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Final Gifts

It’s black on white – June 30, 2006 – the date on my mother’s death certificate. Even though she has been deceased for ten years now, Mom is very much with me in spirit today. I feel so blessed that I was able to be present when she passed away in the emergency room of a local hospital.november-angel-hand-and-rose-1548085_640

As I wrote in my book, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion, “The images of her lovely, sweet toothless smile, her gentle spirit, and her last peaceful breath continue to stay with me” (p. 105). I learned so much from her throughout my life, but that day the lesson for me was not to be afraid of death!

My friend, Father Tom Schroer, S.M., Ph.D., had a similar experience with the death of his mother. He vividly remembers his mother’s last day of life, Saturday, March 24, 2007. In her fragile bedridden condition under hospice care in a nursing facility, his mother called each of her four children by name to hold her hand. Fr. Tom recounts it this way: “Taking my turn, I and my mother gently caressed each other’s hand for several minutes, without a spoken word – just the exchange of warmth and tenderness. It was a moment in time that I can still recall and feel deeply and gratefully whenever I want to return to that bedside image.” It is his mother’s “final gift” of warmth and tenderness that he continues to “unwrap” whenever he wants to recall that blessed exchange.

Alzheimer’s is a progressive and terminal disease that cannot be reversed. In 2015, it was the sixth leading cause of death. Alzheimer’s is a disease of the brain, but not the spirit. In the final stage of the disease your loved one usually can no longer communicate verbally. They are totally dependent for all their care, and for you to advocate and attend to their personal needs. There are still many opportunities in the last hours to connect with your loved one and honor their spirit and life.

It is important that we, as caregivers, ensure that our loved ones have a “good” end-of-life when that time comes. Our tasks at this phase of their life’s journey must be one of attentiveness, and  creating a soothing, peaceful atmosphere, no matter if they are at home, in an assisted living/nursing home, or hospital setting. It can be an opportunity to experience deep intimacy. Hopefully, prior to this time you were able to put plans in place for their end-of-life wishes and desired medical care.

How can one tell when it is near the end of life with a person with Alzheimer’s or other form of dementia? There are symptoms of later-stage dementia that can signal when a person is near the final stage of their illness. It is best to consult a family physician or hospice worker to diagnose this, but several symptoms include:

  • No speech, or limited speech to single words or phrases that may not make sense;
  • May sleep more during the day;
  • Inability to walk or stand, problems with sitting up, and become bed-bound;
  • Bowel and bladder incontinence;
  • Decrease in appetite;
  • Need help eating and may develop swallowing difficulties;
  • Weight loss;
  • Need help with all facets of daily activities;
  • Reduced ability to understand what is being said to them;
  • May develop infections such as urinary tract infection or pneumonia.

Even though their spoken language may be severely affected, your loved one may still use non-verbal communication and behavior to show their needs and feelings. Doctors tell us that even when they can’t speak or smile, their emotional memories remain. “Even if your loved one’s cognitive and memory functions are depleted, their capacity to feel frightened or at peace, loved or lonely, and sad or secure remains,” notes Harvard Health Helpguide.org. While they may not be able to remember what you said, they can remember how you made them feel.

Here are a few things that you can do to make their end-of-life as comfortable as possible:

  1. Surround them with pictures and mementoes.
  2. Play their favorite music.
  3. Read aloud from their treasured books.
  4. Give them hugs to reassure that you are there for them.
  5. Hold their hands, gently stroke their arms, massage their arms or feet.
  6. Reminisce about life stories that bring comfort.
  7. Brush their hair.
  8. Check if they are in pain by looking for signs, such as facial expressions (grimacing), body language, crying, agitation.
  9. Continue talking to your loved one, even if you don’t think they are following what you are saying. They may still understand at some level and respond to the tone of your voice.
  10. Be willing to say goodbye and give them permission to “go.”
  11. Provide for a chaplain or spiritual leader of their faith community to visit and minister to them.

november-dusk-1004436_640Meaningful connections like these will help you meet your own emotional needs, as well as your loved one’s. Share the list above with family members or friends who may be reluctant to visit because they don’t quite know what to do or say that could provide comfort.

