Spousal caregiving

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/.

Worrying vs. Caring

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

Worrydollcraft as featured on Etsy

Worrydollcraft as featured on Etsy

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

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

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

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

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

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

Image courtesy of Stuart Miles

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

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

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

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

“Finish each day and be done with it,

you have done what you could.

Some blunders and absurdities no doubt crept in.

Forget them as soon as you can.

Tomorrow is a new day,

you shall begin it well and serenely.”

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

*  *  *

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

 *  *  *

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

*  *  *

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.

 

A Reflection on the Language of Touch

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

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

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

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

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

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

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

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

Jan 21 baby hugged cropped-1345736_640

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

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

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

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

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

 Jan 21 grandma enbraces child-577494_640

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

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

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

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

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

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

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

 hands-holding-together

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

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

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.

 

Smell, the Most Powerful Memory Trigger

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

Relaxing in a lavender patch

Relaxing in a lavender patch

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

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

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

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

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

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

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

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

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

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

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

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

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

 

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

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

Eyes: Our Windows to the World

Eyes: Our Windows to the World

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

Alzheimer’s and the Senses Part Two: Sight

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

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

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

Sight loss evolves from four conditions:

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

    Four Types of Vision

    Four Types of Vision

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

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

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

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

Area 1: Depth Perception

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

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

Area 2: Motion Blindness

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

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

Area 3: Color Perception

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

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

Area 4: Contrast Sensitivity

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

Pelli-Robson Contrast Sensitivity Chart

Pelli-Robson Contrast Sensitivity Chart

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

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

Area 5: Visual Agnosia and Misidentifications

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

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

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

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

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

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

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

*  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 

In Tune with the Heartbeat of the Universe

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

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

In Tune with the Universe

In Tune with the Universe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 *  *  *

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

*  *  *

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

*  *  *

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

 *  *  *

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

 

Steppingstones of a Caregiver’s Journey

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

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

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

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

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

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

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

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

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

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

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

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

grassy slope trees-167761_640

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

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

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

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

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

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

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

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

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

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

 *  *  *

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

 *  *  *

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

 *  *  *

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

 *  *  *

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