage to the right parietal lobe then the person might have problems with judging distances in three dimensions. Three dimensional or two-dimensional objects appear flat or as shadows. A black or dark door mat or rug may give the perception that there is a large hole in front of the doorway. Navigating stairs is a common difficulty. The person cannot distinguish curbs or steps. They have difficulty seeing water in a glass, or even the glass itself. Shiny flooring appears wet or slippery.

How you can help: Provide extra lighting where possible. Increase wattage of light bulbs. Reduce glare inside the home by pulling down shades when it is particularly sunny outside. Cover glass surfaces on tables. Close curtains or blinds at night. Alert them to curbs and number of steps or stairs when walking.

Area 2: Motion Blindness

The person with dementia is unable to sense movement. Their world is a series of “still frames,” and not a “movie” that most of us see. Part of the brain is damaged in the areas that receive signals from their peripheral vision. Some researchers believe this may account for why people with dementia can become lost, even in familiar surroundings. They can’t see where they are going or retain the memory of familiar landmarks. They can’t see anything except straight ahead without making a conscious effort to move their head instead of their eyes to see. They may also put things down and not be able to see or remember where they put them if they don’t move their heads.

How you can help: When you are out walking together, offer guidance and support. Offer your arm or take their hand if they will let you lead them. Alert them to upcoming sloping areas, steps or curbs. At home, keep a clutter free environment in walkways and hallways to avoid tripping hazards. At mealtimes, describe the food and drink, where it is on the table, and who and what condiments are beside or nearby your loved one.

Area 3: Color Perception

In aging eyes the lens yellow a bit and filter out blue light. Colors often appear faded or washed out, especially colors in the blue-violet range. Blacks and dark blues are particularly difficult to tell apart without bringing items into a bright light. The retina has more receptors to see “red,” which makes this color easier for most people to see.

How you can help: Color contrast is an important element. If possible, serve light food on a dark plate and dark food on a light plate. Serving mashed potatoes on a red plate rather white plate can make it easier to see. Serve drinks especially water in a distinctive color of glass. Put coffee in a white cup as opposed to a dark one. Painting a baseboard a contrasting color from the wall can help the person distinguish where the wall ends and the floor begins.

Area 4: Contrast Sensitivity

The ability to see a shade of gray on a white background or to see white on a light gray background declines with age. Eye specialists routinely test eyes for visual acuity, but contrast sensitivity testing often isn’t included in a routine eye exam. This test measures one’s ability to distinguish between finer and finer increments of light versus dark (contrast), the ability to see items that may not be outlined clearly, and items that do not stand out from their background. The Pelli-Robson chart is one of the most widely used devices to test contrast sensitivity.

Pelli-Robson Contrast Sensitivity Chart

Pelli-Robson Contrast Sensitivity Chart

A person with low contrast sensitivity may also have trouble seeing traffic lights or cars at night,  spots on clothes or other items, a flame burning on a stove, or misses facial gestures. Poor contrast sensitivity also increases the risk of falling when a person needs to step down from a curb or stair onto similarly colored pavement or flooring.

How you can help: Arrange for regular eye checks and a test for contrast sensitivity. Inform the optometrist your loved one has dementia so this can be taken into consideration when arranging for appointments or treatment. Eye glasses with specially designed yellow-tinted lenses can improve contrast. Improve lighting levels in the home, especially bright light for reading. A white toilet seat against a white wall may make it more difficult for the person with dementia to tell where to sit. Consider replacing the seat with a red one. Place contrasting colored rugs in front of doors and steps to help the person with dementia anticipate stairs and entrances. White or yellow borders on the edges of steps may also help.

Area 5: Visual Agnosia and Misidentifications

Agnosia is the loss of ability to recognize what objects are and what they are used for. A person with dementia may see a fork or a spoon but not remember what it is used for or how to hold it.

Agnosia is also the inability to recognize who people are. For example, they may be unable to distinguish the difference between their husband, son, or brother.

University of Montreal researcher Dr. Sven Joubert, Ph.D., conducted a study regarding the ability of persons with Alzheimer’s to perceive faces and cars. The results indicated that the brain must perform a local analysis of the various image components perceived by the eye. The study confirmed that Alzheimer’s disease impairs visual face perception.

How you can help: Try to imagine a person’s fear looking at a loved one and not recognizing him or her. Move yourself into the person’s visual field before you start to communicate or care for them. Get their attention by identifying yourself. This is a cue, especially if you are visiting and they haven’t seen you for awhile. I used to greet my mother in the nursing facility by saying, “Hi, Mom! It’s me, Vicki, your daughter.”

The latest research from two studies regarding early identification of cognitive dysfunction was presented at the Alzheimer’s Association International Conference in July. These studies showed that thinning of the retinal nerve and protein deposits in the eye could be used to detect early signs of dementia. Amyloid protein found in the brains of persons with Alzheimer’s can also accumulate in the retina. Perhaps in the near future a simple eye test will become a relatively easy, non-invasive way to spot cognitive changes early on.

Understanding potential eyesight problems, along with your efforts to help optimize the sense of sight in your loved one, will surely maximize their quality of life, help them retain their independence longer, reduce risk of falls and injuries, and provide reassurance at a time when the way they perceive reality may be changing.

I wish you peace, patience, and joy in your caregiving today and every day!

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Teepa Snow, dementia care expert and trainer, describes how the visual field of a person with dementia changes in this short video: https://youtu.be/NCCK-UDhXag.

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This video examines the “Emotional Aspects of Vision Loss,” by Dr. Sandra Fox, OD: http://training.mmlearn.org/video-library/emotional-aspects-of-vision-loss.

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For information about dry and wet age-related macular degeneration and other eye conditions, visit the website of the American Academy of Opthalmology: http://www.aao.org/eye-health.

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Put yourself in the shoes of Joe’s Mom, a woman living with dementia, in this three-minute video, “A Walk through Dementia,” produced by Alzheimer’s Research UK: https://youtu.be/R-Rcbj_qR4g.

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To read about Dr. Joubert’s study of visual face perception check out: http://j-alz.com/content/why-do-people-alzheimers-stop-recognizing-their-loved-ones.

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This four-minute Ted-Ed video examines the science behind night vision comparing our human eyes to those of other creatures: https://youtu.be/t3CjTU7TaNA?list=PLJicmE8fK0EiEzttYMD1zYkT-SmNf323z.

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In Tune with the Heartbeat of the Universe

Two weeks ago I introduced “Part One” of a series of articles focused on the senses, in particular the sense of hearing.

Today, I hope to illustrate the emotional impact of sound in our lives with the meditation below.

In Tune with the Universe

In Tune with the Universe

This exercise is meant to help you become acutely aware and alert to the many sounds around us, and the impact of hearing on the quality of our lives. This meditation was designed specifically for caregivers by my friend and mentor, Merle Stern. I ask that you take a few precious minutes to relax and discover the everyday heartbeat of the universe, then dwell in appreciation of our amazing sense called hearing. 

When you are ready, find a comfortable position, and abandon your weight to the chair or sofa in which you are sitting. Gently close your eyes and turn inwardly to the light within you.

Focus your awareness on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leave your body.

Become aware of the variety of sounds you hear. It may be the siren in a distance; the dripping of the faucet tap; the whirring of a fan; the chirping of different birds; people talking; the radio playing; the laughter of children; the slamming of a door – the list is endless. Take as much time as you need to identify all the sounds you are hearing.

Listen now to the loudest sound, then the second and third loudest sound, until there is silence. Review what you are hearing again, but this time, rate the sounds — from loudest to the softest. There are times when the softest sound speaks louder than that of thunder. For example, the faint cries of a child in distress may speak louder than the roar of a lion. There may also be times when a voice is deliberately tuned out in order to experience silence.

Now become aware that each sound you hear is triggering thoughts. Notice how your brain automatically tries to identify the source. For example, when you hear a siren, you differentiate whether it is an ambulance or a fire truck. When you hear your television, you identify the station, or perhaps even the person speaking or singing. If there is a humming sound in your home, you note the air conditioner, or refrigerator ice maker, or washing machine. Make a mental note of the thoughts that accompany what you are now hearing.

Become aware that as you hear a sound, including a voice, you automatically make a mental note of its volume, tone, and pitch. For example, when you hear the siren, you note whether it is loud, and whether the sound is gradually getting louder or fading in the distance. Compare that to a lullaby being sung. You find it soothing, and you conclude that a baby is being rocked to sleep.

Now become aware of the vibrations that are invoked by what you are hearing. For example, your body responds differently to the sound of a siren as opposed to a lullaby being sung.

Become aware that you are giving meaning to what you are hearing. You are deciding whether the sound is soothing or disquieting. You also identify the location by what you are hearing – if the sound is near or far, going from soft to loud, or the reverse. You try to figure out the reason behind the sound.

Aug 20 man on hill with milky-way-916523_640Feel yourself being surrounded by all the sounds you are hearing. You are also absorbing all the accompanying thoughts, volume, tone, vibrations, and the meanings that you have given to them. As you immerse yourself in these different sounds, become at one with them.

At the backdrop to what you are hearing, there is silence. Take a moment and locate that silence. See if you can find the sound within the silence. Now experience the peace of silence which permeates every cell within your body…within your entire being.

In this silence, try to hear or feel the vibration of your own heartbeat. Take a moment and listen to your heartbeat. Make a mental note of your thoughts as you hear the beating of your heart. Become aware of its volume, tone, rhythm. Become aware of the vibrations and their effect on your entire body, on your relationships, on your psyche, and the way in which it infuses your spirit.

As you continue to listen to your heartbeat, experience it in tune with the heartbeat of the universe. It is like a choir of which you are one of the singers. Feel what it is like to be in this choir of the universe of which you are an important member. Become aware of the difference between hearing your own heartbeat, and when you become at one with the heartbeat of the universe, and the relationship between both.

Take a moment and jot down in your journal a few lines as to what are your thoughts, feelings, and experience at this moment.

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Sound exists in space as interactions of electromagnetic vibrations. Here is a seven-minute sample of sounds of planets, moons and rings in our solar system: https://youtu.be/-MmWeZHsQzs.

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Pablo Arellano is a Mexican composer, director and writer who is known for his movie music scores. Listen to this harp music and relax to this piece called “Walking in Heaven:” https://youtu.be/DtK8G0hypLI.

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Composer Eric Whitacre leads a virtual choir of 5,905 singers, age 6 to 98, of every race, color and creed from 101 countries around the world. Here is “Fly to Paradise.” Surround yourself with sound for the next few minutes: http://ericwhitacre.com/the-virtual-choir/history/vc4-flytoparadise.

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Alzheimer’s and the Senses/ Part One: Hearing

Dementia is not just about memory loss. It impacts many different brain functions including the sense of hearing. The Better Hearing Institute advises us: “Listen to your ears. They might be telling you something.” Hearing loss should be the number one red flag, a sign of developing dementia or Alzheimer’s disease.

The Human Ear

The Human Ear

The ear was considered the seat of memory in antiquity, particularly in Latin literature. This was an era when books were scarce. The ear was thought to be the natural avenue of information. The ancients understood that a person who does not listen attentively does not remember well. Hence, we have the adage, “In one ear and out the other.” (The Classical Weekly, vol. XII, No. 4, p. 28.)

My husband and I recently attended a presentation on the effects of hearing loss sponsored by a local hearing aid company. I came to realize the close association of hearing loss with dementia. It also shocked me enough to schedule a hearing test. What I learned about our incredible sense of hearing was enlightening. Here’s a synopsis of that presentation, along with further research I did in this regard.

Our Amazing Sense of Hearing
Hearing is one of our most extraordinary processes. Our auditory system is completely intact in the womb by twenty weeks gestation. At twenty-three weeks a fetus can respond to loud noises, and may jerk or even hiccup after hearing a loud sound. (babysense.com)

The auditory system is comprised of two subsystems: the peripheral system (the outer ear, middle ear, and inner ear), and the central auditory system, (from the cochlear nucleus up to the auditory cortex of the brain). When these parts all work together, we can hear and process sounds. We rely on our hearing for many things:
• understanding speech which educates, informs, and entertains us;
• recognizing sounds that can warn and alert us to danger;
• recognizing background noises of nature and the world around us;
• appreciating pleasurable, beautiful sounds.

Diagram of the Ear

Diagram of the Ear

It is the cochlear, a spiral shaped tube filled with fluid and hair cells, which creates the electrical signals that pass through the auditory nerve to the brain. Sound is processed in different regions of the auditory cortex, part of the temporal lobes located on both sides of the brain. Here these electrical signals are interpreted as music, speech, or other sounds such as laughter, thunder, etc. The meaning of words is also processed in the temporal lobes.

The Brain and Hearing Loss
Studies at Johns Hopkins University, the University of Utah Health Care, and the National Institute on Aging show a link between hearing loss and mental decline. “Making sense of sound is one of the most computationally complex tasks we ask our brains to do: process information in microseconds,” says Nina Kraus, Ph.D., neuroscientist and director of Northwestern University’s Auditory Neuroscience Lab. The strain of decoding sounds over time may begin to overwhelm the brains of people with hearing loss. This forces the brain to devote too much energy to processing sound, and leaves the person more vulnerable to dementia. “Adults with hearing loss are more likely to develop problems thinking and remembering than adults with normal hearing.” (Starkey.com)

Statistics by the National Institute of Deafness and Other Communicative Disorders (NIDCD) reveal that one out of three persons between the ages of 65 and 74 have some degree of hearing loss. This number increases to almost 50% for those who are over 75. However, less than 25% of those who need hearing aids actually get them.

Dementia and Hearing Loss
Hearing impairment can make cognitive dysfunction worse. If a person can’t hear the words, their brain won’t remember the words, and those words start to become confusing. Hearing loss can bring on anxiety, social isolation, reduced alertness, and compromised personal safety. These are factors for developing dementia.

Research shows the following:
1. Adults with mild hearing loss (greater than 25 decibels) are two times more likely to develop dementia.
2. Adults with moderate hearing loss are three times more likely to develop dementia.
3. Adults with severe hearing loss are five times more likely to develop dementia.

Hearing and Quality of Life
It is recommended that every person over fifty years of age get their hearing tested every three years. A hearing evaluation should also be part of any assessment of cognitive function. Persons with Alzheimer’s and hearing loss can use and benefit from hearing aids. Improved sensory perception won’t stop the progression of Alzheimer’s disease, but increasing their ability to hear can help reduce the person’s confusion.

Making Adjustments for Communicating with a Person with Hearing Loss and Dementia
1. Get their attention. Always face the person when speaking. Get to their level. Gain attention by speaking their name or gently tapping them on the shoulder or arm.
2. Provide good lighting. Take care that bright light is not shining directly in the person’s eyes.
3. Reduce sudden unexpected or loud background noises as this may cause sensory overload. Avoid having too many people speak at the same time.
4. Slow down. Speak slower, more distinctly, but don’t let your speech become too exaggerated.
5. Speak in a normal tone. Don’t shout, as shouting can distort your voice and make it more difficult to understand. Don’t chew gum or have candy or food in your mouth while talking.
6. Simplify the message or write it down. Rephrase if needed. Give visual cues and gestures, such as moving your hands to your mouth to show eating food, brushing teeth, etc.
7. Give them time to hear what you are saying. Allow time for their brains to process and think of the answer.
8. If you are out in a restaurant, choose a table or booth away from a lot of noise. Have the person sit at the end of the table or lean with their back against the wall. These things reduce noise levels.