In their book, Final Gifts, hospice nurses Maggie Callanan and Patricia Kelley give examples how the dying leave behind gifts of wisdom, faith, and love for their loved ones to recall and carry close to their hearts. Being in the presence of a dying loved one can help us face our own mortality and teach us important lessons for living. Jade Alexander, author of Where Two Worlds Touch, describes her mother’s “final gift” this way: “Mom taught me how to love with my whole heart, how to organize my life around what really matters, how to be a good person, and how to accept and appreciate what is.”

“Unwrapping these ‘final gifts’ enables us to begin the healing and transforming of the incredible pain and sadness experienced with the loss of our loved one,” notes Fr. Tom.  The “final gifts” empower us to begin to establish a new connection with our loved one. St. John Chrysostom, an early Christian writer, wrote: “Those whom we love and lose are no longer where they were. They are now wherever we are.”

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

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Many thanks to Fr. Thomas Schroer, S.M., Ph.D., for sharing his experience and thoughts to use in this blog.

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Dementia trainer and advocate, Teepa Snow, talks to a group of caregivers about “Letting Go at the End of the Disease” in this short video: https://youtu.be/mNJxq4J5kYY.

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Dr. B. J. Miller is a palliative care physician at Zen Hospice Project who thinks deeply about how to create a dignified, graceful end of life for his patients. Take fifteen minutes to savor this moving talk, which asks big questions about how we think on death and honor life: https://youtu.be/apbSsILLh28.

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Create a personal website to share updates about a loved one’s health journey by going to: https://www.caringbridge.org/how-it-works.

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Take a few minutes’ break to listen to this beautiful rendition of the songs “Amazing Grace and My Chains Are Unbound,” by the Brigham Young University Singers: https://youtu.be/X6Mtpk4jeVA.  

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

End-of-Life Decisions and Care

Let’s begin at the end. What do most of us wish for at the end of our lives? Dignity? Comfort? Respect? Love? These are the things I want for myself and my loved ones. If caring for my mother taught me anything, it was to be as prepared as possible for when that time came for her. november-luminous-sky-1107952_640

My experience with death in our family has been very limited. Neither I nor my siblings were present when my father passed away in the hospital in the early morning hours. Fortunately, I was present when Mom drew her last breath while she lay in a coma in a local hospital’s emergency room ten years ago. It was a peaceful passing!

I asked a friend of mine, Fr. Thomas Schroer, S.M., Ph.D., to share his thoughts and experiences with death and the dying. Fr. Tom’s mother was attended by hospice staff while in a nursing facility. He also has accompanied several dying individuals in their last hours. Fr. Tom shared   that it is important to have well-trained and caring professionals assisting families at the crisis time of a loved one’s impending death. It’s an exhausting emotional roller-coaster ride. Family members are bound to experience a range of emotions, even conflicting ones, when caring for a dying individual. In such a situation, caregivers are in need of support, as well as the dying person. “I remember so well the relief I experienced when hospice care providers arrived to assist my family during my mother’s last days,” writes Fr. Tom. “The healthcare professionals were committed to making her as comfortable as possible. We could now focus completely on supporting one another and my mother with the confidence that she was in good hands.”

Fr. Tom highly recommends reading the book, Final Gifts, by Maggie Callanan and Patricia Kelly, two hospice nurses. “As nurses for the dying,” write these two authors, “we see ourselves as the counterparts of birthing coaches or midwives, who assist in bringing life from the womb into the world. At the other end of life, we help to ease the transition from life through death to whatever exists beyond.”  As family caregivers, we increase the probability of the dying process taking place in the most lovable and caring manner possible, if we are able to envision the dying process as a “second birthing process.”

Since you want the best care possible for your loved one, a hospice provider can assist you in making that vision a reality, even in the familiar surroundings of one’s own home, if that is preferred. Health insurance will usually cover the expenses. It is important to check out in advance the reputations of the hospice providers in your vicinity. Fr. Tom notes that not all organizations are equal in terms of their professional excellence and care.

