"Dementia friendly" music

 

"Dementia friendly"--what does that mean?

On YouTube I found a video of a well-known Christian hymn that says it is dementia friendly.

Listen to: Jesus Calls Us, O'er the Tumult

It's produced by a ministry called Spiritual Eldercare. Their mission is "Ministering to older adults with Alzheimer's and other dementias."

They define "dementia friendly" as 

"Sing-along hymns specially arranged for elders with Alzheimer's and other dementias (shorter, slower, and in a lower key)."

Two things are beautiful about this ministry:

1) that some Christians value those who are warehoused in "memory care" wards and consider their spiritual needs.

2) that they have found ways to modify hymns and to reach them.

Music is one way to reach people whose minds are failing. I know this from my years of accompanying my mother through her Alzheimer's.

When you slow the music down and make the lyrics shorter and more understandable, you are throwing a life preserver out to a person who could sink under the water.

Caring for Caregivers

Caregiver Dave spoke at the marketing seminar I attended today.

His wife suffered a serious stroke ten years ago, and he ended up becoming her caregiver.  

When Dave Nassaney wrote a book to help others suddenly thrust into this kind of role, he found himself on television talk shows and even giving a TED talk.  He wrote three more books.

So he was the right person to inspire all of us beginning marketers at the Rockstar Marketing Bootcamp today at the Westin Hotel near the Los Angeles airport.

Reflections: 10 years ago...

Evelyn Frances Gustafson Eggebroten with Irie in 2007

Ten years ago today my mother died.  

She would have been 99 years old now, if she had lived.

She died quietly, peacefully, with my sister and I holding her hands.  

That day and the next few days were very stressful as my sister and I went to the mortuary to make decisions and sign papers, cleaned out her room at Sunrise Assisted Living, and arranged plans for her memorial service.  

But she is at peace.  

I am grateful not to have had continued responsibility for her care over the last ten years.  There were so many doctor visits, care decisions, arguments, and sad moments....


I don't miss her now as much as I did at first.  There is so much else to think about--my kids, my own health, my writing, travel, and politics during this terrible era post-November, 2016.

I haven't gone through her twenty boxes of papers and photos and mementos--they still sit mostly untouched.   I need to do that, but I have postponed it in favor of gardening, cooking, cleaning, reading, blogging, classes, travel, and political demonstrations--in a word, my own life.  Also I was still teaching through June, 2015.

I feel sad when I think of my mother.  There are things I couldn't tell her if she were here. 

There are things she couldn't do because of being wheel-chair bound and being incontinent.  She would want to be fully part of my life and my kids' lives... but it wouldn't be possible.

I love her.  I feel so much compassion for her--she tried so hard, she had so much gumption.  

• She got out of her small town, Telluride, Colorado. Some didn't.
• She became an R.N. and served in the Women's Army Corps in World War II.
• She married and raised four kids.
• She earned a Master's degree in public health nursing while I was in fifth and sixth grades, writing a thesis on visiting nursing of people with tuberculosis.
• She taught at Bakersfield Junior College and the University of Maryland.
• She volunteered with the Red Cross, Meals on Wheels, and visited senior care facilities in Boulder to evaluate them.
• She completed an autobiography--with my help.
• She survived two broken hips, ten years apart, as well as multiple embolisms in her fifties.
• She loved her grandchildren, visiting them and smocking dresses and shirts for them.
• She cared for her elderly parents.
• She joined PEO and the DAR in her sixties and seventies.
• She even took part in a women's circle at church.
• She cared for her husband until he died at 79, when she was 74.

When I was in my twenties and thirties, and she was in her fifties and sixties, I thought she was so old.  Now I am turning 70 this summer and don't feel a bit old!  I have so many things I want to do before I die--mainly write and travel.

I'm acutely aware of how short my remaining years are.

She was diagnosed with dementia at about 80 years of age... and I'm close to 70.  So I probably have about ten good years at most to do the things I want to do.  That feels short.  I'd rather have twenty good years of reading, writing, traveling, sorting and giving away my belongings.  

Unlike her, I have had breast cancer nearly four years ago and I have atrial fibrillation.

Like her, I am now on a blood thinner.  That's scary--I can't fall and hit my head, but I love to be alone in the mountains hiking.

I just finished reading Being Mortal by Atul Gawande--a powerful experience.  I read it slowly, thoughtfully.

"What makes life worth living when we are old and frail and unable to care for ourselves?" he asks on page 92.

Mom holding up a string of holly with berries, Christmas 2007

Self-actualization, he says, using Maslow's hierarchy of needs.  Those needs change as we age.