There is still much that we don’t know about the connection of hearing loss with dementia. But researchers are working diligently to find the answers. In the meantime, we can be more mindful of our incredible sense of hearing. Take time to listen and appreciate the wonderful sounds of nature, music, and the human voice.

I wish you joy, peace, patience, and love in your caregiving journey today and every day!

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Hearing loss is not a joke. But try this forty second hearing loss simulation featuring the Flintstones and Barney: https://youtu.be/ar1Dq-M2ok4

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Here is a ten-question hearing quiz to take: https://www.nidcd.nih.gov/health/do-you-need-hearing-test-quiz

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Hearing aids are expensive. Read about two cheaper but effective “hearing amplifiers” recommended by an audiologist at Johns Hopkins University: http://dailycaring.com/affordable-hearing-aid-alternatives-for-seniors-hearing-amplifiers

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Bird lover, Lang Elliott, has a lovely website filled with the “Music of Nature.” Check it out by going to: http://musicofnature.com/listening-room/.

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Steppingstones of a Caregiver’s Journey

We live in a world filled with change and crisis. I live in South Florida. The recent shootings and deaths in Orlando continue to pre-occupy the local news media. Multiple theories were advanced about the shooter’s motives in committing such a horrible crime. Many families experiencing tragedies in the USA and abroad, are mourning the loss of their loved ones and are in crisis. A friend of mine, Angel A., recently wrote a sentence on Facebook that continues to reverberate with me: “The mettle of a human being is proven by how well he deals with and overcomes challenges.”Stepping_stones_3 Wikimedia.org by Alethe (1)

Professionals say that a crisis may be a turning point or a breaking point. The theory of crises concerns how people are able to handle major disrupting changes in their lives and their impact on that person and others surrounding them. We can either “move ahead” or “move backward” and regress.

Receiving the diagnosis of Alzheimer’s disease for a loved one is certainly a crisis in their life and our own. I can still remember sitting in the neurologist’s office with my Mom and Dad when he shared the results of her neurological testing. All her tests pointed to a probable diagnosis of Alzheimer’s and vascular dementia. My heart was pounding; my hands were sweating. I felt numb inside. That was sixteen years ago! It was a crisis in my life and that of my parents. After my father’s death three years later, I became my mother’s primary caregiver. I was cast into a daunting role that caused another crisis within me. Would I have the ability to meet her needs?

Researchers note that three factors play a role in determining how effectively a person copes in a crisis. The first factor relates to your personal characteristics. These include: your age, where you live, how you solved problems in the past, how mature and confident you are.

The second group of factors relates to the crisis. These factors are: what the crisis is, how sudden was it, how controllable is it.

The third group includes your social and physical environment. How supportive are your family and friends? How accessible are community support services?

As I reflect back to that crisis period, I realize that I was somewhat prepared to take on this role. I was privileged to have had training as a counselor back in the mid-70’s. As part of that training I was introduced to the “Progoff Intensive Journal Program for Self-Development.” Dr. Ira Progoff was a psychologist who pioneered the therapeutic use of writing as a tool for ongoing self-growth. This program provides a method for keeping a journal to gain awareness about the diverse areas of one’s life and to develop a more meaningful life. Workshops are conducted throughout the USA and Canada.

stepping stones pexels-photo-86364One of the exercises in that journal program is called “Steppingstones.” This exercise asks us to reflect on eight to twelve steppingstones. These are periods of significant events throughout our life which, in hindsight, were marks of change for us. For each steppingstone event, you then outline the emotions, persons, fears, and hopes affiliated with it.

Caring for my mother was indeed a steppingstone event in my life. As I reflect on what previous life experiences and inner resources prepared me for this, I see that it was not only a crisis time, but became a period of transformation.  It helped shape me to be the person I am today.

To those of you who are thrust into a similar caregiver role, and feel you are in a crisis situation, try to analyze the crisis. Break it down into the smallest components possible. Each of these components may not seem so threatening. It will also make it easier to develop specific strategies to deal with those smaller components one by one. Here are some recommendations to prepare yourself for dealing with the crisis:

  • First, learn as much information as you can about the disease. By increasing your knowledge and understanding, you also increase your ability to cope successfully. There are numerous books, videos on line, and websites filled with resources and ways to handle a variety of stressful situations. Check out some of these at the “Resources” section of my website.
  • Second, build up a support network for yourself of family, friends, co-workers, and neighbors. If possible, attend a caregiver support group, talk to a professional counselor, or join an online group. A solid support network is critical. Not only is this support necessary for your emotional stability, but it may be helpful when you need to make objective, rational decisions.
  • Third, preserve a reasonable emotional balance by managing upsetting feelings aroused by this crisis. Work through your feelings by restructuring your thinking, such as telling yourself, “I will not let the negative things that happen today affect my mood or behavior.” Processing your feelings allows you to deal with them and let go of the negative ones. You may not be able to control what’s going on, but you can control how you react to it.
  • Fourth, maintain a satisfactory self-image and a sense of competence. Once the initial shock has worn off, get back to performing those everyday routine basic life functions. Attempt to maintain a sense of pride in doing the best you can as a caring person.
  • Fifth, take care of yourself. It’s the responsible thing to do.

Here is a reflection that will help you review your life’s journey and what has prepared you for your role of caregiver, care partner. Find a quiet place where you will be free from any distractions. Make yourself comfortable and spend a few minutes just focusing on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leaving your body. Let your body and mental state become calm and relaxed.

grassy slope trees-167761_640

Visualize yourself sitting under the shade of a tree, on a grassy knoll overlooking a brook. Visualize removing your shoes. In doing so, you can feel your body relax as your feet make contact with the grass. Feel the wind in your hair and on your face.

You are aware that you have been on life’s journey for a long time. Therefore, give yourself permission to take a rest and savor the journey upon which you have embarked. You are reflecting upon where you have come from, where you are going, and what has been the purpose of your life. You envision your life’s experiences as an education—an experiential education.

You begin to look at your past life through telescopic lens and you can see a path of steppingstones leading from the house/hospital/place where you were born to the grassy knoll where you are now sitting. You see how each steppingstone has brought you to where you are at this given moment in time. Through the telescopic lens you can see the sequence of your life’s experiences in which one stone connects to the other. It is like a thread that weaves itself in and around each stone, connecting one to another. In the process, the patterns and meanings of your life unfold. What up until this time has felt like a random disconnected series of events, now seem like the necessary steps in a journey towards enlightenment.

Do you wonder what lies ahead? In the distance you can see a hairpin curve obliterating what lies around the corner and beyond. Do you wonder whether you would be able to navigate the journey that lies ahead?

You remember that there have been significant turning points along your life’s journey. There were roads taken and roads not taken. Can you identify which moments were the important  turning points in your life? There were many obstacles along your journey, but now you envisage them as opportunities for growth.

 Each steppingstone is uniquely yours, to guide you, to define your pathway or journey through life. It is a way of creating yourself, defining who you are. There are times when you may feel as though you are “between a rock and a hard place” because the choices are limiting. Remember, you do have the choice to change your attitude.

How would you like your continued journey to unfold? It is like portaging – what do you carry with you, and what do you leave behind? What do you choose to bring with you to the next place? What is the baggage that is weighing you down…slowing you down and depriving you of enjoying your journey?

When you are ready to end this time of reflection, slowly bring yourself back to the present. Write a few lines about the journey taken and the journey still to come. What has been the value for you in mapping your steppingstones?  What strengths have you discovered that you possess to deal with a crisis?

Caring for a loved one has its joys, its sorrows, its high points, and low periods. The nature of the progression of Alzheimer’s disease is ever changing. Having the confidence in your ability to take on this caregiver role will help you better cope with the changes. One of my favorite bloggers, Maria Popova, puts it this way: “It is when life bends us to its will and we don’t break that we learn what we are made of.” Realize that you possess the qualities, the “mettle,” and resourcefulness that will help you through the crisis periods.

May you experience peace, patience, courage, and joy in your caregiving journey today and everyday!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here’s a song that will hopefully bring you some joy today. “Happiness is here and now. I have dropped my worries.” https://youtu.be/Q5kteKBfQ0I

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For information about the “Progoff Intensive Journal Program for Self-Development,” go to: http://intensivejournal.org/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

Depression and Dementia

Fact #1: Depression is a real illness. Fact #2: Depression is not a normal part of aging. Fact #3: Depression is treatable. Fact #4: Depression and dementia can occur together.  July 9 blue forest ab61c8cfe8839edbca449dea38c53c21

According to the National Institutes of Health, most people who experience depression need treatment to get better. Up to 40% of people with Alzheimer’s suffer from significant depression, notes the Alzheimer’s Association. It is particularly common in the early stages of dementia, and for those with vascular dementia or Parkinson’s disease dementia. However, identifying depression in a person with Alzheimer’s can be difficult since dementia can cause some of the same symptoms. Dementia does complicate matters. What is a caregiver to do?

I have a wonderful niece who is currently caring for her mother-in-law who has dementia. She called recently to ask me what to do, as she thought her mother-in-law might be experiencing depression. There were several circumstances that would cause her mother-in-law to be depressed:  her husband had died during the previous year; her house was sold and she moved into a new home with her son’s young family; her sister with whom she was close was moving out of state to be with her daughter.  These were reasons enough for anyone to become depressed.  I commend my niece for suspecting that her mother-in-law was suffering from depression.

How do you know if a person is depressed? Depression is not just a low mood of feeling sad but a complex disease. It is a persistent condition in which feelings like sadness and hopelessness dominate a person’s life and make it difficult for them to cope. Depression has serious effects on one’s physical and mental functioning. Some of the triggers leading to depression include:

  • Loss of the ability to do things that you used to do that give you pleasure;
  • Loss of loved ones;
  • Changes in health;
  • Major changes in life circumstances;
  • Feelings of low self-esteem, worthlessness, undue guilt;
  • Traumatic events.

Depression also has a number of causes common to people of all ages. These include genetic factors, ongoing stress, social isolation, drug interaction, drug and alcohol use. That is why it is so important to get a diagnosis so the depression can be treated.  The organization called Alzheimer’s Australia notes: “Dementia can contribute to depression through the slow erosion of confidence and self-esteem as a person’s ability to manage their physical and social environment is affected.”  Other changes that can contribute to depression in a person with dementia are:

  • Loss of independence and increasing reliance on others;
  • Inability to go out alone;
  • Loss of ability to undertake enjoyable activities;
  • Loss of ability to carry out everyday tasks
  • High anxiety and agitation;
  • Confusion and loss of memory.

July 9 cut Jeremy Thomas StocksnapINA1ZTZAX7

Why can depression be difficult to diagnose? There is an “age bias” that it’s normal for older people to be depressed, so it’s easier to go unrecognized. Persons with dementia can have problems communicating their own symptoms to their caregivers or doctors. If there is a noticeable change in behavior and functioning over a period of a few weeks, depression might just be the reason. If you see signs, discuss this with your loved one’s primary care doctor or a geriatric psychiatrist who specializes in the treatment of depression. Proper diagnosis requires a thorough evaluation, and treatment can improve your loved one’s sense of well-being and daily functioning.

What can be done to treat depression in persons with dementia? Once it is diagnosed, there is a range of treatment options depending how severe and long-standing the depression is. It is  important to understand the cause to determine what is most appropriate. If the depression has a physiological basis, an anti-depressant medication may be required. Making a decision about which medication to use is complex. There could be possible side effects, especially if the person is taking a medication for Alzheimer’s or other physical ailments. If the primary cause is psychological or environmental, the person may be more responsive to strategies such as: a reassuring daily routine, regular physical exercise, time spent doing enjoyable activities, regular social contact, reducing exposure to overstimulating or threatening situations, art and music therapy, pet therapy.

Do caregivers experience depression? It is not unusual for you the caregiver to develop mild or more serious depression as a result of the challenges you face in providing care day in and day out. According to the Alzheimer’s Association, one third of caregivers report symptoms of depression. My father, who was caregiver for Mom for several years, took a mild anti-depressant prescribed by his gerontologist. He told me it “took the edge off” his depression. Regardless if you are a caregiver or not, everyone has negative feelings from time to time. However, if you find yourself crying frequently, are easily angered by your loved one or others, are totally drained of energy, have unrelenting negative feelings like unexpressed anger, — these may be warning signs of depression. Please pay attention to them and seek help and support for your own sake and that of your loved one. Silence about depression only makes it worse.

May you find peace, patience, and joy in your caregiving journey today and every day!

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Here is a booklet to read and download: “Depression, what you need to know”: http://www.nimh.nih.gov/health/publications/depression-what-you-need-to-know-12-2015/index.shtml.

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For more information about depression and dementia check out: https://www.alz.org/care/alzheimers-dementia-depression.asp#symptoms, and

https://fightdementia.org.au/national/support-and-services/carers/behaviour-changes/depression-and-dementia.

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For information regarding depression in caregivers, please read: https://www.caregiver.org/depression-and-caregiving.

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This song combines the glory of a setting sun and music of ocean waves with a song to calm you, “Happiness Is Here and Now”: https://youtu.be/vTnZVjioahI.

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A World without Alzheimer’s Disease

Memory loss is not a normal part of the aging process. Let me repeat that. Memory loss is not a normal part of the aging process. You don’t become forgetful because you are aging. Permit me to rant, as I observe the first anniversary of the launch of my website and blog.

We are the world!

We are the world!

I attended a local arts event recently and introduced myself to a young woman who was with her teenage son. We shared a small table while munching on appetizers. I mentioned that I was an author who had recently self-published my memoir of caring for my mother who had Alzheimer’s (AD). The woman’s face lit up. She said she was caring for her father who had mild cognitive impairment. Her parents had divorced years ago, so the role of caring for him fell to her as an only child. She told me that several years’ prior, her father was exhibiting some strange behavior. She took him to his family doctor at that time who said his memory loss was just part of the aging process. Only recently the doctor put him on Aricept. She explained that he was having some difficulties in the late afternoons.

I asked if her father had been diagnosed by a neurologist and was told that he hadn’t. I encouraged her to have him tested, and gave her information about our local memory disorder clinic where my mother was tested and diagnosed with Alzheimer’s and vascular dementia. I also mentioned that the clinic offered a support group for family members.

The earlier a medical professional can diagnose AD, the more time there is for long-term planning by the individual and family, and putting support and structures in place to care for the person with the disease.

I gave the woman my card and my e-mail address. I hope she has been able to get her father the help that he needs, and the support and information she will need to make her caregiving journey more effective and fulfilling.

In this day and age, I think it is a crime that family doctors who deal with elderly patients aren’t more aware of symptoms of Alzheimer’s or other forms of dementia. Age-related memory changes are not the same thing as dementia. Permit me to try to make the distinction between temporary forgetfulness and memory loss in those of us who are aging.

Age-related Forgetfulness                                            Memory Loss

Forgetting names at times  vs Forgetting what your relationship is to that person
Forgetting temporarily where you put your car or house keys  vs Forgetting what the key is used for
Forgetting briefly while in the car where you need to turn to get to the store  vs Not finding your way home
Momentarily forgetting the day of the week  vs Not knowing the month or year
Walking into a room and forgetting why you entered  vs Not remembering where your bathroom is

Stress, infections, and medications can also cause memory issues. But further testing, rather than assumptions, is what’s really needed to determine the source of this memory decline. Don’t let your doctor get away with this age bias. It is important to pay attention to patterns of forgetting information. They can be markers to help determine the difference between normal aging and pathological aging.