Death is part of everyone’s life cycle. However, it is rarely a topic for serious family conversation until a crisis. My family was so fortunate. Our parents took the initiative early in their retirement years to meet with a family lawyer to draft all the necessary papers for wills and advanced directives. They prepaid for plots at their local cemetery. My oldest sister was designated executor of their wills, while I was made their health-care surrogate. Following Mom’s diagnosis of Alzheimer’s and vascular dementia, I arranged for our parents to meet with a geriatric care manager/financial planner. My parents discussed these plans with all the family members. Dad kept all their important papers in a portable metal file case, with copies at the lawyer’s office. This made it easy for us to know where to look if anything happened to either one of them.

nov-writing-1149962_640Legal advanced planning is the best plan to have. This ensures the decisions you and your loved one wish will be honored without the expense, delay, or loss of legal rights that can go along with the court appointment of a guardian. If someone dies without a will, their estate goes into probate. The probate court then uses the laws of the state to decide who inherits what. If you already have formal documents in place, take a few minutes to review them now, in case they need updating.

My recommendations to caregivers include:

  1. Start the conversation with your loved one while they are still able to tell you what kind of end-of-life treatment they would accept or not accept. “The Conversation Project” offers a free starter kit online to help family members begin these discussions. (See resources below.)
  2. How would you/they want to be remembered? What matters most to you/them?
  3. What level of medical interventions do you/they want? CPR? Feeding Tube? Artificial nutrition? Pain control?
  4. Make sure end-of-life wishes are honored, not only with a living will or advanced directive, but also a POLST (Physician Orders for Life Sustaining Treatment). The POLST is a medical form that is legally recognized in many It spells out end-of-life treatments that you want or don’t want. Medical personnel, especially EMT’s who come by ambulance in a crisis MUST follow the instructions on a POLST. (See resources below.)
  5. Designate a health care surrogate for yourself and your loved one, as well as a person you trust who can serve as your agent with durable power of attorney. Consult with an attorney before making or revoking a Durable Power of Attorney.
  6. Look into what your local hospice services may have to offer if and when it comes time. If you think your loved one is nearing that time, discuss this with your family doctor. You can request an evaluation by a hospice organization yourself, but the formal request for services will usually have to come with a physician’s request.
  7. What type of spiritual practices and memorial traditions would you/they want?

Endings are extremely important and deserve our loving attention to details. Maggie Callanan notes, “Our dying is the ultimate signature on our life’s story.” Talking with family and friends, consulting with health and legal professionals, bereavement experts, and spiritual advisors can help you work through the grief and loss issues you will inevitably face. Knowing you have done all you can as a caregiver to be prepared will help you get on with life and loving and making wonderful memories in the current phase of your loved one’s life journey.

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

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Many thanks to Fr. Thomas Schroer for taking time out of his busy schedule to share his thoughts about end-of-life care!

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The Conversation Project is a nonprofit organization devoted to helping families have conversations about end-of-life wishes. Their website is: http://theconversationproject.org.

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The National POLST Paradigm is a website that provides information about Physical Orders for Life-Sustaining Treatment: http://polst.org.

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Here is an interview with hospice worker Maggie Callanan, one of the authors of Final Giftshttps://youtu.be/kojj-OrS5Jk.

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Dr Jennifer Bute has released a series of short videos discussing dementia issues from her inside perspective as a person diagnosed with early onset dementia. Watch her seven-minute video about end-of-life issues: http://gloriousopportunity.org/dementia-issues.php.

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The Alzheimer’s Association has information to help with end-of-life planning at their website: http://www.alz.org/care/alzheimers-dementia-planning-ahead.asp#ixzz2lDd6TML2.

 

Alzheimer’s and the Senses Part Three: Smell

Freshly baked cherry pie. Roast turkey. Warm mulled cider. Do the thoughts of these smells have you salivating? Old Spice men’s aftershave lotion (my Dad’s favorite). Skunk spray. Lilacs in bloom. Ammonia. Sweaty clothes. What memories do these odorants arouse? october8-nose-smelling-flower-adult-19033_640

Our incredible sense of smell serves many functions. It is a “portal” to our emotions. It is one of the drivers of what we eat and drink. Our ability to smell alerts us to possible dangers, and is critical to our good health and quality of life.

How Our Sense of Smell Works

The average human being, it is said, can recognize up to 10,000 separate odors. Our human olfactory (smell) system has approximately four hundred different receptors. These enable us to detect and identify thousands of odorants. Odorants are microscopic molecules released by substances around us that become airborne. When we breathe or sniff the air, these odorants are drawn into our nose, entering a complex system of nasal passages.

