Uncategorized

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!

*  *  *

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

 *  *  *

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.

 *  *  *

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.

 *  *  *

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!

 *  *  *

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.

 *  *  *

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.

 *  *  *

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!
*  *  *

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!

 *  *  *

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

 *  *  *

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.

 *  *  *

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!

~  ~  ~

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

~  ~  ~

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.

~  ~  ~

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.

~  ~  ~

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.

~  ~  ~

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.

~  ~  ~

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!

~  ~  ~

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.

~  ~  ~

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.  

AARP Ad

AARP Ad

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!

~  ~  ~

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.

~  ~  ~

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.

~  ~  ~

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.

~  ~  ~

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

~  ~  ~

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/.

~  ~  ~

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!

*  *  *

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.

 *  *  *

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

 *  *  *

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

 *  *  *

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.

 *  *  *

 

 

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!

 *  *  *

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.

 *  *  *

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!

 *  *  *

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/.

 *  *  *

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.

 *  *  *

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.

 *  *  *

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

 *  *  *

 

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!    

*  *  *

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.

 *  *  *

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

 *  *  *

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.

 *  *  *

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 my subscribers.