Tips for Relieving Travel Anxiety

Do you recall the 1950’s Chevrolet commercial sung by actor and singer Dinah Shore? I‘m dating myself, but I do. The ad began: “See the USA in your Chevrolet. America is asking you to call. Drive your Chevrolet through the USA. America’s the greatest land of all.” Yes, the ad romanticizes auto travel. Aug 19 car on mapBut what do you do as a caregiver if your loved one living with dementia is afraid to travel by car or becomes anxious at the thought of leaving home?

Caregivers often have to face a variety of such challenges. Travel, especially to new places can be exciting, but the novelty of unfamiliar places, interaction with strangers, and the disruption of daily patterns and routines may lead to confusion on the part of persons living with dementia. Confusion and disorientation cause distress that might result in potentially disruptive behaviors or even trigger wandering.

Please don’t misunderstand. Many people living with dementia find travel fun. This month I followed the recent excursion via Facebook of one of my favorite bloggers, Harry Urban. He and his family make plans annually to vacation in Colonial Williamsburg, VA. Harry looked forward to this trip and even made videos of it, posting clips on his Facebook page. You can see the sheer delight in his face as he strolls through this historical town! Harry was diagnosed with Alzheimer’s about thirteen years ago.

If you are planning to travel a long distance with your loved one, you may want to ask their doctor if they are at a stage where they can tolerate all the stresses of such a trip. The California Central Chapter of Alzheimer’s Association recommends, “As a rule of thumb, (persons in) stages six and seven are too advanced and vulnerable and should not travel. NO person with dementia should ever travel unaccompanied. There are too many decisions to make, directions to follow, unfamiliar surroundings to navigate.”

Hopefully the suggestions I offer here will be helpful and generic enough, whether you and your loved one will travel by car, taxi, bus, plane, ship, or train. Some of these tips are based on my own experiences traveling with my mother who had dementia.

Advance Preparation and Precautions

I can’t stress enough how important it is to plan all the possible details of any trip in advance. Anticipating the needs of your loved one, preparing them, and helping them stay calm and occupied while in transit, can go a long way in making for an enjoyable trip.

If you’ve noticed that your loved one gets anxious about the thought of even getting into a car, perhaps they were in an accident in the past or got lost while driving. Perhaps these memories resurface when they think about traveling. If it’s possible, at an opportune time, ask if they can help you understand what it is that they fear might happen? Is there something specific that brings them discomfort; e.g., the destination, the time of day, the length of the outing? If they can’t answer and don’t remember, don’t force the issue. Perhaps there is another family member who can recount an issue from the past.

Make sure your vehicle is in tip top shape if you are driving. Even a trip to the nearby doctor’s office could be ruined if your car runs out of gas, breaks down, or a tire goes flat. Keep an emergency kit in the trunk. Take comfort items along, like a neck pillow, favorite soft blanket, sweater, snacks, water, continence care items, extra set of clothes. For longer trips, don’t forget to take medications that they require. Keep in mind that persons with dementia are more sensitive to tiredness, discomfort, and hunger.

Aug 19 AirportIf you are flying, use a travel agent who can help you with details and notify the airlines about your situation. Minimize layovers and length of the trip. Reserve a wheelchair to help navigate going through TSA security screening and getting to the gate. Also note that beginning January 22, 2018, certain state ID cards will no longer be enough to board a domestic flight. You may need passports. The Alzheimer’s Association has a document devoted to travel safety, including travel by air. You can download it at the link below this article.

The Day of the Trip

Talk about the trip in an upbeat manner. If you use a “reminder” board, post the information and time on it so they don’t have to keep asking you where they’re going.  Aug 19 Note card

Give yourself enough time to prepare your loved one. Factor in time to use the bathroom, dress or change clothes, grab a snack, put on a sweater or coat. Feeling rushed may make you and them anxious and frustrated, especially if you think you’ll be running late for an appointment. The calmer you are, the better.

Immediate Preparation

Your loved one may be at the stage where they have forgotten how to get into the car. This can cause them anxiety. Try to let them do as much as they can for themselves while you guide them. (See below for the link to Teepa Snow’s video for helpful tips.)

Ensure that their seatbelt is securely fastened. Some organizations recommend that your loved one sit in the back passenger side seat for safety purposes while you drive and that you use the child safety door locks. Many also recommend that you bring along a travel companion. I think you need to be the best judge of this. You don’t, however, want to risk that they become frightened and try to get out by opening the car door while the vehicle is in motion. Pull over as soon as possible to a safe spot and try to calm them if they become agitated.

If your loved one becomes upset during the ride about where you’re going and why, simply accept what they say. Don’t argue. Appeasing them is in the best interest for safety sake. You might simply say that you are taking a different route because you want to avoid a traffic jam. Play soothing music on the radio or bring a favorite CD of theirs and encourage them to sing along.