Lining a portion of these nasal passages is the olfactory epithelium, a thin sheet of mucus-coated sensory tissue located high inside the nose. The odorant molecules we breathe in settle into the mucus, making contact with and stimulating the specialized olfactory sensory cells, called sensory neurons. Each of these forty million different olfactory neurons has one odor receptor. These nerve cells connect directly to the brain.

october-8-nose-chartEach nerve cell has thin threadlike projections called olfactory cilia which float in the mucus. Olfactory cilia contain the molecular wherewithal for detecting and starting the process to recognize the odors, and for generating an electrical signal to be sent to the brain.

Electrical signals are sent to the brain along a thin nerve fiber known as an axon. Axons from the millions of olfactory receptor cells bundle together to form the olfactory nerve. Olfactory receptor cells send electrical messages via the olfactory nerve to the olfactory bulb.

Odor information eventually travels to the limbic system, the part of the brain involved in emotion and memory. Other odor information goes to the olfactory cortex where thought processes take place. Cross-connections between the limbic system and the cortex may be essential in forming our emotionally-laden and lifelong olfactory memories. The odor memories we make as children last many years.

Odorants reach the olfactory sensory cells in two ways: 1) by inhaling through the nose; 2) by chewing our food aromas are released through the channel that connects the roof of the throat to the nose.nose-and-mouth-are-connected This is one reason why, when we are congested due to a sinus infection, flu, or a head cold, this channel is blocked, affecting our ability to smell and taste our food.

Our sense of smell is also influenced by what is called the common chemical sense. This sense involves thousands of nerve endings, especially on the moist surfaces of our eyes, nose, mouth and throat. These nerve endings help us sense irritating substances – like the tear-inducing power of an onion, or the coolness of menthol.

Types of Smell Disorders

According to the National Institutes of Health, Senior Health, there are several types of smell disorders depending on how the sense of smell is affected.

  • Hyposmia occurs when a person’s ability to detect certain odors is reduced.
  • Anosmia is the complete inability to detect odors.
  • Parosmia is a change in the normal perception of odors, such as when the smell of  something familiar is distorted, or when something that normally smells pleasant now smells foul.
  • Phantosmia is the sensation of an odor that isn’t there.

The Importance of Smell  

Our sense of smell can serve as a first warning signal, alerting us to spoiled food, the odor of a natural gas leak or dangerous fumes, the smoke of a fire. When smell is impaired, it can also lead to a change of eating habits. Some people may eat too little and lose weight, or eat too much and gain weight. In severe cases, loss of smell can lead to depression.

Assessments for Loss of Smell

Serious smell loss can be caused by nasal obstruction that requires corrective surgery or by chronic viral infections with swelling that require special medications. Otolaryngologists are physicians who specialize in diseases of the ear, nose, and throat, including problems affecting taste and smell. An accurate assessment of smell loss includes:

  • Physical examination of the ears, nose, and throat.
  • Personal history including exposure to toxic chemicals or trauma.
  • Smell tests.
  • Discussion of treatment options, such as surgery, antibiotics, or steroids.

Alzheimer’s, Dementia and Olfactory Testing

An impaired sense of smell is normal as we age. Older people become less adept at identifying smells. Researchers estimate that more than one-third of adults over age seventy have olfactory deficits.

Losing our sense of smell could be a sign of brain damage. The sense of smell is often the first sense to go in cognitive decline, even before memory loss. It’s not the nose’s sensitivity that diminishes, but the brain’s capability of identifying what the odors are.  However, not all individuals with smell loss will develop a brain-related disorder.

Olfactory testing is gaining attention as researchers are discovering that changes in odor identification and loss of ability to smell may be an early biomarker in identifying Alzheimer’s, Parkinson’s, and other neurodegenerative disorders. Multiple studies have demonstrated a high correlation between Alzheimer’s disease and the presence and build up of beta amyloid protein and tau pathology in the areas of the brain that help us detect and perceive odors.

In one study, researchers at the University of Florida asked over ninety participants to smell a spoonful of peanut butter at a short distance from their nose. Participants included persons with a confirmed early stage Alzheimer’s diagnosis, persons with other forms of dementia, and those who had no cognitive or neurological problems. Only those with a confirmed diagnosis of early stage Alzheimer’s had trouble smelling the peanut butter, with their left nostril. The difference in smell between left and right nostril is unique to the disease. Currently, a smell test is not used as a diagnostic tool, but only to confirm an Alzheimer’s diagnosis. The theory is that, as dementia begins and progresses, the parts of the brain, particularly on the left side, that distinguish odors start to deteriorate. The brain is less capable of identifying smells.