Alzheimer’s is a fatal disease. Yet, according to a study published March 5, 2014, in the journal Neurology, researchers found that the number of deaths in 2010 due to AD in people 75+ could be six times higher than the official count. This would have made AD the THIRD leading cause of death behind heart disease and cancer. Instead, it was listed as the SIXTH cause of death in this age group. By 2050, the number projected to die of AD is 1.6 million, or 43% of all older adult deaths.

A study by The National Institute on Aging* notes: “Underreporting of AD as a cause of death on death certificates is a well-known phenomenon. Many others have dementia-related conditions, such as aspiration pneumonia listed as the primary cause of death, while the underlying disease, AD, is never reported.”  When I read this, I went to check my mother’s death certificate. Cardiopulmonary arrest/arterosclerotic heart disease is listed as her immediate cause of death. Hypertension, dementia, and osteoporosis are given as “significant conditions contributing to death.”

Alzheimer’s now afflicts about 35 million people worldwide. Until we as a society face the need to advocate for Alzheimer’s research and a cure, we will not come close to a world without the disease. The Alzheimer’s Association reports that only 45% of people with Alzheimer’s or their caregivers report being told of their Alzheimer’s diagnosis.

To be part of a solution is empowering. I promise to do my part to continue to inform and advocate. Here are a few considerations for all of us to come together to help create a world without Alzheimer’s:

  • Help break the “stigma” of living with AD. Don’t be afraid or embarrassed to talk about the disease and how it impacts your loved one and your family. Keep informed of the latest research in the field.
  • Help advance vital research. Check out the clinical trials and studies in your area and participate. You don’t need to have dementia to qualify. The Alzheimer’s Association has a free service called TrialMatch that will send you information about research near where you live. You can decide if you want to participate or not. There’s no obligation when you register.
  • Raise funds for important research. The Alzheimer’s Association plans annual walks and other fundraising efforts that you can support through participating and/or with a financial donation.
  • All parts of our communities can organize to adopt dementia friendly practices for the good of all. Talk to your pastor, rabbi, imam, your congressional representatives, and to local business owners to make our religious institutions, local communities, and businesses more “dementia friendly.” This website has information how to get started: http://www.actonalz.org/dementia-friendly-toolkit.

I will observe the first anniversary of launching this website on June 30. It is also my Mom’s ninth death anniversary. In the past year, I have covered a variety of topics from sundowning, to caregiver guilt, to the role of music, from communicating with children and teens, to the communication challenges of aphasia. You can check out these and other topics by going to my website’s archive at the right hand side of this article. Then choose a past blog by topic or month. I encourage you to pass along any of the links to help your family and friends share in your caregiving journey.

Thank you to all who have been following my blog as subscribers, making comments, and sharing your own journeys. Thanks also goes to my husband for his love and support, to my sister Marcia for providing editorial and artistic support, to Merle Stern for her beautiful meditations, and to my friend Priscilla Dunning for sharing her poems.

I look forward to another year of providing information and resources so you know that you are not alone. This reminds me of a popular song I used to sing as a child, “Side by Side.”  One of the lines of the lyrics goes: “We don’t know what’s coming tomorrow, maybe it’s trouble and sorrow, but we’ll travel the road, sharing our load, side by side.”

It’s going to take all of us to spread our knowledge and experience, and to advocate on behalf of those who cannot. I have great hope that someday in my lifetime there will be a world without Alzheimer’s disease!

June 25 world people banner-1375492_640

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Frankie Lane and Kay Starr perform her hit song, “Side by Side:” https://youtu.be/xuWFdxmJNgg.

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Dr. Jennifer Ashton explains some of the early warning signs of Alzheimer’s in this video: https://youtu.be/EGHdHsAfmdQ.

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Check this recent news release from John Hopkins about the need for early diagnoses: http://www.hopkinsmedicine.org/news/media/releases/lack_of_diagnosis_creates_added_risks_for_those_with_dementia.

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If you haven’t seen my webinar with Mike Good of “Together in This,” with tips on managing caregiver stress, check it out here: http://togetherinthis.com/trove-tips-managing-stress/.

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Lewy Body Dementia

Little people. Children. Small furry animals. Intruders in the house. These are some of the common visual hallucinations that persons diagnosed with dementia with Lewy Bodies (DLB) experience during the course of this very unpredictable disease.

Neurons

Neurons

Slow and rigid movements, staring spells or blank looks, incoherent thinking, excessive daytime sleepiness, and loss of balance may also be indications of DLB.

“This is the most common disease you never heard of, and yet the second most common form of degenerative dementia after Alzheimer’s,” remarked neurologist Dr. James E. Galvin, professor and associate dean for clinical research at the Charles E. Schmidt College of Medicine. Dr. Galvin is also a professor at the Christine E. Lynn College of Nursing, Florida Atlantic University. I had the privilege to hear Dr. Galvin’s presentations on DLB at two recent local conferences. While I had heard of this form of dementia, I had no idea of its symptoms and the difficulties associated with getting accurate diagnoses. I feel compelled to share with you what I learned at these conferences, in the likelihood that your loved one may exhibit symptoms of DLB. Few individuals and medical professionals are even aware that DLB exists. Your family practitioner is likely one of these.

Lewy Body Dementia affects about 1.4 million people in the US. It is not rare, but is often mistaken for Alzheimer’s Disease (AD) or Parkinson’s because it has symptoms of both these conditions. It is more common in men, typically begins at age 50 or older, and is a more rapidly progressive disease than AD.

A German neurologist, Dr. Friedrich Lewy, working in Vienna in 1912, discovered abnormal protein deposits in people with Parkinson’s disease. These deposits are now called “Lewy  bodies.” They are spherical reddish structures, abnormal clumps of protein called alpha-synuclein that develop inside nerve cells. In a healthy brain, this protein plays important roles in neurons, especially at synapses where brain cells communicate with each other. In DLB, the protein forms clumps inside neurons, “gum up” these nerve cells, and thus cause the cells to die.

Slide of a Lewy Body

Slide of a Lewy Body

Lewy Body Dementia is an umbrella term for two related clinical diagnoses, and shows itself in three possible ways:

  • Some individuals start with a movement disorder that is diagnosed as Parkinson’s disease and later develop dementia. This is called Parkinson’s Disease Dementia (PDD).
  • Other individuals start with cognitive/memory problems that might be mistaken for Alzheimer’s. However, over time they develop two or more features that distinguish it as dementia with Lewy bodies (DLB).
  • A third small group of individuals present with hallucinations, behavioral problems, and difficulty with complex mental activities.

Over time, all of these individuals will develop very similar cognitive, physical, sleep, and behavioral difficulties.

According to the Lewy Body Dementia Association, the symptoms can include:

  • Impaired thinking, such as loss of planning and processing information, memory, or the ability to understand visual information.
  • Fluctuations in cognition, attention or alertness. Some days the person will be doing well; other days they will be unresponsive or seem near death.
  • Problems with movement including tremors, stiffness, slowness, shuffling gait, repeated falls, and difficulty walking.
  • Visual hallucinations.
  • Sleep disorders, REM behavior disorder, such as acting out one’s dreams while asleep, shouting and grunting.
  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia.
  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

Dr. Galvin told conference participants that there is often a delay to diagnose and treat this form of dementia because it is commonly misdiagnosed as a late-onset psychiatric disorder. It is common for the person experiencing DLB symptoms to see three to four doctors before a diagnosis is obtained. An early and accurate diagnosis is critical and essential because DLB patients are extremely sensitive to certain drugs that can make their symptoms worse. Antipsychotic medications can increase the risk of death in elderly persons with DLB. While there are no medications approved yet to treat DLB, Dr. Galvin noted that there are medications approved to offer symptomatic benefits for cognitive, movement, and behavioral problems.

Dr. Galvin was instrumental in developing and testing a tool that helps detect DLB. It is called the “Quick Dementia Rating System.” It is a 10-item questionnaire available to download free and fill out at home. It takes about 3 – 5 minutes to complete. Each of the ten items has five possible answers increasing in severity of symptoms. You choose one answer that best fits each category to get a composite risk score. Scores range from 0 to 10, with higher scores representing greater cognitive impairment.

If you suspect that a loved one may have DLB, download this questionnaire below. Then take the test with the score to your family doctor or a neurologist. Extensive testing will likely be needed before a definite diagnosis can be made, but this can initiate that process.

Dr. Galvin is hopeful that a cure is on the way in the near future. Please check out the resources I note below, especially the website of the Lewy Body Dementia Association and their videos. My hope is that more individuals can be diagnosed early on to benefit from a longer quality of life.

May you find peace, patience, and joy in your caregiving journey today and every day!

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Download the “Quick Dementia Rating System Questionnaire” here: http://med.fau.edu/research/The%20Quick%20Dementia%20Rating%20System%20Instructions%20and%20Form.pdf.

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For a booklet about DLB information, go to: https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction.

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For resources, videos, and caregiver information, check out the Lewy Body Dementia Association, go to: https://www.lbda.org/.

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Watch a five-minute presentation from Professor Ian McKeith, President, of the Lewy Body Society UK: https://youtu.be/6lw1WscrIvY.

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Caregiving and Friendship

“Keep smilin’, keep shinin’, knowing you can always count on me, for sure. That’s what friends are for.”  These lyrics to the song, “That’s What Friends Are For,” were written in 1982 by Burt Bacharach and Carol Bayer Sager. When they composed that tune, it isn’t likely that they had caregiving of loved ones with dementia in mind. Yet, I think this song is very pertinent to the needs of caregivers.

Best Friends

Best Friends

Friends! We need them! Our loved ones need them! My parents taught me the old adage, “A friend in need is a friend indeed.” Friends are our lifelines.

Caregiving can get overwhelming at times, especially if caregivers don’t have regular breaks from their responsibilities. We all need the deep human bonds of friendship to give us strength, encouragement, and respite from the stresses of life. Isolation is a danger that creeps into the lives of families, particularly at a time when care partners need the most support. As the disease progresses, lifetime friends seem to fade away.

 

Many times caregivers don’t have the emotional energy to reach out to our family or friends when we need a break from caring. Or we may assume that friends and family should “know enough” to lend a helping hand or a listening ear. When they don’t come through for us, we become disappointed and alone in our caring. The cycle can become a vicious one to the detriment of our health.

It may seem easier to give up on friends or family members when they don’t come to our “rescue,” but it’s important to keep in contact with them. I made sure I wrote periodic e-mails and made regular phone calls to long-distance family members to keep them abreast of Mom’s condition, especially after she had a doctor visit, or an unusual incident. I wanted to give them a sense of what Alzheimer’s disease was like. We can be our own worst enemies if we suffer in silence. We also need to give others a chance to lend a helping hand.

If you are afraid to leave your loved one with a friend or family member, especially if they haven’t been around in awhile, brief them before hand on what to expect. Also, try to prepare your loved one in advance of the visit, as much as is possible.

The Alzheimer’s Association (AA) has a handout of ways for friends to help a family living with Alzheimer’s. You may want to send this post on to your friends and family, saying you would be grateful if they read this. Here are a few of the tips and ideas the AA offers to friends of caregivers:

  • Stay in touch – show you care. It doesn’t have to be expensive or take a lot of time, but a card, a phone call, or a short visit can really break up the long day for the caregiver.
  • Do the little things. Ask if you can run an errand, pick up an item from the grocery store, bring over a dinner or dessert.
  • Be specific when offering help. Ask your friend what they have on their “to do” list. Perhaps it’s mowing the grass, dropping off dry cleaning, mailing a package, shoveling snow, etc.
  • Include everyone in activities. Plan a coffee hour, lunch, afternoon tea, or picnic at your place. Have the caregiver friend bring their loved one.
  • Be a good listener. Try not to judge, but give support. Just allowing your friend to vent or share their experiences is a gift.
  • Treat the person with dementia with respect and dignity. They may not remember who you are, but just enjoying simple things, like a card game, a game of golf, working a puzzle, or listening to music together can help brighten their day.
  • Educate yourself about Alzheimer’s. You may hesitate to offer assistance, worrying that you’ll say or do the wrong thing. The person with dementia will likely welcome your contact because they worry that they are a burden to their caregiver.
  • Allow the caregiver some personal respite time. Even giving an hour or so of your time once a week can make all the difference to a caregiver. It allows them to take care of their personal needs while you stay with their loved one.   

I am Facebook “friends” with a compassionate pastor, Rev. Richard Goodwill. I worked with him for several years on staff at an international relief agency before I retired. In a recent posting, he wrote, “Friends guide us, care for us, confront us in love, console us in times of pain. Friends are free gifts from God.”  Even the early Roman philosopher, Marcus Tullius Cicero, understood the significance of friends in his writing, “Friendship improves happiness, and abates misery, by doubling our joys, and dividing our griefs.”

I pray that each caregiver has family and friends that come to their aid in times of need. I wish you friendship, peace, and joy in your caregiving today and everyday!

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To hear the song, “That’s What Friends Are For,” go to: https://youtu.be/uqlhBI3ES1s

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Caring for an older adult with Alzheimer’s or dementia can be an isolating experience. But knowing that a larger caregiving community exists helps you feel less alone. The real stories shared in this film shows that there are many people who are facing similar challenges and fears. This 48-minute HBO video is part of “The Alzheimer’s Caregivers Project.” http://www.hbo.com/alzheimers/caregivers.html.

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Create a “Help Calendar” where you can post requests for support from family and friends, like meals, rides to medical appointment, and visits. Check out this website and app:  http://lotsahelpinghands.com/.

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Try this fifteen-minute exercise, “How Would You Treat a Friend?:” http://ggia.berkeley.edu/practice/how_would_you_treat_a_friend.

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Here are additional recommendations from the Alzheimer’s Association how to help family and friends adjust to the disease: http://www.alz.org/i-have-alz/helping-friends-and-family.asp#friends.

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“Home Is Where the Heart Is” – Part 2

“Goin’ home, goin’ home, I’m a goin’ home;
Quiet-like, some still day, I’m jes’ goin’ home.

It’s not far, jes’ close by,
Through an open door;
Work all done, care laid by,
Goin’ to fear no more.”

These are the opening lines from the song, “Goin’ Home,” based on the Czech composer Antonin Dvorak’s famous “Largo” theme from his Symphony No. 9 (From the New World), Op. 95. These lyrics were written by one of Dvorak’s pupils, William Arms Fisher (1861-1948), who adapted and arranged the Largo theme. (Source: American Music Preservation.com)

Heading Home

Heading Home

Wanting to “go home” is a common behavior of persons with Alzheimer’s. Dementia care experts tell us that the “home” a person wants to return to is their childhood home. The need to “go home” often signals a need for privacy, for comfort, for security.

In Part 1, I explored ideas how to identify and address your loved one’s needs when they express this urge. It was based on ideas gleaned from caregivers and from experience with my own mother. In Part 2, I hope to guide you in a self-introspection, a reflection where you imagine you are the one wanting to “go home again.” Find about fifteen or twenty minutes when you are free of your responsibilities. Next, settle into a place where there will be no intrusion. If you are ready, then let’s begin.

Gently close your eyes and focus on your breathing. When you breathe in, feel your body relax. When you breathe out, feel the tensions leaving your body. Become aware of how your body is becoming calm and relaxed.

Now, go to your inner space where you are free from any difficulties. Indulge in the feeling of well being, and a feeling of being at one with the world.

Recall a time in your life when you were away from your home and had a yearning to return home. What was it like for you then? Did you desperately wish to return home and couldn’t wait to get back there?

Now, hear you own inner voice saying, “I want to go home.” Just hearing the word “home” evokes certain memories for you.

