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Alzheimer’s and the Senses Part Two: Sight

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

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

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

Sight loss evolves from four conditions:

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

    Four Types of Vision

    Four Types of Vision

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

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

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

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

Area 1: Depth Perception

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

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

Area 2: Motion Blindness

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

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

Area 3: Color Perception

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

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

Area 4: Contrast Sensitivity

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

Pelli-Robson Contrast Sensitivity Chart

Pelli-Robson Contrast Sensitivity Chart

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

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

Area 5: Visual Agnosia and Misidentifications

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

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

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

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

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

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

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

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

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

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

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

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

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

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In Tune with the Heartbeat of the Universe

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

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

In Tune with the Universe

In Tune with the Universe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Steppingstones of a Caregiver’s Journey

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

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

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

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

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

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

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

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

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

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

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

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

grassy slope trees-167761_640

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Caregiving and Friendship

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

Best Friends

Best Friends

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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“Home Is Where the Heart Is” – Part 1

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

Home, Sweet Home

Home, Sweet Home

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

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

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

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

The Journey Home

The Journey Home

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

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

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

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

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

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

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

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Daily Manifestations of Love

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

Cover to the book painted in 1943 by the author

Cover to the book painted in 1943 by the author

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

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

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

Your love nurtures the blooms of memories.

Your love nurtures the blooms of their memories.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Bridging the Communication Challenges of Aphasia

“’This is my sister,’ Mom said, introducing me to another resident at the facility. It doesn’t matter, I told myself. At least she still knows that I’m family.” (Journal note, 2003, p. 85, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion)

Bridging the Gap

Bridging the Gap

I didn’t realize it at the time, but substituting an intended word for another that has a related meaning, in this case, “sister” instead of “daughter,” is one symptom of aphasia. Aphasia is the loss of the ability to understand, listen, write, read, or speak. It is caused by damage to the part of the brain that contains language. This part is typically the left half of the brain. When a loved one has Alzheimer’s, aphasia begins gradually and varies, depending on how much the brain is affected by the disease.

Here is a list of some difficulties associated with aphasia:

  • Coming up with the exact words to say;
  • Switching sounds within a word; e.g., wishdasher for dishwasher;
  • Using made-up words or words that sound similar to the one they want; e.g., “I have a pint here,” instead of, “I have a pain here.”
  • Having difficulty putting words together to form sentences;
  • Having difficulty understanding what others are saying when there is background noise or when in a large group;
  • Putting together real words with made-up words fluently without making sense;
  • Misinterpreting jokes;
  • Having difficulty understanding number concepts; e.g., counting money, writing checks, adding, subtracting;
  • Having difficulty understanding long or complex sentences;
  • Reverting to a primary or native language, one learned from childhood.

Feelings of frustration at the inability to communicate may lead your loved one to experience embarrassment, anger, or even to become depressed. I wish I had understood this condition better while caring for my Mom. I suggested to my siblings, that when they were speaking long distance by phone, not to ask Mom complicated questions, but ones that she could answer “yes” or “no.” I also recommended that they talk about their lives and what their children were doing.

What can you do to communicate better if your loved one has aphasia?  Here are seven recommendations, based on a communication skills program for caregivers of patients with Alzheimer’s, developed by Danielle Ripich, Ph.D., in 1995. Dr. Ripich devised the acronym FOCUSED to explain and teach these helpful ideas.

F = Face-to-face: Get your loved one’s attention before you start speaking. Get to their level and maintain eye contact as much as possible. Watch their body language. Keep your voice at a normal level unless they ask you to speak up. Minimize or eliminate distracting background noise, if possible.

O = Orient to the topic: Repeat key words and use names of objects and people rather than pronouns. Use hand signals, pictures, and facial expressions.

C = Continuity of topic: Use signals when you are starting a new topic. Keep the conversation going by saying, “Tell me more.” “That’s great!” Praise all attempts to speak and downplay any errors. Avoid insisting that each word be produced perfectly.

U = Unstick any blocks: Acknowledge the frustration your loved ones feels at not being able to communicate what they want. Ask, “Do you mean…?” Encourage them to use drawings, writing, or gestures if you don’t understand what they are trying to say.

S = Structured questions: Use “yes” and “no” questions rather than open-ended questions. Or try asking questions that require a choice between two items or possibilities; e.g., “Would you like a drink of orange juice or cranberry juice?” Do not test them by asking questions such as “Who is our current President?”

E = Encourage interaction and independence: Keep up normal everyday conversations by taking turns talking. You may need to initiate the conversation and keep it going, but give your loved one time to talk. Resist the urge to finish their sentences or offer words unless they are having obvious difficulty. Don’t speak for your loved one. Avoid being overprotective.

D = Direct short sentences: Keep your communication simple, but don’t “talk down” to your loved one as if they were a child. Give one direction at a time. Reduce your rate of speech and use natural gestures to help them understand you.

Communication connects us as human beings. Your body language lets your loved one know that you have heard them, especially if you nod and smile. They may not remember the conversation you had an hour ago, a day, or week ago, but they do enjoy being in the moment with you. Your efforts to keep your loved ones engaged in communication will certainly help keep them engaged in life. Lastly, remember that one of the best forms of communication is touch, a tender hug to reassure them that they are loved, along with the words, “I love you!”

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

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Teepa Snow is a well-known dementia care and training specialist. In this short YouTube video, Teepa teaches a group of caregivers important phrases to learn when caring for someone with dementia. https://youtu.be/KKejCymVS2Q

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What’s the best advice you’ve ever received?  The “SoulPancake” website interviewed 39 people, ages 5 to 105. Here’s what each of them said in answer to this question: https://youtu.be/ZfsyrNKhNTE

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I’d love to know what your best advice is for other caregivers like yourself. Please e-mail me at: Vicki@CaregiverFamilies.com.

 

A Good Night’s Sleep Yields a Healthier Brain

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

Dreamcatchers

Dreamcatchers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bedtime

I came early one evening

to check on Mom after her illness.

She looked so sweet, so frail in bed

in her soft pink nightgown.

The roles seem reversed

as I tucked her in,

pulled up the covers,

and gently kissed her on her cheek.

She giggled.

“Good night, sleep tight!

Don’t let the bed bugs bite…

May the angels take you

to the realm of pleasant dreams,

my dear, sweet mother.”

She giggled.

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

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

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