At the 2016 Alzheimer’s Association International Conference in Toronto, researchers at Columbia University Medical Center, New York, reported on a study of 397 participants with an average age of 80. The study tested the predictability of dementia transition and cognitive decline using the 40-item University of Pennsylvania Smell Identification Test (UPSIT). october-8-smell-testThe test involved a scratch-and-sniff test of familiar scents like turpentine, lemon, licorice, and bubble gum. Participants were followed for four years. Their conclusions were that odor identification impairments were predictors of the transition to dementia.

How You Can Help

Smell ensures we maintain our personal hygiene and offers us an essential interaction with the world around us. Smell is essential for giving us pleasure from simple things such as flowers and food. For many people smell also helps to re-create memories.

Declines in the sense of smell are not obvious to detect. Although smell is not directly life threatening, it can still impact one’s quality of life. Nutrition and safety concerns are heavily linked to smell. People who have total or partial loss of the sense of smell are almost twice as likely to have some kinds of accidents than people who have normal smell function: cooking-related accidents; exposure to an undetected fire or gas leak; eating or drinking spoiled foods or toxic substances.

1) A Medical Checkup

Since changes in a person’s smell can occur for numerous reasons, schedule a medical checkup to ensure that there is no tumor, polyps, physical blockage or condition that might require treatment.

2) Preventing a Fire or Gas Leak

Your loved one may not be able to tell or smell that he or she left something burning on the stove or that gas is leaking and causing danger. Place sensors in their houses that can detect and warn of gas or smoke, and ones that can pick up the odor of dangerous airborne chemicals. Make sure smoke detectors are still working and change batteries on a regular basis. There are also items such as the “Fire Avert” detector. This invention detects a stove fire by smoke rather than heat. When triggered by the sound of a smoke detector, it shuts off power to the stove. (See below for description details.)

3) Labels on Bleach and Other Chemicals

Make sure that bottles of bleach, ammonia, and other chemicals are clearly marked in large letters, or kept locked away so they are not mistaken for liquids to drink.

4) Ensuring a Healthy Appetite

About 95% of what we think is taste is actually smell. With loss of smell, foods may taste different or have little or no taste. Plan meals that contain foods with different flavors, spices, and textures (e.g. creamy, crispy, crunchy). october-smell-herbs-restaurant-939436_640Try experimenting with a variety of spices and fresh herbs. To prevent malnutrition, ensure that the food your loved one consumes has appropriate levels of vitamins and nutrients.

5) Marinate Meat and Fish

One way to add a lot of flavor to meats and fish is to soak them in a marinade for a few hours or even overnight. Grocery stores carry a variety of prepared marinades, or you can make your own with simple pantry ingredients. Keep any foods in the refrigerator when they’re being marinated so that they remain safe to eat. Once the food is done marinating, cook it as you usually would and have your loved one try it. It just may be that what they previously couldn’t taste well now tastes great.

6) Preventing Food Spoilage

When shopping for food, try to buy in small portion sizes rather than bulk. If you do buy in bulk, then divide food into one-portion size individually sealed packages to store and cook.  Check the pantry shelves, refrigerator and freezer at least once a week for outdated, moldy and spoiled food.

7) Daily Hygiene

Many persons with smell loss have no idea that they have body or clothing odor, even if they do the “sniff” test. If they realized this, most would be embarrassed. If just the thought of bathing or showering your loved one makes you cringe, take a look below at the California Central Chapter’s recommendations and tips.

Avoid pointing out that clothes they are wearing are dirty or smelly. This puts your loved one on the defensive and could set up an argument. Instead, remove the soiled clothing from their room at night once your loved one is sound asleep. They’ll forget about it the next morning if there’s something else handy to put on. You might also purchase identical outfits, so that one can be washed while the other is worn.

8) Mold and Mildew

When you walk into the home, is there a musty smell? Your loved one may not be able to notice this smell. It is due to mold or mildew which are both fungi spores and could become a health problem. There are cleaning solutions available on the market. Air movement is also important for removing moisture and odors.  