By the end of the book, he is discussing "palliative care"--a new term meaning care that focuses on making the most of each day rather than on curing us.  

People still want "the chance to shape one's story," he says, to have some autonomy and control (p. 243).  And to avoid suffering.  

Atul Gawande on Care of Elderly Persons

My mother at Christmas 2007 (her last)

I am deeply moved by Atul Gawande's account of the changes in our brains and bodies as we age--if we are fortunate enough to age.

Many changes occur whether or not we acquire dementia as a result of a stroke or because of Alzheimer's Disease.

In Chapter 2 "Things Fall Apart," Dr. Gawande discusses the process of aging.

Here are some gems from his account:

**  "Remember that for most of our hundred-thousand year existence--all but the past couple hundred years--the average life span of human beings has been thirty years or less" (p. 32).

**  "Our bodies accumulate lipofuscin and oxygen free-radical damage and random DNA mutations and numerous other microcellular problems.  The process is gradual and unrelenting" (p. 35).

**  "Even our brains shrink: at the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room...  The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized... By age eight-five, working memory and judgment are sufficiently impaired that 40 % of us have textbook dementia" (p. 31).

**  "In 1950 children under the age of five were 11% of the US population... those over 80 were 1%....  In thirty years, there will be as many people over eighty as there are under five" (p. 35-36).

**  "...a lot of doctors don't like taking care of the elderly" (p. 36).

**  "The single most serious threat [is]... falling.  Each year, about 350,000 Americans fall and break a hip.  Of those, 40% end up in a nursing home, and 20% are never able to walk again" (p. 40).

     Falling and breaking a hip was my mother's experience twice.  After her second fall at age 85, she had to be in a wheel chair.  Rehab with a walker was not successful.  

** Coughing when drinking water or eating occurs when "lordosis of your spine tips your head forward... Try to swallow while looking up: you'll choke once in a while" (p. 51).

     For my mother, coughing became a big problem in her last few months.  In the last few weeks, she couldn't drink water.  This was partly caused by ALZ-- the inability of her brain to control her swallowing muscles.

Because I will be turning 70 in 2018, I am thinking about aging and mortality.  This book by Gawande, a surgeon in Boston, is a road map for all of us who care for elderly relatives or are in our 60s or 70s or 80s ourselves. 

A year ago I was reading When Breath Becomes Air by Paul Kalanathi, who deeply respected this book by Gawande, but not until this week did I begin Being Mortal.

The Happy Side of Dementia

My mother with the chihuahua, Irie, in 2007

Dementia can be caused by several types of events, not just by Alzheimer's Disease.

Lewy Body Disease and Parkinson's are also associated with dementia.

Stroke is another frequent cause of impaired function of the brain, including the frontal temporal lobe, which is part of dementia.

Thank you to NPR this morning for the interview with Christine Hyung-Oak Lee, who had a stroke at age 33.

Her book is called Tell Me Everything You Don't Remember.

http://www.npr.org/sections/health-shots/2017/02/11/514559596/after-a-stroke-at-33-a-writer-relies-on-journals-to-piece-together-her-own-story

In the interview, Christine mentions "Depression is part of recovery from stroke," Christine says in the interview.  "It's grieving for the loss of one's former self."

On the other hand, in the initial stage when she had only 15 minutes of short-term memory, she reported being happy and at peace.

"It's actually quite pleasant," she said.  

That rang true for me.  When my mother was living on the Memory Care floor of an assisted living, I noticed her general calm and contentedness and that of most of the other residents.

She didn't remember that her brother had died a year before, nor that her mother had died twenty years earlier.  She had few expectations or worries.

She was more relaxed and happy than she had been during most of her former life, when she was married to my father, an alcoholic, and was working outside the home while raising four kids.

Of course, irritability is also part of ALZ to varying degrees and at different times of the day.  Waiting for meals or for help is difficult.  

My mother wanted to be at my house, not in a facility, and when I would leave after a two-hour visit, she didn't understand why she couldn't go with me. 

Another positive note: I was encouraged to hear that Christine regained much of her brain function with time.

Older and More Joyful

My friend Sharon Billings and I are closely tracking the event of aging and its effects on our lives and the lives of our friends.

I thank her for pointing out David Brooks' essay in the New York Times this week about the emotional effects of aging:

http://www.nytimes.com/2014/12/05/opinion/david-brooks-why-elders-smile.html?rref=collection%2Fcolumn%2Fdavid-brooks

He confirms what I have long suspected: old age can be a time of greater happiness, even in the presence of health issues and other losses.