Keep a Travel Journal

If you need to do a lot of travel with your loved one, keeping a travel journal to record details of both good and bad trips can be helpful. You will need, at times, to be creative and patient. Have a backup plan.

There may come a time when your loved one can no longer tolerate the stress of travel. Be sensitive to this. When this happens, sharing photos and videos of past trips may still bring them pleasure and joy. Happy trails!

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

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To hear Dinah Shore singing the famous 1950’s Chevrolet ad song, just click here: https://youtu.be/iK43-ERSwwM.

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Here is the link for the Alzheimer’s Association sheet on travel safety: https://www.alz.org/national/documents/topicsheet_travelsafety.pdf.

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Marie Villeza, of ElderImpact.com, shared a wonderful resource with me. This article is from an auto dealer, Lagrange Country Dodge. I used it as a basis for my article. Thank you, Marie! To read it, go here: http://www.lagrangecountrydodge.com/blog/2017/april/4/the-caregiver-s-guide-to-car-travel-with-your-loved-one-with-alzheimer-s.htm.

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This nine-minute video by dementia-care education specialist, Teepa Snow, offers caregivers tips for helping their loved ones get in and out of a car: https://youtu.be/te4SW_0Af8k.

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Lori La Bey, radio host and founder of the “Alzheimer’s Speaks” website, has coordinated a special team for a one-of-a-kind “Cruise of Hope, November 11 -18, 2017. This Eastern Caribbean cruise leaves from the port of Ft. Lauderdale. It is designed for persons diagnosed with early to mid-dementia and their care partners. Cabins are booking quickly. For information, go to: https://alzheimersspeaks.com/cruise-with-us.


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/.

Caregivers – Everyday Heroes

“Some days you are the pigeon…some days the statue.”  I laugh every time I see this meme which my sister Marcia helped design. It often fit the emotions I had as a caregiver. Many times I was feeling good about the interventions I made on behalf of Mom. Other times I felt like the statue heaped in pigeon poop. Regardless, all caregivers are heroes in my eyes!  May 6 Pigeon Quote (1)

The Oxford Dictionary defines “hero” as a person who is admired for their courage, outstanding achievements, or noble qualities. Let’s take a closer look at how caregiving for our loved ones is an admirable and courageous role.

Is caregiving a calling, a vocation, a choice, an honor, a duty to assume? No matter how you arrived at this point, it is important to stop from time-to-time and analyze your caregiving responsibility. You don’t usually get a chance to rehearse for this role.

Caregiving encompasses such a variety of situations and experiences—from caring for a loved one in your home or theirs, caring from a distance, or when they are in an institutional setting. No matter the setting, it includes attending to your loved one’s emotional well-being and physical health, sometimes at great personal sacrifice.

Multiple Roles and Skills

If I had to write a “job” description for an unpaid caregiver, I would find it very difficult. Caregiving involves multiple roles and skills. I would have to include such roles as: legal and health advocate, communicator, teacher, medication monitor, driver, companion, financial manager, nurse, organizer, food preparer, crisis planner, to name a few. These roles likely change and evolve as the disease progresses.

Caregiving will change you. You can learn and experience compassion by being exposed to pain and suffering in your loved one. Caregiving can also make you resentful, angry, and downright exhausted and overwhelmed at times. Feeling powerless is an easy trap to fall into when you feel “stuck” in the caregiver role. How you feel about what you are doing can either cause stress for you or become one of the most gratifying experiences in your life.

Author, teacher and spiritual leader Parker Palmer puts it this way, “The ancient human question, ‘Who am I?’ leads inevitably to the equally important question, ‘Whose am I?,’ for there is no self outside of relationship.” He goes on to write: “Before I can tell my life what I want to do with it, I must listen to my life telling me who I am.”

An Inventory

Listening to what your life is telling you at the point in your life when you become a caregiver involves understanding what are the truths and values at the heart of your identity. Your motivations can help sustain you when things become difficult in your caregiver role. Take an inventory of what you’re really doing and be realistic.

  • Does your role as a caregiver give you a sense of fulfillment, and provide meaning and purpose to your life?
  • Why do you do what you do?
  • What unique talents, strengths, and qualities do you bring to the caregiving role?
  • What has been the underlying strength that has sustained you?
  • What activities are life-giving to you?
  • What do you want to let go of, and what do you want to give yourself to?
  • If you don’t have the caregiving attributes that you would like, can you find a way to develop them?

May 6 medal-390549_640The very essence of being human is feeling like we have a purpose in life. The American existential psychologist Rollo May wrote a book, Man’s Search for Himself.  He writes, “A man or woman becomes fully human only by his or her choices. People attain worth and dignity by the multitude of decisions they make from day to day. These decisions require courage. Courage is the virtue of maturity.”