Understanding the loss of one’s sense of smell and its associated problems will surely maximize your loved one’s quality of life, help them retain their independence longer, and even avert a dangerous accident.

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

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( Sources used in preparing this article: 1. National Institutes of Health/Senior Health; 2. National Institute on Deafness and Other Communication Disorders; 3. The Monell Chemical Senses Center; 4. Alzheimer’s Association/AAIC.)

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Watch this four-minute TED-Ed animated explanation of our remarkable sense of smell: http://ed.ted.com/lessons/how-do-we-smell-rose-eveleth.

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To read more about the Fire Avert product, go to: http://www.firerescuemagazine.com/articles/print/volume-8/issue-1/professional-development/firefighter-s-invention-stops-kitchen-fires.html. This product is available through the Alzheimer Store. You can get a 10% discount by placing your order through my website: http://caregiverfamilies.com/products/.

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Find good tips on bathing with this newsletter from the California Central Chapter of the Alzheimer’s Association: http://www.alz.org/cacentral/documents/Dementia_Care_32-_The_Battle_of_the_Bathing.pdf.

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Dementia care advocate and trainer, Teepa Snow, has a short video that describes the loss of smell:  https://youtu.be/j9FFLaymycg.

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This four-minute video on problems with smell is by the National Institutes of Health: http://nihseniorhealth.gov/problemswithsmell/aboutproblemswithsmell/video/smell1_na.html?intro=yes.

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If you found this blog beneficial, please share it and “like” us on Facebook: https://www.facebook.com/CaregiverFamilies/. Sign up for my free newsletter that accompanies each new blog with extra tips and resources for our subscribers.

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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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Lewy Body Dementia

Little people. Children. Small furry animals. Intruders in the house. These are some of the common visual hallucinations that persons diagnosed with dementia with Lewy Bodies (DLB) experience during the course of this very unpredictable disease.

Neurons

Neurons

Slow and rigid movements, staring spells or blank looks, incoherent thinking, excessive daytime sleepiness, and loss of balance may also be indications of DLB.

“This is the most common disease you never heard of, and yet the second most common form of degenerative dementia after Alzheimer’s,” remarked neurologist Dr. James E. Galvin, professor and associate dean for clinical research at the Charles E. Schmidt College of Medicine. Dr. Galvin is also a professor at the Christine E. Lynn College of Nursing, Florida Atlantic University. I had the privilege to hear Dr. Galvin’s presentations on DLB at two recent local conferences. While I had heard of this form of dementia, I had no idea of its symptoms and the difficulties associated with getting accurate diagnoses. I feel compelled to share with you what I learned at these conferences, in the likelihood that your loved one may exhibit symptoms of DLB. Few individuals and medical professionals are even aware that DLB exists. Your family practitioner is likely one of these.

Lewy Body Dementia affects about 1.4 million people in the US. It is not rare, but is often mistaken for Alzheimer’s Disease (AD) or Parkinson’s because it has symptoms of both these conditions. It is more common in men, typically begins at age 50 or older, and is a more rapidly progressive disease than AD.

A German neurologist, Dr. Friedrich Lewy, working in Vienna in 1912, discovered abnormal protein deposits in people with Parkinson’s disease. These deposits are now called “Lewy  bodies.” They are spherical reddish structures, abnormal clumps of protein called alpha-synuclein that develop inside nerve cells. In a healthy brain, this protein plays important roles in neurons, especially at synapses where brain cells communicate with each other. In DLB, the protein forms clumps inside neurons, “gum up” these nerve cells, and thus cause the cells to die.

Slide of a Lewy Body

Slide of a Lewy Body

Lewy Body Dementia is an umbrella term for two related clinical diagnoses, and shows itself in three possible ways:

  • Some individuals start with a movement disorder that is diagnosed as Parkinson’s disease and later develop dementia. This is called Parkinson’s Disease Dementia (PDD).
  • Other individuals start with cognitive/memory problems that might be mistaken for Alzheimer’s. However, over time they develop two or more features that distinguish it as dementia with Lewy bodies (DLB).
  • A third small group of individuals present with hallucinations, behavioral problems, and difficulty with complex mental activities.