Is there a certain degree of comfort that comes with uttering these words? Do you find it soothing? Does it evoke emotions deep in your heart, such as a feeling of security in knowing there is a place where you belong? Are you longing for that overwhelming sense of familiarity: the feelings that come from having close relationships; treating everyone as equals; the familiar habits and rituals; knowing what to expect of others and what they expect of you; knowing there is a structure of which you are a part?

You will have other thoughts that emerge at this time which subscribe to the statement, “I want to go home.” What is it about these attributes that are like a magnet pulling you in that direction? Are you missing the gentle touch of a close and loving relationship? Try to identify as many possible aspects that you can.

After a few minutes, allow this scene to gradually fade out and focus on your breathing.

Now, gradually “crawl into the skin” of your loved one. Take as long as you can to experience what this might be like. You are wearing the same clothes. You have the same mannerisms, the same gait, etc.

The Old Homestead

The Old Homestead

 

As you “become” your loved one’s persona, you can hear your own voice saying to yourself, “I want to go home.” What are you feeling when you say these words? What is missing in your life that you want to recapture? What precipitated this request of “wanting to go home?” Was it a momentary sense of familiarity, like déjà vu, or somewhere in your being where there is this treasure of home – a place where you belong?

Stay in this phase as long as you wish, allowing information to emerge. Then gradually “crawl out” of the skin of your loved one and back into your own.

Focus your awareness on your breathing. Become aware of the value of this experience. What have you discovered about yourself? What have you discovered about your loved one? What have you discovered about the universal human need for a place to call “home?”  

Now, when you hear your loved one tell you, “I want to go home,” will you hear these words any differently? What has changed for you? How was this change brought about? You may want to write down your reflections. This will make it easier, then, to read back from time to time your insights gleaned from this meditation. 

Blogger and caregiver, Bob DeMarco, posted an article on this topic on his popular website, Alzheimer’s Reading Room, October 27, 2013. He responded to his mother’s request by telling her, “I don’t want you to go anywhere. I want you to stay here with me.” He wrote that it took time for his mother to come around, but by reinforcing this many times with warmth and love, his mother felt secure enough and eventually stopped making this request.

The lyrics of the song, “Goin’ Home,” are a powerful sentiment that springs from the nostalgia of the soul that all humans feel:

Mother’s there ‘spectin’ me,
Father’s waitin’ too;
Lots o’ folks gather’d there,
All the friends I knew,
All the friends I knew.
Home, I’m goin’ home!

I hope the ideas of Part 1, along with the meditation of Part 2, bring you peace, patience, and joy in your caregiving today and every day!

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Special thanks goes to my mentor and friend, Merle Stern, for composing the original meditation that I adapted for this blog.

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Listen to a rendition of “Goin’ Home” sung by Libera, the famous English boys’ chorus:  https://youtu.be/o2aLSat3h0w.

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My friend and poet Priscilla Dunning expresses the nostalgia for “home” of a frail elderly woman in her poem:

Not So Golden

In the blink of an eye,

she became old.

Not the retire-to-golf and free-time

and travel to exotic places kind of old.

You see it in the “Golden Years” ads filled

with smiling Seniors

going off to some “fun in the sun.”

Her kind of old was like a thief

breaking in with silent feet,

rifling through the drawers of her mind,

replacing the contents with forgetfulness,

stealing her health and her home,

leaving behind the need for relocation.

 

Like a burglar, this kind of old crept in

through the window.

It robbed her of independence and left her unsettled.

It swindled her of energy and happiness and

reshaped her future—

replacing it with desperate uncertainty and longing

to return home.

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“Home Is Where the Heart Is” – Part 1

“I want to go home. Please take me home now!” This was my Mom’s frequent request for a period of a few months. At the time, she was residing in a dementia unit at an assisted living facility after my father passed away. Her “home” was now the second floor of the facility, and a one-room bedroom with a bathroom that she shared with another female resident.

Home, Sweet Home

Home, Sweet Home

It broke my heart to hear Mom’s plea. I often struggled for ways to distract and re-direct her.  I even wrote a poem, “Home, Sweet Home,” about my feeling of helplessness, and included it in my memoir, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion.

This blog’s title is from a familiar quote, “Home is where the heart is.” It is attributed to Pliny the Elder, a Roman author, naturalist, and natural philosopher. Pliny understood its implications back in the first century AD. The concept of “home” has many emotional connotations for each of us. For me, home is a place of comfort, security, love of family, refuge from the world’s conflicts, where I can be myself.

Dementia care experts tell us that the “home” a person wants to return to is their childhood home. The need to “go home” often signals a need for privacy, for comfort, for security. It can be especially frustrating for you, the caregiver, to hear this plea when your loved one is already home, or are living now with you, their daughter or son.

For someone with Alzheimer’s, it is a “normal” behavior, given the confusion, anxiety, and loss of control they may be experiencing at the time. Their long-term memory of their childhood home is still intact. Telling them they are home, does not relieve their anxiety. Reasoning or using logic does not work in this situation. Arguing will only make things worse.

The Journey Home

The Journey Home

Instead of correcting them, here are a few ideas I gleaned from experience and from other caregivers:

  • Try to understand why they may be saying this. What is it that they really mean? Sometimes this might be your loved one’s way of letting you know they are scared, or anxious. They just need extra reassurance and comfort. A gentle hug, or stroking of the shoulder, arm, or hand might help. Simply sitting with them, or giving them a soft blanket or a stuffed animal to cuddle might also calm them.
  • Is there a certain time of day when they exhibit this need to go home? Is there a pattern? If it occurs late in the afternoon or early evening, they may be exhausted from the day’s activities. This is their way of telling you they are tired out. If that is the case, letting them rest while you put on soft music may ease the situation.
  • Agreeing and redirecting might work. Saying something like, “We’ll go as soon as I can tidy up here. Would you like to help me?” Or, “Let’s get your coat so you won’t be chilly.” Just the act of getting ready can be calming. Then as you walk to the closet, re-direct them, chatting about something pleasant, stop in the kitchen to get a drink, or get involved in some activity that they like to do.
  • They may need exercise or a change of atmosphere. Respond by saying, “Let’s go,” and take them for a walk in the neighborhood. You might even have to drive them around for a few minutes, then suggest a stop, at a favorite spot of theirs, like a McDonald’s, a park, etc.
  • Have you recently redecorated, or moved furniture around? Is the place where they live a new and unfamiliar environment for them? Have they recently moved into your home or an assisted living facility? If so, can you make their room a place filled with familiar furniture, a favorite quilt, photographs, knick knacks that they love, items that are familiar to them?
  • Is there a set of circumstances that trigger this request? For example, are children coming home from school, or is it rush hour time with busy traffic? These triggers might signal that your loved one needs to be home. In my mother’s case, she was frantically pacing the corridor one afternoon when I came to visit. She kept saying, “I have to get home before the kids, or Mom will be mad at me.” It took me a few minutes to finally figure out that when Mom was in high school, she needed to get home to care for her younger brothers as her parents both worked in their grocery store.  It was her responsibility to look after them until supper time. Mom felt an urgency to follow the same routine she did while growing up. I was able to distract Mom by telling her to come with me to her room so that I could call her mother on the phone and let her know Mom was on her way. She calmed down and walked with me. By the time we got to her room, Mom had forgotten why we were there. I was very relieved that I didn’t have to “fake” a phone call to her deceased mother.
  • Try to figure out what might make your loved one feel the safest. Make up an excuse: “The house is being painted right now. We’ll go later.” Or pull out some photos of their childhood home, and say, “We can’t go today, but tell me about your home. What was your favorite room?”
  • Check for any physical discomfort or personal hygiene needs. They may not be able to tell you they have to go to the bathroom, need a nap, or are thirsty and need a drink of water. Something as simple as taking care of one of these needs may resolve the matter of going home.

The 20th century British playwright and poet, T. S. Eliot, noted that “Home is where one starts from.” It all comes down to you, the caregiver, remaining calm and composed, trying to discover the underlying meaning of their request. Sometimes you just have to get creative. If you rule out environmental factors, a stimulus overload, physical or emotional needs, you’ll likely be able to find what will reassure and bring comfort to your loved one.

In my next blog in two weeks, I will continue this theme with a “Part 2.” It will include a reflection for caregivers. I hope it will help you to imagine what it might be like when a loved one pleads with you to take them home. Please stay tuned!

May you find peace, patience, and joy in your caregiving today and every day!

*  *  *

CNN’s Dr. Sanjay Gupta traveled to the Netherlands to show a model village, a New Age “home,” for persons with dementia. Take a look at this 23-minute video: https://youtu.be/LwiOBlyWpko.

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There have been many songs written about going home. Here is a YouTube video of the song John Denver made famous, “Take Me Home, Country Road,” with lovely photographs:  https://youtu.be/oTeUdJky9rY.

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Music: Orange Juice for the Ear, Tonic for the Soul

“Music can lift us out of depression or move us to tears — it is a remedy, a tonic, orange juice for the ear. But for many of my neurological patients, music is even more – it can provide access, when no medication can, to movement, to speech, to life. For them, music is not a luxury, but a necessity.” So noted Oliver Sacks, MD, Professor of Neurology at New York University School of Medicine.

Orange juice for the ear!

Orange juice for the ear!

Dr. Sacks passed away August 30, 2015. He was a prominent researcher who made important contributions to the study of Alzheimer’s and other dementia. He was also one of the  pioneers to connect the great therapeutic potential of music for persons with a variety of neurological conditions.

I recently read Dr. Sacks’ 2007 book, Musicophilia, Tales of Music and the Brain. This book substantiated what I knew implicitly from my own experiences with my mother – that even when dementia is in an advanced stage, their response to music is preserved. One of the tenets of Sacks’ theory is that we humans are a musical species, no less than a linguistic one. Our propensity to music shows itself in infancy and is manifest in every culture and civilization. Music can reproduce all the emotions of our innermost being.

Dr. Sacks writes: “So much of what is heard during one’s early years may be ‘engraved’ on the brain for the rest of one’s life. Our auditory systems, our nervous systems, are indeed exquisitely tuned for music.” Musical perception and sensibility, musical emotion and musical memory can survive long after other forms of memory have disappeared. Music engages the part of the brain that stores long-term memories.

Music played an important part in my life growing up. My parents were both musical. Both had beautiful voices and perfect pitch. Dad was an accomplished violinist who played on his hometown radio station as part of a trio with his two brothers, Ed, the pianist and organist, and Henry, who played the cello. Mom was a pianist and organist. After they met and married, Dad directed the local church choir while Mom played the organ. They were devoted to this music ministry for twenty-five years. You can imagine the wonderful sounds and harmonies that wafted through our home!

When my parents retired to Florida, they established a chorus of residents from their retirement community, Village Green in Vero Beach.The group, called the Choraliers, sang and performed for about fourteen years. Dad was the director and Mom was their pianist.  

The Village Green Choraliers, directed by my Dad, and Mom as the accompanist

The Village Green Choraliers, directed by my Dad, and Mom as the accompanist

Music continued to be important during the years when I cared for my mother. I recount in Chapter Nine of my memoir, Elegy for Mom, that when I would visit Mom on Saturdays, we would sit in her room and listen to music on a tape recorder while I gave her a manicure. “The music gave her a sense of peace and contentment. Mom would hum and sing along in her beautiful alto voice.” (Page 68) On Sundays, we would attend a Communion service for Catholic residents of the facility. Mom would sing the familiar hymns, despite her difficulty with everyday conversation. She remembered the words and music to the “Our Father,” which she must have sung thousands of times in her lifetime.

On the website, Alzheimer’s.net, Alissa Sauer posted an article on “Five Reasons Why Music Boosts Brain Activity.” (July 21, 2014) She lists the following:

  1. Music evokes emotions that bring memories.
  2. Musical aptitude and appreciation are two of the last remaining abilities in dementia patients.
  3. Music can bring emotional and physical closeness.
  4. Singing is engaging.
  5. Music can shift mood, manage stress, and stimulate positive interaction.

To your loved ones who may be having difficulty communicating, who appear tense and confused, who might be feeling depressed, music can have the power beyond anything else to restore them to themselves and to others, at least for a while. Being able to sing “words” can be a reassurance to a person who otherwise doesn’t remember how to converse. The words are still “in” them, though it may take music to bring them out. Check out the website, Alzheimer’s Foundation.org, which gives a “how-to” sheet on using music at the various stages of dementia.

Give yourself a ten-minute break from caregiving and experience the power of music in this reflection created by my friend and mentor, Merle Stern. Play one of your favorite pieces of music, or music that invokes a special memory, as you enjoy this meditation.

Gently close your eyes and calm your mind by focusing on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leaving your body.

Let your mind drift to a meadow. You are lying on a grassy knoll. Feel your body in contact with the ground. Picture details about the place: its size and terrain; is there grass? was it recently mowed? are there wild flowers? what kind?

Look at the clouds, if there are any. Listen to the wind as it blows through the shrubs and branches of the trees. Feel the wind blowing gently on your face, and the warmth of the sun’s rays.

You can hear music playing way out in the distance. It is familiar to you, and gradually it is getting closer and closer. As it comes nearer, you feel it resounding through your body, throbbing in your veins. It feels like being on a beach and lying at the edge of the water. The music, like the water, is gently washing over you. After a while, you feel that it is not only externally, but internally, gently washing over and within you. There are also colors emerging with the music. The sunlight is changing, and your body feels elevated from the ground and at one with the music.

Stay in this state for a while. Let the music vibrate within and around you as you explore the sound. Gradually, the music begins to fade away and you are back in the meadow.

Become aware of your breathing and the room where you are sitting, and all that is in it. In this quiet state, reflect on how this experience has been a reflection of your life. What lesson can you take from it?  

As Oliver Sacks puts it so well, “Music is part of being human.” Just like we need sunlight and vitamin C in order to be healthy, take your daily “orange juice for the ear” and share it every day with your loved one!  I wish you peace, joy, patience, and memorable music in your caregiving journey!

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Listen to a four-minute video of Dr. Oliver Sacks discuss the benefits of music for Alzheimer’s and dementia patients: https://youtu.be/MdYplKQ4JBc .

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Watch the effect music has on this elderly gentleman when he hears a familiar song. He is brought back to life, so to speak, by music: https://youtu.be/fyZQf0p73QM.

*  *  *

Here is an official trailer to a documentary movie, “Alive Inside.” It explores music’s capacity to awaken our souls: https://youtu.be/fVkrI1R0XjA. It is available in movie theaters and as a DVD for purchase on the website: Aliveinside.us.

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The non-profit organization, Music & Memory, has instructions “How to Create a Personalized Playlist for Your Loved One at Home.” Check out their website here: https://musicandmemory.org.

 *  *  *

April is National Poetry Month. I’d like to share a poem written by a dear friend of mine, Priscilla Dunning. It resonates with the theme of memory and music.

MRS. WINSTANLEY AND THE PIANO

By 12:35 p.m.

she had finished her lunch.

By 12:45 p.m.

she had wheeled herself into the sunroom.

She was on nursing home time, and as it

happened every day, her eyes went to

the piano in the corner of the room.

Since her stroke, she couldn’t speak.

Neither could the piano.

Yet, it spoke to her.

 

It was just an old upright with scratches and dents,

(no Baby Grand) –

elegant in its way, like an

aristocrat whose fortunes had declined.

It resided in a corner, out of the way,

tuned on an “as needed” basis.

 

By 1:00 p.m.

she began her silent conversation,

telling the piano how alike they were –

how they both operated on wheels;

how with her fingers and the piano’s keys,

they could play wonderful concerts together;

and how they may both be old, but their strings

were filled with memories of fun and laughter.

 

By 1:15 p.m.