Our culture, family members, and friends may not value what you are doing. They may begin to take you for granted. It is difficult at times to imagine that what you are doing as a caregiver is making a difference. But, believe me, it is!

If you’re having a bad day, think of all the good you have done and are doing. Pick yourself up. Dust yourself off. Clean up the poop, and do the best you can. You don’t have to give up your life to be a caregiver. Believe in yourself. Take care of yourself. Find a supportive network. Acknowledge and embrace your liabilities and limitations, but also your strengths and talents.

Let the words of essayist and poet Ralph Waldo Emerson spur you on at the end of each day:

“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.”


Thank you for the gift of your courageous caregiving spirit! I wish you peace, patience, and joy in your caregiving today and every day!

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Lyda Arevalo-Flechos, PhD, MSN, RN is a researcher studying Latino-Hispanic caregivers’ perception of the experience of caring for a relative with Alzheimer’s Watch this 10-minute TED talk, “All Alzheimer’s Caregivers Are Not Created Equal:” https://www.youtube.com/watch?v=2QYdXGZNp5A.

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Check out the Alzheimer’s Association’s online Community Resource Finder to find dementia care resources in your area: https://alz.org/CRF.

The Risks of Loneliness and Isolation for Male Caregivers

The ad reads: “You don’t have to be so strong.” “But if I’m not, who will?” Being a caregiver takes a special kind of commitment. We know your strength is super, but you’re still human. Find support for your strength.  



It was this full-page ad, appearing in the April AARP Bulletin, that made me pause to reflect on male caregiving. I was struck by the powerful message it is meant to give male caregivers. As I discovered in my research, there are stereotypes, misconceptions, and risks attached to the role.

Family caregiving remains the backbone of the long-term care system here in our country. With changing social norms and demographics, men are increasingly assuming caregiver roles, once the purview of women. According to the National Alliance of Caregivers, about forty-four percent of caregivers in the USA are male. Just a decade ago, less than twenty-five percent of caregivers were men.

I’m finding more and more men in my family and personal social network taking on caregiving responsibilities. My father was the primary caregiver of my mother for years before he passed away. I have a male cousin who became the primary caregiver this year for his father, my uncle, who has dementia. A friend from my former workplace is caring for his mother who has Alzheimer’s. Another friend is looking after his recently widowed mother after his father who had Alzheimer’s passed away. Fifty-four percent of persons visiting my family caregivers’ website are males.

Differing Approaches to the Caregiving Role

My research and an interview with a local neurologist reveal that men employ different strategies to help cope with caregiving tasks. Women tend to be more concerned about the socialization and emotional well-being of their loved ones. Men’s primary concerns focus on having the right doctors and managing medications. Many male caregivers are highly invested in their role. They see it as an extension of their role as provider in the family. Male spouses, especially, view caregiving as a chance to give back to their wives who took care of them for many years.

Some men, however, tend to approach this role as “problem solvers” or “fixers.” Unfortunately, this mentality and approach won’t likely be successful because Alzheimer’s can’t be “fixed,” no matter how hard we try. Instead of attempting to solve “memory problems,” male caregivers can shift to solving how to make sure life is the best it can be by developing an action plan and having a contingency plan in place. This task involves having a palliative care discussion with the physician about specific life and comfort goals for your loved one and how to achieve these goals.

Men may need more education and training of how to be caregivers. They may have to learn new skills such as cooking, cleaning, laundering. If they are caring for a female loved one, they may have to take on unfamiliar personal tasks of bathing, dressing, applying make-up, personal hygiene, fixing hair. These tasks may be uncomfortable to do at times.

The neurologist I spoke to recently gave anecdotal evidence that men also tend to take longer to accept the fact that their loved one has Alzheimer’s. The neurologist noted that, even in the last stages of her disease, the husband was asking about clinical trials for his wife.

The Danger of Loneliness

Boston Globe reporter Billy Baker, wrote an article on March 9, 2017, about the biggest threat facing middle-age men. The threat he wrote about is loneliness. In his research, Baker discovered that disconnecting from friends is bad for long-term health. He was flooded with e-mails and requests to appear on TV and radio shows. It was a courageous article about male loneliness.

A 2010 AARP study showed that one in three Americans, age 45+, are chronically lonely. Loneliness is linked to an increased risk of cardiovascular disease and stroke, as well as the progression of Alzheimer’s. A 2010 University of South Florida study in the journal Stroke found that male caregiving spouses were at a higher risk of stroke, more so than female caregivers, and African-American men most of all.

The Danger of Isolation

April 15 man on hill with milky-way-916523_640Dr. Vivek Murthy, 19th surgeon general of the US, noted that the most prevalent health issue in our country is not cancer, heart disease, or obesity, but isolation. Men tend to depend on their wives for their social support network. When the wife is no longer able to entertain or communicate, this can leave the husband isolated without a supportive community.