Over time, all of these individuals will develop very similar cognitive, physical, sleep, and behavioral difficulties.

According to the Lewy Body Dementia Association, the symptoms can include:

  • Impaired thinking, such as loss of planning and processing information, memory, or the ability to understand visual information.
  • Fluctuations in cognition, attention or alertness. Some days the person will be doing well; other days they will be unresponsive or seem near death.
  • Problems with movement including tremors, stiffness, slowness, shuffling gait, repeated falls, and difficulty walking.
  • Visual hallucinations.
  • Sleep disorders, REM behavior disorder, such as acting out one’s dreams while asleep, shouting and grunting.
  • Behavioral and mood symptoms, including depression, apathy, anxiety, agitation, delusions, or paranoia.
  • Changes in autonomic body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

Dr. Galvin told conference participants that there is often a delay to diagnose and treat this form of dementia because it is commonly misdiagnosed as a late-onset psychiatric disorder. It is common for the person experiencing DLB symptoms to see three to four doctors before a diagnosis is obtained. An early and accurate diagnosis is critical and essential because DLB patients are extremely sensitive to certain drugs that can make their symptoms worse. Antipsychotic medications can increase the risk of death in elderly persons with DLB. While there are no medications approved yet to treat DLB, Dr. Galvin noted that there are medications approved to offer symptomatic benefits for cognitive, movement, and behavioral problems.

Dr. Galvin was instrumental in developing and testing a tool that helps detect DLB. It is called the “Quick Dementia Rating System.” It is a 10-item questionnaire available to download free and fill out at home. It takes about 3 – 5 minutes to complete. Each of the ten items has five possible answers increasing in severity of symptoms. You choose one answer that best fits each category to get a composite risk score. Scores range from 0 to 10, with higher scores representing greater cognitive impairment.

If you suspect that a loved one may have DLB, download this questionnaire below. Then take the test with the score to your family doctor or a neurologist. Extensive testing will likely be needed before a definite diagnosis can be made, but this can initiate that process.

Dr. Galvin is hopeful that a cure is on the way in the near future. Please check out the resources I note below, especially the website of the Lewy Body Dementia Association and their videos. My hope is that more individuals can be diagnosed early on to benefit from a longer quality of life.

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

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Download the “Quick Dementia Rating System Questionnaire” here: http://med.fau.edu/research/The%20Quick%20Dementia%20Rating%20System%20Instructions%20and%20Form.pdf.

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For a booklet about DLB information, go to: https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction.

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For resources, videos, and caregiver information, check out the Lewy Body Dementia Association, go to: https://www.lbda.org/.

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Watch a five-minute presentation from Professor Ian McKeith, President, of the Lewy Body Society UK: https://youtu.be/6lw1WscrIvY.

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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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Unload the Baggage of Unhealthy Guilt

If you are a family caregiver, you are an incredible person, in my estimation! Being a caregiver for a loved one diagnosed with dementia is at times emotionally and physically exhausting, especially as the disease progresses.  Your life doesn’t need any additional burden.

Unnecessary Baggage

Unnecessary Baggage

To be blunt – no caregiver can afford to carry around the baggage of  “caregiver guilt.” It is a toxic, consuming emotion that only drains and wastes one’s energy needed for other tasks. Let’s take a closer look at what it involves.

Guilt is a complicated emotion. Just to clarify from a psychological perspective, there is “good” healthy guilt and “bad” unhealthy guilt. Healthy guilt serves as an internal moral compass that alerts us that we have done something wrong, acting against our own values or convictions. When our guilt is healthy, we take responsibility for the choice we made. We are accountable for our action, and then try to do what we can to remedy the situation. Sometimes asking forgiveness will be necessary on our part.

Unhealthy guilt is an exaggerated sense that we have done something wrong. It serves to overwhelm and burden us. This tends to happen whenever we take care of our own needs and say “no” to someone else’s. Saying “no” has nothing to do with loving or not loving. It usually has to do with the reality of the situation. Unhealthy guilt also saddles us when we constantly berate ourselves for an imagined wrongdoing, apologizing excessively beyond what is necessary.

