The Last Journey... So Difficult

My mother, Evelyn, with her book

Care for a person who is dying...

This is one of the most difficult experiences we can go through.  Physically, it requires lifting and turning our loved one's weight.  Emotionally, it is heart-breaking. 

Spiritually, accompanying a friend or family member on that last journey requires courage and faith that we may not be able to find.  It may come down to "acting as if" in order to act at all.

A friend of mine died last Friday just a few months from reaching her 89th birthday, the same age my mother and grandmother were when they died.  

My mother in this photo was 80 years old and doing book signings of her recently completed life story, Adventures of a Telluride Native.  Those were happy days.  

But she fell and broke her right hip at age 85.  Falls are so often the beginning of a downward trajectory.

In the case of my friend, she fell and was not discovered for ten or more hours.  There was hospitalization followed by rehab and skilled nursing, followed by hospitalization again and returning home with hospice care.

We watch as the person we love goes through episodes of frustration with inattentive hospital care, days of loneliness, periods of anger even at those closest to her, and many hours of pain.

It's one of the hardest parts of human life.

My mother was a registered nurse and taught nursing at the University of Maryland in Baltimore.

As her father was dying from dementia in 1976, he developed pneumonia and died about a week later.

"We always called pneumonia 'the angel of mercy,'" she said.  "So often it's pneumonia that releases someone from their suffering."

Yes, indeed.  My friend who died last week went through pneumonia a few weeks before she left this earth.  But of course, she received antibiotics to try to keep her alive.

It's so hard to know when care should be focused on regaining health--and when that kind of care should cease and desist.  We don't want to put our loved one through useless, difficult medical procedures.

The best discussion of these issues is Being Mortal: Medicine and What Matters in the End by Atul Gawande (New York: Henry Holt, 2014).

My mother with her father and brothers in better days.

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.