Caring for a person with Alzheimer’s will be a challenge unlike anything you’ve ever faced, no matter if you are male or female. You will want to provide the best care possible. As your loved one’s behavior and health deteriorates, and before the symptoms worsen, you need to take into account two very important things: 1) You are not alone and don’t have to care in isolation; and 2) you must take care of yourself if you are to care for your loved one. Let’s take a closer look at each.

You Are Not Alone

In his article, Billy Baker writes that an important step in escaping the trap of male loneliness is to simply and openly admit that you, as a male, want and need real friends. It is important to your health to express your own needs and limitations. Don’t be afraid to ask family members, friends, neighbors, even church members for help. Family and friends can make your life easier to endure the pain of the losses that accompany this disease. Asking for and getting help is a sign of strength! It is a strategy to improve the quality of care you can give.

Most family members want to participate in caring for a loved one, but don’t know what is needed. If possible, assign specific responsibilities to each. Even long-distance family members can reach out by having regular phone contacts with you, sending needed supplies, taking time out to stay for a few days to give you respite and vacation time.

Resources for Support

If you are employed, check what services your employer offers, like flex time, paid or unpaid leave.

Check out the local support groups in your area. Your local Alzheimer’s Association is a good place to start, as this organization sponsors groups in a variety of locations. Memory disorder clinics, hospital neurology departments, senior centers, and churches also offer support programs. Organizations and social service agencies are beginning to offer male-only support groups. Having a place to safely “vent” frustrations and worries is a constructive way to de-stress.

Another source for networking is an on-line support group. Online social networks do meet a certain need for connecting. While these tend to be less personal, there is often good information shared by the participants.

The Alzheimer’s Association has a 24/7 hotline number: 1-800-272-3900. When you call, you get a “live” person at the other end who can answer your questions or provide options of what to do if there is a situation you can’t control.

Bob DeMarco, a former Wall Street executive and CEO of a software and development marketing company, started a website and free online newsletter, “Alzheimer’s Reading Room.” It has over thirty-two thousand+ reader/subscribers. Bob was caregiver for his mother, Dotty, for eight and a half years before her passing. He writes what he discovered during this time. His website features over 5,000 articles which makes it a veritable “treasure-trove” of practical tips and suggestions. Bob is a great role model for male caregivers. When he looks back at his experience caring for his mother, he notes that it was “the most important part of his life.”

You Must Take Care of Yourself

Caring for a loved one with dementia is very stressful, no matter if you are male or female. You aren’t superhuman. Besides looking after yourself, you have taken on the responsibility of caring for another human being who will eventually become unable to care for themselves.

The AARP ad recommends that male caregivers “find support for your strength.” According to Betty J. Kramer, Ph.D., and Edward H. Thompson, Jr., Ph.D., in their book, Men as Caregivers,  “Men experience more anxiety in handling the multiple demands of care, while also learning new skills. Men have greater physical health difficulties and depression, do not tend to be familiar with dealing with social service agencies, and are often uncomfortable asking for help.”

Focus on maintaining your own health. Caregiving requires balance: maintaining a healthy diet, getting adequate sleep, establishing a regular exercise routine, and developing a personal plan to cope with the changing demands you face. This plan should include taking time out for yourself to look after your own mental, emotional, spiritual, and social needs.

You are your loved one’s lifeline, their connection to the world. Ask yourself, where would they be without you. Establish lifelines for yourself. It’s never too late!

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The featured ad listed the website AARP.ORG/CAREGIVING, and the phone number to find further information: 1-877-333-5885. Please note this is not a hotline crisis number to receive advice or counseling, but can lead you to local support services.

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To read the full article by Billy Baker, click here: https://www.bostonglobe.com/magazine/2017/03/09/the-biggest-threat-facing-middle-age-men-isn-smoking-obesity-loneliness/k6saC9FnnHQCUbf5mJ8okL/story.html.

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The Men’s Health Network Advisory Board has a “Toolkit” for male caregivers of loved ones with Alzheimer’s. Download it here: http://www.menshealthnetwork.org/library/Alzheimers-caretaker.pdf.

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To check out Bob DeMarco’s website, click here: http://www.alzheimersreadingroom.com/.

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Here are four online communities for caregivers to connect, ask questions, and find support: 1) Alzheimer’s Association – https://www.alzconnected.org/; 2) https://www.caregiving.com/; 3) http://www.caringroad.org/; 4) Family Caregiver Alliance – https://www.caregiver.org/.

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Lotsa Helping Hands is a care calendar website, an easy way to organize meals, transportation, and other help. Check it out here: http://lotsahelpinghands.com/.


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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