From time to time, we may feel resentful because the illness has changed our lifestyle. From time to time, we may become crabby, short-tempered, or frustrated. From time to time, we may have to make decisions or take a course of actions that are not agreeable to our loved one or other family members. From time to time, we may blame ourselves that we did something wrong when our loved one is angry with us. These are all feelings that surface in caregivers and can lead to unhealthy guilt.

I agonized when we had to make the decision to place Mom in an assisted living facility. I felt guilty that I wasn’t able to take care of her in my home, but had to place her in the hands of strangers. I later realized that Mom needed so much more care than I could have ever given her. I remained involved in her care, but also had the energy to devote to my husband, my job, and balance other commitments.

Alzheimer’s is a disease that NO ONE has control over. It runs its course. Changes in a loved one’s behavior are part of the disease progression. Your loved one will have good days and bad days. You, the caregiver, will have good days and bad days. A psychologist friend of mine calls caregiving for a loved one with Alzheimer’s a “bottomless pit at times. There is always more care that can be given.”

We need to face the fact that there is no such thing as a perfect caregiver. Trying to be one is a recipe for failure. If caregiving becomes your identity, “who you are” rather than “what you do,” it is likely that you will consider any mistake or deficiency a personal failure. Is your guilt benefiting your loved one? Is your guilt serving you in some way?

Here is an exercise to help you reflect on an issue or incident where you felt or still feel guilty:

Gently close your eyes and focus your awareness on your breathing. Hear your own voice whispering to you, “I am calm and relaxed. I am calm and relaxed.”

Bring into focus the incident that gives you a feeling of guilt. Visualize reliving that experience.

Return to the awareness of your breathing and the whisperings of your inner voice.

Identify all aspects of the incident for which you can take responsibility (e.g., blaming, making accusations without having the fact, escalating the problem, making insinuations, not listening, yelling or shouting, knowing better at the time, etc).

Identify all aspects for which you cannot take responsibility (e.g., the circumstances at the time, other people’s interventions, your physical condition such as illness or fatigue, the choice seemed right at the time, etc.)

Now visualize how this event would have evolved if you had not done what you did or had not made your specific contributions.

How would you have liked to present yourself ?

Return to the awareness of your breathing and the whisperings of your inner voice.

If you had the chance to live this experience over again, what would you do differently?

Now visualize and replay this incident having the insights and hindsight you have gained about yourself.

Can you do better the next time if a similar incident were to arise?

When you have made all the changes you have identified, return to the awareness of your breathing.

Notice the feelings and sensations in your body. Notice the sounds around you.

When you are ready, gently open your eyes, noticing where you are, and how you are feeling.

Jot down notes about what you have learned from this experience.

How will you integrate this in your daily life?

What has been the value of this experience for you?

If you continue to struggle with unresolved guilt that controls or torments you, please consider talking to a trained counselor. They may help you feel safe enough to talk about things that you consider too shameful to admit and rectify that have been buried inside, perhaps for a long time. The Alzheimer’s Association has a 24/7 helpline (1-800-272-3900) where you can speak to a professional about counseling services.

If caring for a loved one begins to feel overwhelming and too difficult to manage, it is time to consider bringing in home care help or placement in a licensed facility.

suitcases-pixabay1181806_640There is no magic solution we can take to overcome unhealthy guilt. For our mental well-being, each of us has to learn to cope, and find our own ways to discard unhealthy guilt. We have to stop berating ourselves, accept what’s done, make amends to fix or correct any damage, and decide to let it go. Do some psychological “spring cleaning.” Make that decision today to unload the baggage of unhealthy guilt. Your caregiving role will be that much lighter!

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

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I want to acknowledge my friend and mentor, Merle Stern, for composing the above reflection on guilt. Thank you for your support and encouragement.

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Peter Rabins, MD, MPh, is the Director of Geriatric Psychiatry and Neuropsychiatry at John Hopkins University School of Medicine. Here is a six-minute YouTube video where he discusses caregiver guilt. Click here: https://youtu.be/l5-s68-hngk.

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According to The Old Farmer’s Almanac, March 20 is the first day of spring here in the USA. Meteorologically speaking, the official spring season always begins in the Northern Hemisphere on March 1 and continues through May 31. I think there’s no better way to celebrate this season than by listening to Vivaldi’s “Spring, 1st Movement.” For your enjoyment, here’s a version mixed with a video of blooming spring flowers: https://youtu.be/znptyp4apW0.

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