I noticed how happy my mother was in her last several years--not all the time, but on the whole.  She had to live in assisted living, but it was a comfortable and warm environment with great caregivers.  She didn't spend any time focusing on the large home she had sold a few years earlier.  

When she came to my house on Sundays and holidays, she often said she wanted to stay and spend the night, but she accepted the reality that it was easier to return and sleep at Sunrise Assisted Living.  

There was a sharpness in her face during her fifties and sixties, when she was still ambitious, hard-working, tired and anxious.  That vanished in her eighties.

Brooks points to well-researched changes in the brain as the source of this happiness and relaxation: greater focus on the present, less worry about the future.  

He doesn't address worry about death--how and when it will happen, whether it will be painful.

"I'd like to think that people get steadily better at handling life's challenges," Brooks writes.  Really?  That sounds like Emile Coue's mantra,  "Every day in every way I'm getting better and better."  Sheer fantasy--though positive thinking does have beneficial effects.

Brooks lists four changes that really do happen in many older people:

1) Bifocalism--the ability to see a situation from multiple perspectives;
2) Lightness--the ability to be at ease with disappointments and loss, realizing it's not the end of the world;
3) Balance--the ability to meet competing demands in a given situation, such as being honest but kind;
4) Empathy and pattern awareness--what Brooks calls "an intuitive awareness of the landscape of reality."

For each of these changes he cites a book or research study.

I like his discussion of bifocalism, especially the ability to be detached while at the same time compassionate:

"Only with experience can a person learn to see a fraught situation both close up, with emotional intensity, and far away, with detached perspective," he writes.

This dual focus reminds me of T.S. Eliot's poem "Ash Wednesday":  "Teach us to care and not to care."

Persons with dementia may not achieve all these four skills, but they are really good at being "in the moment."  Sometimes the moment is all they have; this was true for many of the residents on the memory-care floor where my mother lived.

I'm pretty content with the possibility of ending my life in a blissful fog while others care for me, making sure I am eating, sleeping, and being diapered. 

My mother did have frustrations and outbreaks such as smashing a glass of water on the dining room table, but five minutes later when I arrived she was cordial and happy to see me.  

As for Ekekiel Emanuel's essay about preferring to die at 75 yrs. rather than waste away later, why bother to make such wishes?  

The bottom line is that we don't get to choose when to clock out... unless we oppose both law and custom.

How's your CRP?

My brother Bill, the doctor, tells me that the drugs they gave Mom ten years ago for dementia were worthless.

Now a blood test can determine whether you have elevated levels of a certain protein, CRP.

Apparently the liver produces more of this as we age (especially if you have the wrong genes), and too much of this protein causes inflammation of blood vessels in the brain and elsewhere.

Inflammation is one cause of the production of the placque that causes Alzheimer's Disease.

There are now medications to lower the production of this C-reactive protein.

Of course, exercise and low intake of carbohydrates and sugar are also good.

http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html

Make sure you are tested for the levels of CRP in your blood--and if you do, start doing things to lower your level.

Deja Vue

I have two dear friends in their 80s who live together, friends for a long time.

Lucy has been diagnosed with dementia and requires assistance with daily tasks.  Greta is her caregiver.  

I visited them today, and it was like watching myself with my mother in 2007. 

Lucy recognized me and was gracious and gentle, as usual.  She loves flowers and is devoted to her garden. 

A nurse was there for her daily visit, wrapping Lucy's elbow, injured in a fall and slow to heal.

There was also a jigsaw puzzle, just completed, on the dining room table, part of Lucy's mental exercises.

After the nurse left, Greta asked if Lucy needed to use the restroom and then assisted her as she stood and used her walker to get there.

After ten minutes, nothing had happened, so Greta had to decide whether to bring Lucy back to the living room.  

I remembered times when I would wheel my mother to the toilet, turn on water at the sink, and wait.  She had no control over her bowels, so I would often end up taking her back to her chair with no results.

Then, of course, after the movement of getting up and down from the chair and the toilet, she would announce that she needed to urinate.  

I would get so impatient: "No!  You can only go to the bathroom once per hour, Mom."

Now if I'm drinking lots of fluids and make two visits to the toilet within less than an hour, I wish I had been more accommodating.  

Feeling guilty over not doing more is one ever-present aspect of care-giving.  Where do we draw a boundary that allows for self-care as well as attention to the needs of another?

Greta gave Lucy a bit of Metamusil and explained to me that she had forgotten to give Lucy her evening laxative the night before.

"Can you help me get it out?" asked Lucy.

I remembered my aunt, who has a daily visit from a nurse to dig the waste from her bowel.

Ah, the trials we never imagine we might face.