Mrs. Winstanley sat in a corner, out of the way, and

couldn’t remember if she had ever really played.

Yet, like the piano, the music was still inside of her

even though her strings needed tuning,

and her wheels needed oiling,

and her memory needed practice.

 

By 1:30 p.m.

The piano remained silent

and sleep overcame her.

The conversation was finished.

Daily Manifestations of Love

In the 1943 classic best-selling children’s book, The Little Prince, by Antoine de Saint-Exupery, the wise fox teaches The Little Prince about love, friendship, and trust. “Here is my secret. It’s quite simple. One sees clearly only with the heart. Anything essential is invisible to the eyes.”

Cover to the book painted in 1943 by the author

Cover to the book painted in 1943 by the author

The background scenery to The Little Prince is a desert far from civilization. The aviator-narrator’s plane has crashed. Here he meets the mystical boy who is searching for a way to get back home to his asteroid B-612 to tend to his rose.

Spoiler Alert: The Little Prince does find the answers to his questions about what is important in life. He decides to return to his planet to tend to the rose that he loved. Love makes a person responsible for the beings that one loves. Our loved ones can teach us the true values and meaning of life and love if we are open to “seeing with our hearts.”

In some ways this story is really for adults, as it is a poetic allegory of human nature, loneliness, love, and loss. To a person with dementia, it may seem, at times, as if their world is a desert, void of familiar signs and familiar faces. This desert, however, is not arid. It flowers with emotional, musical, and long-term memories.

Your love nurtures the blooms of memories.

Your love nurtures the blooms of their memories.

“What time is it? What day is this?” These questions, repeated over and over again, are really their attempts to connect to us, to communicate, to make sense of their everyday world. A person with dementia is not intentionally trying to make your life difficult. Each moment is a new experience for them, at times a frightening one.

People with dementia pay more attention to what they see than to what they hear. Our body language and facial expressions give them visual cues. The way you approach your loved one, then, can make a big difference whether they interact positively with what you are asking them to do, or instead become belligerent or upset. If you are calm, they will get calm, too.

We, as caregivers, must attempt every day to “see clearly with the heart,” to see the person, not the dementia. This is even more a necessity when our loved ones are in the stage of their disease when they are no longer able to verbalize their needs or feelings. We become our loved one’s reality. They depend on us to help them stay connected to the world. “Seeing clearly with the heart” takes a conscious, patient, loving effort, especially during times of anger, frustration, or misunderstanding.

It is our role to understand the clues our loved ones give us about their wants, needs, and feelings. Looking with the “eyes of the heart” enables us to look beyond their behaviors, to check their non-verbal cues, and to reassure them that we care and want to understand and help.

There are many instances each day when you have opportunities to manifest your love. Here are just a few:

  • Focusing on what skills they still have to do things that give your loved one a sense of accomplishment;
  • Being patient by waiting while your loved one searches for a word;
  • Treating them the way you want to be treated;
  • Engaging in activities that reduce their boredom;
  • Enjoying a laugh, a walk together, an activity they love to do;
  • Modeling how to do activities of daily living, such as taking a bath or dressing oneself;
  • Reassuring them when they are uncertain how to do things;
  • Providing a “comfort zone” in the home where they feel safe and secure;
  • Redirecting them when they get confused;
  • Comforting them when they cry or are fearful;
  • Detecting their pain when they are distressed;
  • Accepting the reality of this disease.

“Seeing clearly with the heart” is an attitude that requires cultivation and practice. Here is a reflection that may help:

At the end of each day or most days, find a quiet spot. While focusing on your breathing, try to become at one with your surroundings. Take a moment and scan over your day.

Remember all the love and support you received. Think of each person who entered your life, one way or another, near or far. Think of the acts of love you received, no matter how small; e.g., the stranger who held the door open for you as you left the supermarket. Include your pets, the bird that was sitting on a branch in your backyard chirping away, diffusing your feelings of frustration or anxiety.

Think of one moment, even though it might be fleeting, of the love you received from your Loved One. Hold on to that feeling for a few moments and become aware of how it transcends all the other experiences.

For those who live far away, feel their presence and their love for you, and how they continue to express their love for you. On special anniversaries, remember those who have died and the love they have given you.

And finally, recall your own acts of love that day, no matter how small or simple, like taking time out of your busy schedule to fill the birdbath with water on a hot summer day.

At the very end of this exercise, try to identify what has been the value of this experience for you. How can you integrate this into your daily life?

In this season of spring, Easter, and Passover, may we look at life and our loved ones with new eyes and a renewed heart! I wish you peace, patience, and joy in your caregiving journey!

*  *  *

Many thanks to my friend and mentor, Merle Stern, for composing the reflection on love.

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This is a short video about an experiment of looking at loved ones with new eyes: https://youtu.be/VsojBgHqeg4. I guarantee it is a tearjerker.

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Here is the opening song, “Somewhere Only We Know,” to a film made about The Little Prince: https://youtu.be/ATiJ7i8m8rY. This movie clip is when the tamed fox, played by Gene Wilder, gives his secret to The Little Prince: https://youtu.be/FOA7CcVOFIs.

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Compassion and Empathy are Caregiving Essentials

Last year I took the time to re-read one of our modern day classics, To Kill a Mockingbird, by Harper Lee. It was published in 1960 and won a Pulitzer Prize. There is a passage from the novel that continues to linger in my mind. It’s when Atticus Finch imparts this piece of wisdom to his daughter Scout: “You never really know a man until you understand things from his point of view, until you climb into his skin and walk around in it.”

Footprints in the Snow

Footprints in the Snow

Another great American author and poet, Henry David Thoreau, puts it this way in Walden: “Could a greater miracle take place than for us to look through each other’s eyes for an instant?”

I’ve reflected upon these passages for quite a while. As a caregiver, is it really possible to climb into another’s skin and imagine what it’s like to be them? Can we really experience their world from their perspective? How might it change the way we manage from day to day if we could?

To me, these two quotes cited above refer to the qualities of compassion and empathy. Compassion is that human emotion in us that is prompted by the pain of others, and one that gives rise to our desire to alleviate another’s suffering. Empathy is a learned skill that takes practice. Both qualities can become second nature. They are vital in developing an understanding of our loved one’s behaviors, frustrations, and daily challenges. These qualities help us cope and negotiate with the world from our loved one’s perspective, not ours.

When I was in training to become a counselor, I was blessed to have two marvelous co-directors of the program that I attended at St. Paul University, Ottawa. Merle Stern and Rev. Adrian Visscher, SCJ, became my mentors and good friends over the years. Part of my training involved experiential exercises. These sessions were intended to sensitize us to what people who seek counseling might be experiencing in their troubled lives. This training enabled us to develop our skills so as to become compassionate and empathetic counselors.

Despite professional training, I must confess that my years of caring for Mom were still challenging ones. At times, I thought I was failing her, but by trying frequently to imagine what the illness and the world were like for her, I grew in wisdom, compassion, and empathy. It also helped give me more patience and strength to deal with the daily stresses. Caring for Mom redefined my entire being for the better.

If you have had similar experiences, I invite you to try this exercise below, visualizing in your mind that you are your loved one with the dementia.

EXERCISE

(Adapted from a Reflection written by Merle Stern)

Find a quiet place…Close your eyes…Focus on your breathing.

Let your mental state become calm and relaxed.

Visualize yourself for a moment crawling into the skin of your loved one.

You are wearing the familiar clothing of your loved one, sitting in the same manner.

You are living in a body you do not recognize as your own.

You have no memories from one moment to the other.

You have memories from way back, but you are unable to plug into these memories on your own.

Sometimes when someone triggers those memories, it feels like light shining in the darkness.

Everyone around you seems like foreigners; in fact, you feel like a foreigner to yourself.

You do not know who you are.

When you hear your name, at times you do not know it is your name.

You feel disconnected from everything and yourself.

It is a strange world in which you live–no connections–no benchmarks. 

Feel what it feels like to live this every moment of your waking day.

Gradually phase out this experience…focusing on your breathing.

Gradually feel yourself moving into your own space.

Take a few moments now to reflect on what has been the value of this experience for you. How will you be able to use it? Visualize a moment when you could have used the insights gleaned. Return to that experience and replay the same scenario with your coming from where you are at this moment, and the insights you have gained.

What has been the value for you? How do you think this will be of value now in your interactions with your loved one? If you keep a journal, you may want to write about the insights you have gained.

Compassion and empathy will not drain, but will enliven you! Inadequate as you may feel at times as a caregiver, remember that you have phenomenal strength, and a capacity to be compassionate and empathetic under the most stressful moments.

Sunday is Valentine’s Day, a perfect time to take a few minutes to reflect on what makes your caring meaningful and not burdensome. There may come a time in the stages of dementia when your loved one may not remember you, or be able to call you by name. The important thing is that YOU remember your loved one and the person he or she once was.

I’d like to end with this quote, author unknown: “To love someone is to learn the song in their heart and sing it to them when they have forgotten it.”

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love pixabay-1125204_640For two weeks, starting midnight, Sunday, February 14, Valentine’s Day, I am hosting a contest on the website “Goodreads.” Log on for a chance to win a free copy of my new book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s and Devotion. I will even autograph the book. The contest will end at 11:59 PM, Sunday, February 28. Click on this link to take you to my website’s News and Events page for more information. Then click on the title to take you to the Goodreads page. Remember—the contest will not begin until Valentine’s Day!

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Bill and Glad have been married for 50 years. Glad was diagnosed with Alzheimer’s. Bill talks about his love for her in this short video, “What is Love?” Take a look: https://youtu.be/GH5n9lVZcM4

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The Social Care Institute for Excellence has come out with a series of videos about dementia. “Dementia from the Inside” is a seven-minute video that gives the viewer a feeling and perspective for what it must be like to have dementia: https://youtu.be/Erjzl1WL8yQ.

*  *  *

This Valentine’s Day, celebrate your years of loving, even though your loved one may not be able to do so. If you are caring for your spouse, take time to watch and listen together to “One Hand, One Heart.” This song is from the 1961 Academy Award winning musical, inspired by Shakespeare’s play, Romeo and Juliet: https://youtu.be/_A0fVWomF90. It’s a  musical /visual Valentine’s Day card.

A Good Night’s Sleep Yields a Healthier Brain

Since ancient times, the Ojibwa Indians understood that restful sleep was a good thing. They made dreamcatchers of twigs, sinew, and feathers for their newborn children.

Dreamcatchers

Dreamcatchers

Then they hung them above the cradleboard to give infants peaceful dreams. The belief was that “good” dreams descended down through the feathers to the sleeping infant. “Bad” dreams were trapped in the web, and evaporated like the morning dew when the sun rose in the morning.

Unfortunately, dreamcatchers may not be effective when it comes to persons afflicted with Alzheimer’s. The disease is characterized by frequent sleep disturbances. This affects not only the person with dementia, but also the caregiver. The disease seems to “reset” the internal biological clock of an Alzheimer’s patient. They may stay up all night. They may wake up to go to the bathroom and become disoriented or confused. They may wander through the house, or try to go out. When they are restless during the night, they will feel lethargic during the day.

Sleep is vital for keeping our brains healthy and disease-free. Researchers tell us that adults (26-64) need seven to nine hours of sleep, while older adults (65+) need an average of seven to eight hours of sleep each night. While we sleep, the brain is busy “flushing” away the toxins that have built up during the day, including toxins that form Alzheimer plaques. Cerebrospinal fluid that is normally outside of the brain begins to re-circulate back into and through the brain, along the outside of blood vessels.

It is important when your loved one can’t sleep, to try to determine if they are in pain, or have a bladder infection, or prostate problem. Some medications also have side effects that cause sleeplessness. Use caution when it comes to giving your loved one sleeping pills. These pills may counteract the side effect of other medications. Sedatives can exacerbate your loved one’s confusion and increase their risk of falling.

Here are several tips to help your loved one get adequate sleep. What you do during the day affects how your loved one will sleep at night. It is important that you establish a daytime routine complete with physical activity and exercise. Exercise will improve sleep quality and quantity. Just avoid or decrease evening exercise, especially close to bedtime.

Keep your loved one busy, active, and awake during the day with social, mental, and physical activities.  Adult day centers are wonderful facilities for keeping people with Alzheimer’s active.

Expose your loved one to natural or artificial light ideally between 6 AM and 9 AM. This helps reset their “internal” clock. Encourage your loved one to get an hour of bright sunlight and fresh air every day, if possible.

Avoid giving your loved one foods and beverages that contain caffeine, and restrict sweets and alcohol. Serve dinner early, and offer a light meal or snack before bedtime.

Try to maintain a regular sleep schedule and routine: the same bedtime, same wake-up time, same nap time each day. Moderate and limit daytime naps to thirty minutes, preferably before 2 PM. Nighttime routines, like drinking warm milk or brushing teeth signal that it’s time for bed. One of my Mom’s routines at bedtime was to slather Oil of Olay on her face after washing it.

Sometimes people with Alzheimer’s will not sleep in their beds. They prefer to sleep on a favorite chair or on the couch. If necessary, allow them to sleep there. It is better than having them not sleep at all.

Leave a small night light on in their bedroom. Also leave the bathroom light on and maintain a clear pathway. Get your loved one up once at night if toileting is necessary. Speak softly and quietly, in a reassuring tone of voice.

Now, here are a few recommendations for your own restorative sleep. Don’t try to do a lot of chores before bedtime. Don’t drink a beverage with caffeine for six to eight hours before bed. Budget a “pre-sleep” period of at least a half hour before sleeping to turn off the TV, radio, or computer before you have lights out. Turn the clock away from your bed. Make sure your bedroom is cool, dark, and quiet. The best sleeping position for brain health is on your side. Lastly, don’t allow yourself to worry about problems just before falling asleep. Write a blessing of the day in a journal, and think positive thoughts.

Let me end with a lovely quote by Maya Angelou: “Let gratitude be the pillow upon which you kneel to say your nightly prayer.” Sleep tight and have a good night!

*  *  *

I wrote a poem about “Bedtime.” It is included in my published memoir, Elegy for Mom. I’d like to share it with you.

Bedtime

I came early one evening

to check on Mom after her illness.

She looked so sweet, so frail in bed

in her soft pink nightgown.

The roles seem reversed

as I tucked her in,

pulled up the covers,

and gently kissed her on her cheek.

She giggled.

“Good night, sleep tight!

Don’t let the bed bugs bite…

May the angels take you

to the realm of pleasant dreams,

my dear, sweet mother.”

She giggled.

 *  *  *

For science-based sleep tips, visit https://sleep.org, and https://sleep foundation.org.

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The fairytale opera, Hansel and Gretel, by 19th century composer Engelbert Humperdinck, has a beautiful bedtime benediction put to music. It invokes the angels to look after the two young children while they sleep. My parents loved listening to a young singer, Charlotte Church. Here she is singing this “Evening Prayer,” from Act 2: https://youtu.be/yM_RwW0MYGA

*  *  *

If you would like to make your own dreamcatcher, here is a six-minute tutorial from SeaLemon: https://youtu.be/UbgZ-uDAmAM

Self-Care Is a Necessity

Smokey the Bear was a mascot created in 1947 to educate the public about the dangers of wild fires. His slogan was, “Remember…only YOU can prevent forest fires.”

Fire

Fire

I consider chronic stress as a “wildfire” that can take over a caregiver’s health. That is why I emphasize that self-care is a necessity for caregivers, not a luxury! Caregivers typically experience chronic stress day in and day out over long periods of time. The caregiver’s life increasingly fills with demands and interruptions. It is imperative that you must do things that are helpful and healthful, or you will not be able to manage for the long haul.

