Caregiving

Alzheimer’s and the Senses Part Two: Sight

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

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

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

Sight loss evolves from four conditions:

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

    Four Types of Vision

    Four Types of Vision

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

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

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

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

Area 1: Depth Perception

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

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

Area 2: Motion Blindness

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

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

Area 3: Color Perception

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

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

Area 4: Contrast Sensitivity

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

Pelli-Robson Contrast Sensitivity Chart

Pelli-Robson Contrast Sensitivity Chart

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

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

Area 5: Visual Agnosia and Misidentifications

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

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

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

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

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

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

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

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

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

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

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

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

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

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In Tune with the Heartbeat of the Universe

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

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

In Tune with the Universe

In Tune with the Universe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Alzheimer’s and the Senses/ Part One: Hearing

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

The Human Ear

The Human Ear

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

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

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

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

Diagram of the Ear

Diagram of the Ear

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

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

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

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

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

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

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

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

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

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

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

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

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

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Steppingstones of a Caregiver’s Journey

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

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

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

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

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

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

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

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

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

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

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

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

grassy slope trees-167761_640

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Depression and Dementia

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

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

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

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

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

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

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

July 9 cut Jeremy Thomas StocksnapINA1ZTZAX7

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

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

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

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

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

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

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

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

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

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A World without Alzheimer’s Disease

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

We are the world!

We are the world!

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

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

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

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

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

Age-related Forgetfulness                                            Memory Loss

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

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

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

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

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

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

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

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

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

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

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

June 25 world people banner-1375492_640

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

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

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

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

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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 2

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

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

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

Heading Home

Heading Home

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

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

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

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

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

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

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

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

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

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

The Old Homestead

The Old Homestead

 

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

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

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

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

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

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

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

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

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

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

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

Not So Golden

In the blink of an eye,

she became old.

Not the retire-to-golf and free-time

and travel to exotic places kind of old.

You see it in the “Golden Years” ads filled

with smiling Seniors

going off to some “fun in the sun.”

Her kind of old was like a thief

breaking in with silent feet,

rifling through the drawers of her mind,

replacing the contents with forgetfulness,

stealing her health and her home,

leaving behind the need for relocation.

 

Like a burglar, this kind of old crept in

through the window.

It robbed her of independence and left her unsettled.

It swindled her of energy and happiness and

reshaped her future—

replacing it with desperate uncertainty and longing

to return home.

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“Home Is Where the Heart Is” – Part 1

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

Home, Sweet Home

Home, Sweet Home

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

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

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

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

The Journey Home

The Journey Home

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

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

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

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

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

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

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

Orange juice for the ear!

Orange juice for the ear!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MRS. WINSTANLEY AND THE PIANO

By 12:35 p.m.

she had finished her lunch.

By 12:45 p.m.

she had wheeled herself into the sunroom.

She was on nursing home time, and as it

happened every day, her eyes went to

the piano in the corner of the room.

Since her stroke, she couldn’t speak.

Neither could the piano.

Yet, it spoke to her.

 

It was just an old upright with scratches and dents,

(no Baby Grand) –

elegant in its way, like an

aristocrat whose fortunes had declined.

It resided in a corner, out of the way,

tuned on an “as needed” basis.

 

By 1:00 p.m.

she began her silent conversation,

telling the piano how alike they were –

how they both operated on wheels;

how with her fingers and the piano’s keys,

they could play wonderful concerts together;

and how they may both be old, but their strings

were filled with memories of fun and laughter.

 

By 1:15 p.m.

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

couldn’t remember if she had ever really played.

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

even though her strings needed tuning,

and her wheels needed oiling,

and her memory needed practice.

 

By 1:30 p.m.

The piano remained silent

and sleep overcame her.

The conversation was finished.