Here are some symptoms of caregiver stress:

  • Feeling overwhelmed
  • Caregiving gives you little satisfaction
  • Sleeping too much or too little
  • Gaining weight or losing weight
  • Irritability and resentment
  • Chronic sadness
  • Frequent headaches or health problems
  • Having trouble relaxing or concentrating
  • Loss of interest in favorite activities
  • Abuse of alcohol or drugs
  • Views self as victim and sometimes as a martyr
Forest Fire

Forest Fire

What can you do to counteract these symptoms? First, protect your own health. Set personal health goals; e.g., a sleep routine, healthy meals, time out for yourself. Speak to your family doctor. Make sure you have regular physical checkups to determine if there are any physical issues that need to be addressed.

Second, keep in contact with family and friends. Let them know what is going on in your life. Caregiving can be pervasive, but you can’t let it be all-consuming. At times you may feel like you are too tired to engage socially. However, you need to interact and have a social life. Set up respite care, even if only for a few hours each week, just to give yourself a break. Check out the website, “LotsaHelpingHands.com,” to organize meals, rides to medical appointments, and visits.

Third, plan for regular exercise each day. Caregivers who exercise regularly have less depression. One hundred fifty minutes of exercise a week is the gold standard. If you cannot go outside for a walk due to bad weather, try a power walk around your house. Start for five minutes, then work up to ten and fifteen minutes. Find an exercise routine on YouTube and work along with it for twenty minutes.

Fourth, find a support group to attend. The more you understand about the progression of the disease, the better able you will be to cope. If you can’t leave the house, there are resources on the internet that connect you with groups of caregivers who understand the stresses. There are also training videos to watch on the internet. Call the Alzheimer’s Association 24/7 helpline (1-800-272-3900) when you are in need of information. Their highly trained and knowledgeable staff can help you with:

  • Understanding memory loss, dementia and Alzheimer’s
  • Medications and other treatment options
  • General information about aging and brain health
  • Skills to provide quality care and to find the best care from professionals
  • Legal, financial and living-arrangement decisions.

The Alzheimer’s Association 24/7 Helpline also features:

  • Confidential care consultation provided by master’s level clinicians who can help with decision-making support, crisis assistance and education on issues families face every day
  • Help in a caller’s preferred language using their translation service that features more than 200 languages and dialects
  • Referrals to local community programs, services, and ongoing support.

I encourage you to join my presentation, “A Trove of Tips for Managing Caregiver Stress,” on January 19, 7:00 PM (EST). This free one-hour webinar is sponsored by fellow blogger Mike Good and his website, “Together in This.” You can register at: http://tintcaregiverstress.webflow.io/.

Remember, only YOU can provide self-care and prevent caregiver burnout!

 *  *  *

 If I had to pick one song that always calms me down, I would choose, “Gabriel’s Oboe,” by Ennio Morricone, from the movie, “The Mission.” See if it has the same effect for you: https://youtu.be/Dxxg6NenmBQ.

 *  *  *

Grateful living is one of the most valuable things that can be given to us. Brother David Steindl-Rast, OSB, discusses the connection between happiness and gratefulness in a 2013 TED Talk. His formula for our practice of gratefulness is: stop, look, go. Listen to his fifteen minute presentation: www.gratefulness.org/resource/want-to-be-happy-be-grateful.

I wish you peace, joy, patience, and courage in your caregiving journey! 

 

A New Year – A Healthier You

Welcome to a new year for loving deeply! Traditionally, New Year’s Day is a day of new beginnings, of resolutions and intentions.

Aurora Borealis

Aurora Borealis

I’m a failure when it comes to keeping New Year resolutions! I’ve tried the “losing weight and exercising more” resolution more times than I care to admit. What I realize with each passing year is that “time” is a precious gift. “Today” is all we can really count on with any certainty. Although it’s not strictly a resolution, I strive now to make every day count, and to cherish the “small stuff” in life.

As caregivers, I hope you savor those moments when things go well for you and your loved one. I hope you mark your daily triumphs, not focus on what didn’t go well that day. If you don’t, you may begin to feel that your efforts are meaningless. You made it to another year, but at what cost to you? We want to do what is best for our loved ones, but often to the detriment of our physical, emotional, and spiritual well-being.

Tragically, statistics tell us that about one third of caregivers burn out, get sick, and die before the loved ones they are caring for do.  (Agingcare.com) This was the case with my father.

The fourteenth century Sufi mystic and poet, Rumi, gives a marvelous poetic image to caring for ourselves and others: “Copper doesn’t know it’s copper, until it’s changed to gold. Your loving doesn’t know its majesty, until it knows its helplessness.” (Coleman Barks, trans., The Essential Rumi, 1995.) Turning copper into gold comes from the medieval tradition of alchemy.

Saindak Copper & Gold Mine, Saindak, Balochistan

Saindak Copper & Gold Mine, Saindak, Balochistan

Alchemists experimented with how to transform base metals into gold. Often the times when we feel so helpless against the disease of dementia is when we discover the deepest sources of our loving. But this discovery and staying power take strength, patience, resilience, and good health on the part of the caregiver.

Therefore, I’d like to put forward three resolutions for your consideration in 2016. One, be more gentle with yourself and explore befriending yourself this year. I like to call it developing “self-compassion.” Remove the personal barriers to self-care and self-compassion by identifying what is in your way. Do you think you are being selfish if you put yourself first? Do you have difficulty asking for what you need? If you ask for help, do you feel inadequate? If your compassion does not include yourself, it is incomplete.

Two, make your physical and mental health a priority, Make sure that you have your regular physical checkups. Find the time, even if it is a half hour or hour a day, just for your mental and social well-being. When I was caring for my mother, I learned that I needed to look after myself in order to give her my best self.

Three, seek respite care, and join a support group, if you don’t already have one. Chances are you find yourself so busy during the weeks that you remove yourself from interacting with others. There are endless challenges in being so close to those whose mind is going, and who can’t care for themselves. It will be extremely difficult and stressful to get through this on your own for the long haul.

Check your local chapter of the Alzheimer’s Association or Area Agency on Aging to find support groups that meet throughout the year. These are often led by a professional counselor. You can also plug into social networks. Internet tools and websites let caregivers vent, get helpful information, and even ask for assistance from others. Join a Facebook community. Four of the ones I am familiar with are: USAgainst Alzheimer’s, CaregiverMonday, UnpreparedCaregiver, and Family Caregiver Alliance Caregiver Online Group.

CaregiverMonday.org is an initiative of the nonprofit Monday Campaigns. It emphasizes that the key to staying healthy is to carve out a dedicated time at the beginning of each week to focus on tools to keep healthy habits consistent. A good habit to form is to use Monday as a checkpoint in time to remind yourself of what you have done for yourself lately. Again, whether it’s a half hour or five hours, it really doesn’t matter, as long as you take some time to refresh yourself each week.

Consider registering for a free webinar in January on helpful tips to manage stress in the new year. I will be partnering with another blogger, Mike Good, as his featured presenter, Tuesday, January 19, at 7:00 PM (EST). His website is “Together in This.” You have to register to participate. Here is the link to the registration form (http://tintcaregiverstress.webflow.io/.

There will be unexpected challenges and setbacks, fresh goals and accomplishments in the coming year. No matter what you might encounter, remember to look after yourself in order to give your best to your loved one. The German poet and philosopher Johann Wolfgang von Goethe wrote, “We must always change, renew, rejuvenate ourselves; otherwise, we harden.”

May each day of the coming year be filled with “golden” moments to celebrate! May you find support, comfort, peace of mind, and strength of body and soul for a healthier you!

*  *  *

Much of everyday life may feel beyond your control at times. All you can really control is your attitude, and the way you take care of your own health. To help release all the tensions of 2015, and start 2016 with new energy and vitality, listen to my favorite Piano Guys performing Vivaldi’s “Winter,” and Disney’s “Let It Go.” (thepianoguys.com/portfolio/let-it-go)

 *  *  *

For information on self-compassion, and to test how self-compassionate you are, check out this link from Center for Mindful Self-Compassion: self-compassion.org/test-how-self-compassionate-you-are.

You Are a Gift!

Traditions and memories are part of the joy and glory of living. Perhaps that is the reason we find ourselves trying to recapture them years later.

Sharing the oplatek

Sharing the oplatek

In my family, Christmas was a time for celebrating many Polish customs, like the sharing of the oplatek, a wafer, greeting one another around the dinner table with a wish for health, happiness and good fortune. Another custom was waiting for the first evening star before beginning the Christmas Eve dinner. It was saving a little bit of each entrée on our plate to give to the birds and animals. We sang carols around the crèche, and attended Midnight Mass. Come to think of it, I don’t remember many of the gifts I received as a child. But the warm memories of love and joy with family are the ones that remain with me to this day.

This time of year can be stressful for caregivers and family members. It is common to experience a sense of loss for the way things used to be. It is also easy to slip into a guilt trip about what you think you should do or how you should feel.

Caregiving is a tough job! It isn’t realistic to expect that you will have the time or the energy to participate in all the holiday activities that you once did.  You can still find meaning and joy for you and your family. Here are a few suggestions to help relieve some of the stress and to build new memories.

First, adjust your expectations and set realistic manageable ones. You know best the level of functioning your loved one is at, so determine what will be most meaningful to you and your loved one. Think about what traditions and activities you will truly enjoy. Trust your instincts. Resist the pressure to celebrate in the ways others might expect you to.

Second, communicate early with family members and friends by preparing them for what to expect. Update them on the status of your loved one’s health. You can do this by a telephone conference call to discuss the celebration, or by letter, e-mail, or Skype. Delegate tasks. You don’t have to do it all. Perhaps this year plan a potluck where everyone brings their favorite dish, or let someone else host the dinner.

Third, try to plan for a slow-paced and somewhat “quiet” gathering or small get-togethers. A calm and quiet environment is usually best for a person who has Alzheimer’s. Hold it in the most familiar setting. If you host it at your home, try to keep daily routines in place. If your loved one lives in a facility, participate in the activities planned for the residents.

Fourth, make preparations together. Let your loved one help you bake, wrap presents, or open holiday cards together. Tone down your decorations, as blinking lights and large displays can cause disorientation. Plan for one of your children, a relative, or a friend to stay with your loved one while you do holiday shopping or attend a holiday party.

Fifth, schedule visits when it is the best time of day for your loved one to enjoy the company. You might suggest that a few family members come on the holiday eve, while others come on the holiday itself. Children add joy to the holidays. Involve youngsters by preparing them for no loud crying or screaming.

Lastly, remind yourself that the true spirit of the holiday is LOVE! Think about what your loved one’s life would be like if you were not there to do what you do. You are a gift, not just at the holiday season, but year round! There is a wonderful expression: “To the world you are one person, but to one person you are the world.”  Take care of your needs during this season. Caring for yourself is not being selfish. It’s being wise and selfless.

May peace and happiness brighten your holidays and remain with you throughout the coming new year!  From my family to yours, as we say in Polish, “Wesolych Swiat Bozego Narodzenia!”

You are a gift!

You are a gift!

   *  *  *  *

A Holiday Carol

Lately in the news, there seems to be little in the world that is calm, merry, or holy. To help celebrate the season and remind us that there is hope and beauty all around, here is a favorite Christmas carol of mine. It is a version of “Silent Night,” sung by Placido Domingo, with the Cathedral School Choristers, and accompanied by The Piano Guys.

http://thepianoguys.com/portfolio/silent-night-feat-placido-domingo/

 

 

 

My Caregiving Pilgrimage

“Cobwebs in my mind,” was Mom’s depiction of the disease. It was her answer to my question of what it felt like to have dementia. That image remains seared into my heart to this day.

Spider Web Photo by Jenny Downing

Spider Web Photo by Jenny Downing

Here are a few more descriptions of others’ experiences living with dementia. Dr. Richard Taylor was a psychologist and founding member of Dementia Alliance International. He passed away in June from cancer. Dr. Taylor described his illness as a veil, a curtain hanging over the window of his world. “Right now, I feel as if I am sitting in my grandmother’s living room, looking at the world through her lace curtains…There are large knots in the curtains, and I cannot see through them.” (Alzheimer’s from the Inside Out)

In her book, Dancing with Dementia, Christine Bryden, dementia survivor, and advocate for the rights of those with dementia, writes about how dementia might look to others. She uses the image of a swan, serene and calm on the water’s surface. However, its legs are

Swan on lake

Swan on lake

paddling a thousand times faster underneath the surface to make things “look okay” to others.

Kate Swaffer, Australian author, another dementia advocate, and a blogger, was diagnosed with semantic dementia while in her forties. She describes her illness this way: “My thoughts fly around inside my head like helium balloons high inside an auditorium.”

 

I was blessed to be the family member who was Mom’s primary caregiver for three years, following Dad’s sudden passing in 2003. In caring for her, I tried to imagine what living with the disease was like. A favorite fictional character of mine, Atticus Finch, says it so well in the book To Kill a Mockingbird: “You never really understand a person until you consider things from his point of view…until you climb inside his skin and walk around in it.”  Like so many of you reading this blog, I was not “just” a care partner. I became Mom’s companion and advocate, attempting to help make her journey through the disease easier, to minimize her suffering as much as possible. My caregiving turned into a pilgrimage, a spiritual journey of the heart and soul, bringing me closer to my parents, my family, and discerning my values in life.

In those years when I took care of Mom, there were not as many resources as there are today. I promised myself that if I ever had the opportunity to share my experiences to assist families like mine, then I would do so. “All sorrows can be born if you tell a story about them,” writes Karen Blixen. My memoir, Elegy for Mom, a Memoir of Family Caregiving, Alzheimer’s, and Devotion, is the result of that promise.

Author Natalie Goldberg advises those who write memoirs: “Write what disturbs you, what you fear, what you have not been willing to speak about. Be willing to be split open.” I attempted to write what I feared and what disturbed me, but also what blessings I discovered along the journey. If this book will help even a few families who read it, then it will have achieved its purpose.

The official publication date of my memoir is November 7, my birthday. My book is now available for purchase through this website. I offer it in tribute to my parents, Sophia and Frank, who continue to inspire me as I travel on this pilgrimage called life.

I wish you peace, patience, compassion, and courage in your caregiving today and everyday!

 *  *  *

I am an admirer of Kate Swaffer and follow her blog, “Creating Life with Words: Inspiration, Love, and Truth.” A few years ago she made a two-minute video of her feelings shortly after being diagnosed with semantic dementia. You can watch her video “Kate Swaffer – Dementia: My Story,” here: https://youtu.be/9ZUyIRq5DAs .

 *  *  *

The inspiring background music to Kate Swaffer’s video is one of my favorite concertos, Rachmaninoff’s Third Concerto. My parents fostered my love of classical music. Here is the great pianist Vladimir Horowitz performing in concert in New York, 1978. The orchestra is under the direction of Zubin Mehta: https://youtu.be/D5mxU_7BTRA.

*  *  *

Dr. Don Hayen is a retired doctor and former medical director of an HMO. He was diagnosed with Alzheimer’s disease in 2005, at age 71. Over the past two years, Don has coped well with the disease — so well he’s been unable to meet the requirements to take part in clinical trials of experimental Alzheimer’s drugs. But his wife, Jane, noticed his decline. Listen to what he has to say about the importance of getting an early diagnosis: https://youtu.be/uAlkCMfTASQ.

It’s a Marathon, not a Sprint!

It was the spring of 2000 when my Mom underwent neurological testing at our local Memory Disorder Clinic. She was having cognitive difficulties for about two years prior to the testing.

Cross Country Runners

Cross Country Runners

Her family doctor had attributed her difficulties to TIA’s. TIA’s (transient ischemic attacks) are sometimes called mini-strokes. These extensive tests at the clinic confirmed that Mom had vascular dementia, as well as “moderately severe cognitive decline.” The neurologist pointed out that there was a “high probability” that this dementia was Alzheimer’s. Six years later an autopsy confirmed that Mom did indeed have both forms of dementia.

According to Healthline.com and John Hopkins School of Public Health News : “Life expectancy varies for each person with Alzheimer’s disease (AD). The average life expectancy after diagnosis is eight to ten years. In some cases, however, it can be as short as three years or as long as twenty years. AD can go undiagnosed for several years, too. In fact, the average length of time between when symptoms begin and when an AD diagnosis is made is 2.8 years.”

Caregiving is too big a “job” for one person. A friend of mine compares caregiving to a marathon. He noted that marathon runners usually receive water to drink from onlookers in order to restore their fluids and keep their balance. So too, caregivers need to slow down at times, and “receive” sips of nurturing and respite from others. Using this analogy, consider caregiving as a “team” support effort. Build a team of family, friends, co-workers, and professionals. If your family members are not willing or can’t get involved for whatever reason, then create a family of “choice.”

Cultivate the gift of allowing others to help you. Increasingly depend upon other relationships for love and support. You cannot always be on the “giving” end. The act of receiving is critical for caregivers’ well-being and physical health if you want to remain active throughout the journey.

My caregiving marathon was unlike any prior experience. Every day was an education and sometimes a real eye-opener. I learned that, while I couldn’t control the disease process, I could control many aspects of how it affected me, and how I had a duty to take care of myself. Looking after my own health and wellbeing was critical. Otherwise, I wouldn’t be any good to Mom or to my husband and family, let alone be able to function at my job.

If you decide to care for your loved one at home, be prepared for the myriad of losses, but also the numerous joys and blessings that come your way. It is a lot harder for the person living with dementia than for you. Circumstances may also arise that make it impossible for you to care for your loved one at home. You will still need to be the caregiver, ensuring that his or her needs are met in a different environment.

Signpost

Signpost

Here are some steps for caregivers that have been passed down through websites* and blogs. I hope these will sustain you as your marathon unfolds:

  • Simplify your lifestyle so that your time and energy are available for things that are really important.
  • Structure your day. Develop routines and predictable schedules to make life easier for you and for your loved one.
  • Worry only saps your energy. Take one day at a time. Try not to worry about what might happen in the future.
  • Have a back-up plan such as pre-arranged respite care, or a friend or relative to call on when you have an emergency or illness strikes.
  • Keep your sense of humor and have fun. Laughter helps to put things in a more positive perspective. Plan for outings and things that you both like to do.
  • Remember that your loved one is not being “difficult” on purpose. It is the disease that distorts his/her behavior and affects his/her emotions.
  • Try to see their “world” as if you were in their “shoes.” Remember that your loved one is so much more than the disease.
  • Focus on and enjoy what your loved one can still do. Do not lament over what they can’t do anymore.
  • Try to remember their love for you when they can no longer remember.
  • Take a deep breath! Remind yourself that you are doing the best you can at this moment.
  • Understand your own physical and emotional limitations. Give yourself frequent breaks from caregiving. Even an hour a day is a big help.
  • Get regular physical exams. Do not let your health deteriorate.
  • Join a support program and learn all you can about the disease.
  • Draw upon whatever Higher Power you believe in to sustain you in the good times and the trying times.

I wish you peace, patience, and courage in your caregiving today and every day of your marathon.

 

 *  *  *

*Carol J. Farran, DNSc, RN, and Eleanore Keane-Hagerty, MA, wrote an article with an adaptation of these items in 1989. It was printed in The American Journal of Alzheimer’s Care and Related Disorders & Research.

*  *  *

I will be joining others in a 2.5 mile “Walk to End Alzheimer’s,” Saturday, October 24, in Hollywood, FL. I hope those of you who live in the tri-county area can join in this fundraiser. We walk so that someday soon researchers may find a cure! If you want to be part of my team, or make a donation in support of the Alzheimer’s Association, e-mail me and I’ll send you details: Vicki @CaregiverFamilies.com.

In Remembrance of My Father

The Feast of the Guardian Angels is observed in the Catholic Church on October 2. Celebrations of this feast go way back to the 11th century.

18th cent. Painting of a Guardian Angel Unknown Artist

18th cent. Painting of a Guardian Angel
Unknown Artist

Devotion to the angels is an aspect of piety. Their role is to represent us before God, to watch over us, to aid us in prayer, and to finally present our souls to God at death. One of the first prayers I learned as a child was the prayer to my guardian angel: “Angel of God, my guardian dear, to whom God’s love commits me here. Ever this day be at my side, to light and guard, to rule and guide. Amen.”  This prayer was a comfort to me when I was young, and I still often pray it to this day.

 

Coincidentally, October 2, is a special day of remembrance in the life of my family. It is the twelfth anniversary of our Dad’s death. The night before, on his doctor’s advice, I had taken Dad to the local hospital’s emergency room to take care of a health issue that was NOT deemed life threatening. Dad was admitted for overnight care. I can still vividly remember the doctor’s phone call, waking me from a deep sleep in the early hours of that morning: “I’m so sorry to tell you that your father just passed away.”

My Dad Frank as a young man

My Dad Frank as a young man

Frank was a true gentleman, a devoted family man. When we were growing up, like many fathers of that era, Dad sacrificed, working three jobs at times to keep us fed, clothed, secure. Dad was a joker. He loved to laugh and tease his children and grandchildren. He imbued his family with a sense of justice, fairness, good humor, and good will towards all.

Mom was the “light of his life.” He was her relentless guardian, no more so than in her later years as she dealt with the personal challenges of Alzheimer’s. Dad never complained of his duty as caregiver. He always seemed worried of what would become of her when he passed, and looked to his three daughters and two sons for reassurance that she would be well cared for after he was gone. Dad was a gift and a blessing to all who met him and came in contact with him. He lives on in the memories and hearts of his family and friends.

I like to think that on the Feast of the Guardian Angels, when he passed away from us so suddenly without warning, angels came to accompany him, and presented his soul before the God whom Dad served and loved all his life. Dad was ninety years old.

"Angel Weeping" Photo by my sister, Marcia Petravicius

“Angel Weeping”
Photo by my sister,
Marcia Petravicius

His funeral Mass was October 6. The priest celebrant ended the service with the words of the rite of Christian burial: “May the angels lead you into paradise; may the martyrs come to welcome you, and take you to the holy city, the new and eternal Jerusalem.”   

I read a statistic recently that indicated thirty percent of caregivers die before the people they’re caring for do. A study by the Office on Women’s Health found that “elderly people who felt stressed while taking care of their disabled spouses were sixty-three percent more likely to die within four years than caregivers who were not feeling stressed.”  The bottom line is that if you, as a caregiver, find and receive assistance to maintain your own health, you will be less likely to die prematurely or need long-term care for yourself.

My prayer today is that all of you who care for loved ones will be blessed with the strength, courage, humor, and patience that you need in your day-to-day lives. May you have the wisdom to reach out for support from others before your burden gets too heavy to bear!

 *  *  *

I composed a poem in honor of my father. It will be printed in my upcoming memoir. I’d like to share it with you. Hopefully it gives you a sense of the wonderful, gentle, loving man that he was.

A New Kind of Lovemaking

 What is true love?

Love, in my experience, is

Dad holding Mom’s hand tenderly

as they stroll down the long corridor,

he with cane in hand,

heading to the facility’s dining room,

giving her confidence she won’t get lost.

 

Love comes into play

when Dad orders her meals,

knowing just how she likes her meat cooked,

her vegetables prepared.

Then he entices her,

teases her to eat up all her food

so she could enjoy that luscious dessert.

 

Love appears when

Dad remains calm and patient

as he helps Mom search for her purse,

to uncover where it’s hidden,

perhaps buried beneath clothes in a dresser drawer,

or misplaced in the kitchen’s refrigerator.

 

An intense bond of love shines forth daily

when Dad counts out pills Mom needs to take,

giving them at just the right time,

making sure she’s swallowed them,

not tucked them in her cheek like a child

waiting to spit out when he turns away.

 

Love occurs when

Dad conscientiously pays their bills on time,

keeping records of all financial dealings,

planning so their funds hold out, not dry up,

worrying they will outlive their assets

and become a “burden” on their children.

 

A lesson in love is

Dad giving his all,

putting his needs, wants, and health second to hers,

as they deal with the many challenges

that life and aging placed in their paths.

If these aren’t examples of true love,

then I don’t know what love is.

*  *  *

“The Prayer,” sung by Josh Groban and Celine Dion is one of my favorites. One of the lines goes: “We ask that life be kind, and watch us from above. We hope each soul will find another soul to love.” Dad and Mom certainly found their soul mates. I invite you to listen to the song:  https://youtu.be/DbviXG_56ss

*  *  *

The Judds have a song called “Daddy’s Hands.” It reminds me of the inner strength and love of my father. You can listen to it here: https://youtu.be/pl4N1i7Femw

 

 

Talking about Alzheimer’s to Children and Teens

Your children are your life’s masterpieces. When a parent or grandparent is diagnosed with dementia or Alzheimer’s, a child’s world can become unhinged and upsetting, especially if they don’t understand what is happening. This disease changes the lives of all family members, including youngsters and grandchildren.

Children can be understanding and caring.

Children can be understanding and caring.

Everything you share with love and sincerity will help your children and grandchildren cope and become kind and compassionate people.

I was director of a social service agency in Michigan from 1985 to 1994. I developed a four-week support program for children and their parents who were going through divorce. Children often blame themselves for the divorce. My purpose in designing this program was to help parents talk to their youngsters, to give them basic age-appropriate information about what was happening. This program became a model for the local divorce court judges to refer families when couples filed for divorce. I’d like to share a few of these program’s principles, and apply them to informing your child and teen about Alzheimer’s disease.

Children are resilient, understanding, and caring if they have an explanation about the disease to the degree that they can understand. You may think you can hide stress and anxiety from them. You can’t! Youngsters are smart and intuitive. Not sharing information can magnify their fears and self-blame. Be straightforward and keep it simple. Young children don’t need all the technical details of the disease and how it impacts the brain.

Tell them that Alzheimer’s is an illness that causes  important nerve cells in the brain to die. This disease will affect the person’s ability to remember things and think clearly. The disease is not contagious, so they don’t need to be afraid they will “catch” it. As the disease progresses, they may notice some changes in behavior, like the person’s inability to concentrate and communicate, or remain patient. Unfortunately, there is no cure yet, but let children know that researchers are working diligently to find one.

A child's love brings joy!

A child’s love brings joy!

Instill the idea that the disease is not the person. If their parent, or grandpa or grandma becomes angry and frustrated, it doesn’t mean they don’t love the child. It’s the illness that is causing this behavior. Encourage the child to be patient. Their grandparent or parent can still feel joy, sadness, and love, and can still give love. The child just needs to love them in return, and enjoy them as they are now, and in the future.

Teens can take in more information about the disease, and how the areas of brain function or not over time. They can understand that, as Alzheimer’s progresses, the brain no longer has the ability to make or store new memories. It might be helpful to relate the disease to computer terms. As far as the brain is concerned, a well-functioning one stores an experience like a computer on automatic “save.” When a brain is affected by Alzheimer’s, that new experience is not always saved as a memory. Persons with Alzheimer’s often live and function within memories from the past.

Let youngsters talk openly about their fears and feelings. Make sure to answer honestly any question your child or teen may have. If you don’t know the answer, tell them that.

Encourage your children and teens to maintain an active relationship with their loved one diagnosed with the disease. If you live far away, perhaps you can organize and set up times for them to Skype regularly. Telephone contacts may also be an option, especially when the loved one is in the early stages of the disease and feels comfortable speaking on a phone.

If you will be taking your children to visit a loved one in a care facility for the first time, prepare them with what they might see. People in wheelchairs or connected to oxygen tanks may look scary to young children.

In advance of the visit, help youngsters create a family album to take with them to share with their relative. Bring an easy fun activity that your children can do together with their loved one. Have the kids make a memory jar where they list things they remember about their parent or grandparent on slips of paper, decorate the slips, fold them, and add them to the jar. Then during visits, children can draw a few slips and discuss them. Singing familiar songs might also be an enjoyable activity. I’m sure your kids will come up with ideas of their own to maintain interaction.

An excellent resource that will help you have a conversation with your children can be found at: http://preview.alz.org/national/documents/brochure_childrenteens.pdf. I’ve put together a list of books and videos specifically for children and teens on my website in the “Resource” section. Check out your local library to see which of these books you can borrow. Watch the videos together and ask if they have any questions or want to discuss what they just saw.

Your openness and willingness to discuss your youngster’s feelings and fears, provide reassurance, and answer their questions will keep your family strong in dealing with this disease.

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Five-year-old Sophie Flynn is from Ireland. She visited her great-grandmother for the first time recently, and was not intimidated by her great grandma’s dementia. Sophie warmed up to her immediately and sang her this sweet song: https://youtu.be/oR0gX3Pk04c .

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To access additional resources for communicating with teens and children about the disease, check out these pages on my website: http://caregiverfamilies.com/books/, and http://caregiverfamilies.com/websites-and-blogs/.

 

September Is World Alzheimer’s Month

Dear Family Caregiver,

I salute you! You are one in a million! Wait – NO – make that one in about 15.7 million in the  United States who provide support and care to those with Alzheimer’s and other dementias.

 World Alzheimer's Awareness Month


World Alzheimer’s Awareness Month

September is set aside as “World Alzheimer’s Month,” and September 21 as “World Alzheimer’s Day.” Alzheimer’s organizations around the world concentrate their public relations efforts this month to raise awareness and encourage a better understanding of Alzheimer’s and dementia. About forty to fifty percent of people living with the disease are never diagnosed.

I saw a Facebook “Minion Quote” (Despicable Me Minions.org) that said, “Sometime I just want someone to hug me and say, ‘I know it’s hard. You’re going to be okay. Here’s a coffee and five million dollars.’” Sorry, I don’t have coffee and money to give you, but I would like to give you a big hug through the internet! Thank you for your dedication, love, and compassionate care!

Hug Tokens

Hug Tokens

You and your loved one have first-hand experience what it’s like to live with the disease. The Alzheimer’s Association estimated that 17.9 billion hours of unpaid care were given last year by family and friends who support those diagnosed with the disease. About seventy-five percent of you provide this care at home. Oftentimes your efforts go unappreciated and unseen by family members and friends.

“We can ask ourselves daily what we have done to make the world a better place, to make someone smile, to help someone to feel more secure, etc. It’s the simple things which have the greatest effect. We must never underestimate the strength of a smile or act of kindness,” noted Dr. Leo Buscaglia, famous author, professor, and motivational speaker who passed away in 1998.

Thank you for your daily efforts to help make your corner of the world a better place for you and your loved ones! Thank you for your selfless and courageous love!

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To hear Dr. Leo Buscaglia talk about courageous love, a five minute segment of his “Speaking of Love” series, go to: https://youtu.be/0Tpsg0scod4.

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For more facts and figures, please check out the Alzheimer’s Association’s “Alzheimer’s Disease Caregivers Fact Sheet, March, 2015:  http://act.alz.org/site/DocServer/caregivers_fact_sheet.pdf?docID=3022

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For more information on World Alzheimer’s Month and World Alzheimer’s Day, please go to:  http://www.alz.co.uk/world-alzheimers-month

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For a 9.5 minute meditation on “Loving Kindness,” please go to: http://marc.ucla.edu/mpeg/05_Loving_Kindness_Meditation.mp3

Change, Harmony, Balance

The mandala is a spiritual and ritual symbol of the universe used in Hinduism and Buddhism. Its design represents “balance” in all of life. Some religious traditions use mandalas as aids to meditation.

Summer Solstice Mandala

Summer Solstice Mandala

I became fascinated with this symbol when I had an opportunity a few years ago to witness a group of Buddhist monks painstakingly design a mandala out of colored sands. This ritual took place at an event held at Wat Buddharangsi of Miami, a Buddhist Temple.

Monk creating sand mandala

Monk creating sand mandala

 

 

Carl Jung, the Swiss psychoanalyst who lived at the turn of the last century, used mandalas in his treatment of patients. To him the mandala signified “…the Self, the wholeness of the personality, which if all goes well is harmonious.” (Memories, Dreams, Reflections, page 196.) His patients would color in mandalas as a way of helping them to focus and allow their subconscious to let go and regain balance.

When a loved one is diagnosed with Alzheimer’s, their life and yours as a caregiver changes. At times, things may seem out of balance and even overwhelming for both of you. As the disease progresses, change and more change is inevitable.  Their confusion and memory loss will likely get worse over time, and your loved one will need more in the way of care.

Developing a workable plan of action for you and your loved one can help restore a sense of balance. Seeking support and asking for help is a sign of strength, not of weakness. It means you, as a caregiver, are a wise person who knows your limits. You have the courage to ask for help before life becomes unmanageable and totally out of balance.

In a previous blog, I wrote about joining a support group early on in your caregiving role. In this blog, I briefly discuss the benefits of seeking help from a professional care manager. Shortly after my mother was diagnosed with dementia, I arranged for her and Dad to meet with a geriatric care manager. I sat in on the sessions with them. The care manager reviewed their financial resources and discussed housing options available. We found her services extremely helpful. I think we met only twice, but it was enough to help us plan for Mom’s future needs.

Professional care managers assist in a variety of ways. Their guidance can lead families to take action and make decisions that better ensure quality care and an optimal life for you and your loved one. If you are a long-distance caregiver, their services can be vital to provide and help maintain daily support for the person with dementia. An assessment of needs, available resources, and a workable plan to address caregiving challenges, can help family members assume control of the situation.

Here is a description of basic care management services from the website of Aging Life Care Professionals:

  • Housing – helping families evaluate and select appropriate level of housing or residential options.
  • Home care services – determining types of services that are right for a client and assisting the family to engage and monitor those services.
  • Medical management – attending doctor appointments, facilitating communication between doctor, client, and family, and if appropriate, monitoring client’s adherence to medical orders and instructions.
  • Communication – keeping family members and professionals; informed as to the well-being and changing needs of the client.
  • Social activities – providing opportunity for client to engage in social, recreational, or cultural activities that enrich the quality of life.
  • Legal – referring to or consulting with an elder law attorney; providing expert opinion for courts in determining level of care.
  • Financial – may include reviewing or overseeing bill paying or consulting with accountant or client’s Power of Attorney.
  • Entitlements – providing information on Federal and state entitlements; connecting families to local programs.
  • Safety and security – monitoring the client at home; recommending technologies to add to security or safety; observing changes and potential risks of exploitation or abuse.
  • Local, cost-effective resources are identified and engaged as needed.

Once a comprehensive assessment is performed, a care manager will tailor a care plan based upon each individual’s and family’s circumstances. This plan may be modified, in consultation with the client and family, as the circumstances change.

According to a recent AARP survey, an initial consultation typically costs $175. At the time of this writing, Medicare does not pay for geriatric care management services. However, the care manager is knowledgeable about costs, quality, and availability of local resources. For some families, meeting one or two times is enough to formulate a plan of supportive services.

Two other options are to contact your local Alzheimer’s Association and ask to speak to a social worker. Your Area Agency on Aging may also provide a referral worker you can speak with who has knowledge of local resources. In Florida where I live, our State Area Agencies on Aging administer the “Community Care for the Elderly Program” which may provide financial assistance for care management and home and personal care services.

Having a care plan of action can help you focus your energies on priorities, and free you from needless worry. I wish you peace, patience, and joy in your caregiving today and every day!

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If you would like to release some stress and tension while being creative, please request two mandalas to color in by hand. Just send me a quick e-mail (Vicki@caregiverfamilies.com) with the words, “Free Mandalas” in the title and the address where to send these. I can either send them by e-mail or mail, whichever you prefer.

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For more information and to find a certified professional, call the National Association of Professional Geriatric Care Managers at 1-520-881-8008, or visit its website at: www.caremanager.org.

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The Alzheimer’s Association has a handy three-page document, “Geriatric Care Management – Questions and Answers.” To read it, go to http://www.alz.org/stl/documents/GCM_Tips.pdf.

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Here is an easy-to-use guide from the National Institute on Aging regarding getting help with caregiving: https://www.nia.nih.gov/alzheimers/publication/when-you-need-help/getting-help-caregiving

Sometimes You’ve Just Gotta Dance!

In life, on good days or bad, you just have to either dance away your troubles or boogie in your joys. I say, “Dance, dance, dance!” If you can’t dance, then, “Sing, sing, sing!”

Colors of Happiness

Colors of Happiness

 

Music has played a prominent part in the life of my family. My parents were musicians and singers. I had the privilege during my younger years to learn piano, organ, French horn, trumpet, violin, and guitar. I currently sing in a women’s a cappella chorus, South Florida Jubilee, for fun and relaxation! I recently discovered that singing burns 130 calories an hour.

 

Music helps create and evoke memories that last a lifetime. During one of my visits with Mom, we were sitting in her room at the assisted living facility where she lived after Dad’s death. She was in the middle stages of Alzheimer’s. We were listening to a classical music CD of waltzes. Mom was a classical music lover ever since I can remember. Suddenly, she grabbed my hands, stood up, and started dancing with me around her room, in time to the strains of the waltz. Mom had come alive! It is a precious memory that I will never forget! In fact, I wrote a poem about it in October, 2003, that I would like to share here. It is one of the poems to be printed in my upcoming memoir.

The Spontaneous Dance

 The recorded music began playing.

She held out her arms spontaneously

To take the lead in a magical dance

To Mozart’s “Eine Kleine Nachtmusik.”

 

We tripped the light fantastic,

Laughing, like giddy girls at play,

Spinning, twirling around her room,

Without a care in the world!

 

According to researchers of the Institute for Music and Neurologic Function, “Familiar and likable music has in many instances reduced depression, lessened agitation, increased sociability, movement, and cognitive ability, and decreased problem behaviors.”

My advice, dear friends, is to put aside your worries each day for a few minutes. Find music that “moves” you. Then snap your fingers, tap your toes, and dance away your cares! Even better, sing along as you dance! I guarantee that those few minutes will reduce physical tension and anxiety, and refresh your bank of wellness inside your soul.

Shake It Off, by Karin Beate Nosterud

Shake It Off, by Karin Beate Nosterud

May you find peace, patience, and joy in your caregiving today and everyday!

*  *  *

To hear Amadeus Mozart’s, “Allegro,” from “Eine Kleine Nachtmusik,” check out this YouTube video of the Les Dissonances string orchestra: https://youtu.be/Qb_jQBgzU-I

 

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To put another smile on your face, listen and watch Paul Simon sing on the “Sesame Street Show” with youngsters dancing: https://youtu.be/G1dlWmrRstc

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Lose your blues to this “Dancing at the Movies” music video: https://youtu.be/uHisd9P2M-Y

Shadows, Sundowning, and Full Moons

Shadows Deutsche Fotothek Fotothek_df_roe-neg_0006419_012_Schattenspiel_auf_einer_Treppe

Shadows Deutsche Fotothek

My family listened to a lot of radio when I was growing up pre-television. I’m dating myself when I write that, at about the age of eight, one of my favorite radio dramas was The Shadow. It both frightened and fascinated me!

When the show’s eerie musical theme started, I would hide behind our living room sofa. The voice of actor Frank Readick Jr. mesmerized me. He announced with a spooky laugh, “Who knows what evil lurks in the hearts of men?” I guess at that age I thought the sofa would protect me from the “Shadow” popping out of the radio to grab me!  Each episode would end with, “The weed of crime bears bitter fruit. Crime does not pay…The Shadow knows!”

A child’s imagination is one thing, but shadows, darkness, and perhaps even full moons can pose a problem and cause distress to a loved one with Alzheimer’s or dementia. Seeing shadows in the home, especially when there is poor lighting, and when it is later in the day, can bring on sundowning. Sundowning is a condition that occurs usually in the late afternoon or early evening. The Alzheimer’s Association defines it as “a syndrome characterized by cycles of increased confusion, anxiety, agitation, pacing and disorientation that affects people in moderate to late stages of dementia.” Simply put, as the sun goes down, your loved one may become more confused and irritable. The causes of sundowning are not yet fully understood. There are several theories about what causes it.

Some professionals attribute sundowning to brain fatigue.  Your loved one’s brain has been working extra hard throughout the day to navigate their environment, trying to figure out what to do next. At some point, it may be that the brain has a “melt down.” This can lead to emotional outbursts.

Another theory concerns the presence of high levels of an enzyme in the brain. Researchers at Ohio State are running tests with mice. Their hypothesis is that there is a biological basis to sundowning. They are looking at a certain enzyme, acetylcholinesterase. This is present in high levels when aged mice display distress.

A third theory is that reduced light from the sun in the late afternoon and increased shadows may cause your loved one to misinterpret what they see. They become afraid or confused. Remember, their brains are working and processing information differently from yours.

A fourth theory says sundowning is related to changes or disruptions of the body’s internal clock and the sleep-wake cycle.

Because a person becomes agitated in the late afternoon or early evening doesn’t necessarily mean that they are sundowning. With sundowning, there is usually a pattern of behavior and repetition at the same time of day.

Some persons with dementia display agitation and start pacing. It becomes difficult for them to differentiate reality from past memories. This condition happened to my Mom when she was in the mid-stages of the disease.

I’ll never forget one of my visits to see her at the assisted living facility where she lived. My usual visits with her were in the morning, but that day I came to visit around 4 PM. Mom was pacing anxiously up and down the corridor of the assisted living unit. She didn’t even stop to say hello to me, as I tried to keep up with her. I asked her if we could sit down to visit. She swatted at me, and told me she needed to get home quickly before “…the kids come home from school, or mother will be mad at me.” It took me awhile to realize that she was reliving childhood memories. She was the second oldest daughter in a family of six children. One of her chores was to care for her four younger brothers after school, while her folks worked at their grocery store until supper time. This was the time of day when she would have left high school to attend to her brothers at home.

I told her that she didn’t need to worry, that her mother was still at the grocery store, and the kids had after school activities and so were running late. She called me a liar. I told her we would call her mother to make sure she knew the kids would be safe. Mom gave me a quizzical look at first and then calmed down. I told her we would go to her room to make the call. Once we got there, I tried to distract her by talking about something else. Fortunately, she seemed to have forgotten why we went to her room. I didn’t have to “fake” a phone call. We visited for awhile before it was time for her to go to supper. I walked Mom to her dining area and said goodbye. Since she had calmed down, I felt comfortable ending my visit and leaving her to go home.

Bluemoon Craig Deakin UK_(1)

Bluemoon by Craig Deakin UK

Do you find more intense behaviors in your loved one at the onset of a full moon?  I recently spoke to a dear friend who cared for her mother-in-law who had Alzheimer’s. She told me that whenever there was a full moon, the staff at the nursing home would call in extra help. They knew that during the time leading up to a full moon, behavior in many of their residents with dementia would escalate.

I tried to research this full moon phenomenon. I never really noticed it in my mother’s behavior. I did find mention on Google of a researcher, Alan M. Beck of Purdue University. He conducted a longitudinal study of the influence of the moon on the intensity of behaviors in persons with AD. These behaviors were: wandering, anxiety, physical aggression, and verbal confrontation. His study concluded that persons with Alzheimer’s “…did exhibit significantly more behaviors during periods of full moon,” and the behaviors were of greater duration when the moon was full. I could not discover any more about this study. However, the next full moons in 2015 are: July 31 (a blue moon,) August 29, September 27, October 27, November 25, and December 11.

If your loved one displays dramatic changes in behavior at certain time of the day or month, there are a few things you can do to help cope with the situation and to calm your loved one. These involve experimenting in behavioral ways, as well as finding what in the environment might be causing the agitation.

First, keep a journal marking the time and conditions when this behavior happens. Try to find a pattern to what might be the cause of their behavior.

Second, think about your home. How is the lighting during those times when the sundowning begins? Are the rooms well lit? Putting lights on dimmers may help save electricity, while giving off enough light as the day gets darker. One suggestion I’ve read is to provide exposure to light (artificial or natural) in the early morning hours, from 6 AM to 9 AM. This might help set their “internal clock.”

Third, is this a time of day when activity in your house gets a little more hectic than usual? Are family members coming home from work, or kids returning from school? Is traffic noisier? Try to create a calm environment with fewer distractions. Playing soothing music or nature sounds like waves rolling onto the seashore or birds singing can have a calming effect.

Fourth, try to engage your loved one in a relaxing activity.  It might help to look at photographs, work on something that they enjoy doing, or just take them for a short walk in your garden or yard, if they need to pace back and forth. Put on a DVD of beautiful photos and pictures for them to watch. (I feature a product offered by the AlzStore. It is a DVD called “Ambient Art.” It transforms your TV into an Impressionist art gallery. I have provided a link at the end of this article. The AlzStore also offers two DVD’s of virtual aquariums. One even has the choice of soothing bubbling sound effects or relaxing music in the background.)

Fifth, make sure your loved one is not thirsty or dehydrated, or needs to use the bathroom. They may not be able to ask you for a drink of water, or tell you they have to go to the toilet. Avoid caffeinated drinks after lunch.

Lastly, try to keep a regular daily schedule, as much as possible. If your loved one rests most of the day, they are likely to be restless at night. Plan regular daily exercise and meaningful activities. Try to keep outings and doctor appointments for the morning hours when they are more rested and better able to cope with the changes in surroundings.

If you have discovered something that works for your loved one in regards to sundowning, let me know. Just e-mail me a brief message (Vicki@caregiverfamilies.com). I’d be happy to share suggestions in a future blog.

I wish you peace, patience, and courage in your caregiving journey!

 

RESOURCES on SUNDOWNING

Here are two brief “YouTube” videos about sundowning: One is produced by the UCLA Alzheimer’s and Dementia Care Program: (https://youtu.be/kskiEKghjAE).

The other is a three-minute video produced by the Alzheimer’s Association: (https://youtu.be/Xpq952yjmqk).

RESOURCES on THE SHADOW Radio Drama Series

Just for fun and relaxation, listen to Camille Saint-Saens’ Opus 31, “Omphale’s Spinning Wheel.” When you get about three minutes into the piece, this part was used for the theme of The Shadow radio drama:  (https://youtu.be/96aapx3DFdM)

If you have time, listen to one of The Shadow’s radio dramas, “The Deathhouse Rescue,” (https://youtu.be/3FX-KSzpSF0)

RESOURCE for the Ambient Art Impressionism DVD

Product Code 2098: (http://www.alzstore.com/ambient-art-dvd-p/2098.htm)

Order online or call AlzStore Toll free number: 1-800-752-3238