Monday, April 09, 2018

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.  

Saturday, December 30, 2017

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.

Monday, April 10, 2017

Stages of dying


Give up beauty.

Give up pride.

Give up walking.

Give up swallowing.

Give up calendars.

Give up memory.

Give up modesty.

Give up life.


Behold beauty.

Dwell in God's presence.

Embrace today.

Seek God's face.

These you will never lose. 

-- Psalm 27:4

Sunday, April 09, 2017

Holy Week, Holy Passing

My mother Evelyn and I in 2007

Today marks nine years since my mother died of Alzheimer's Disease.

This year the day falls on Palm Sunday, the day when Jesus returns to Jerusalem and the confrontations begin that will lead to his death.

This year my friend Kathleen is dying from cancer that began in her uterus and had metastasized to her lungs when discovered in June 2015.

I spent eight hours with her yesterday, from 11 am to 7 pm.  She's been in and out of the hospital since early February.  Her last hospitalization was toward the end of March, followed by a week in skilled nursing.

On March 30 she returned to an assisted living facility, Claremont Manor, and finally agreed to go on hospice.  Yesterday was her ninth day of hospice, and it's clear she only has a few days left to live.

Yesterday was also her birthday.  She turned 77.

How do you wish someone happy birthday as she dies?  It's difficult, but some 12-15 friends stopped by.  She was able to talk with them and enjoy their company briefly, but each visit was also tiring.

I just sat quietly in a chair at her bedside, leaving the room when she had visitors, getting things for her when she asked, listening when she spoke.

She monitored the oxygenation of her blood with a fingertip pulse oximeter.  Her oxygenation stayed around 90% except when she coughed and had to remove the oxygen tube from her nose.  When the pressure was set at 5, she felt a cold wind blowing past her ears.  Her caregiver would not turn the level down without permission from a nurse or doctor, so Kathleen asked me to turn it down to 3, sneakily, and I did.  Later her friend Margaret got the permission from one of her doctors.

We also figured out that where the tube splits into two, one for each nostril, it's important that the ends be pointing up, not down into the bottom of her nose.

Kathleen herself is a cardiologist.  Her heart beat was running about 112 beats per minute, according to the oximeter.  I expressed concern about that, but she waved it away, only following the oxygenation reports.

I realized that her heart was pumping so hard, trying to get oxygen and send it around through her blood.  It was the heart rate of an athlete exercising, running fast.  I knew the heart couldn't keep that up for day after day.

Kathleen had drunk a cup of tomato soup from Trader Joe's that morning.  She sipped water occasionally throughout the day.  When I suggested water, she was grateful, telling me that she forgets to drink.

"Remind me," she said.  I did.  She drank over half a cup of water during the time I was there, but I knew it wasn't enough.  She can't eat solid food or even pureed food.  It's difficult for her to swallow.  I didn't ask her why lung cancer would take away her ability to swallow.  She's also given up milk shakes and Ensure because they have milk in them, which causes congestion in her throat and lungs.

I realized that she's essentially fasting.  A body can't keep functioning without food for long, not when you have fourth-stage cancer and are barely drinking any liquid.  

When I was with her two weeks earlier, she said, "I'm on the way out."

"I'm so sorry," I said.

"It is what it is," she replied.  She says that at least once a day.

Yesterday when she said it, I replied, "But it's not good."

"It's interesting," she said, ever the doctor with a curious mind.

After some other guests had gone, she said, "Don't leave."

A doctor friend sent a birthday gift: fancy ocean-scented lotion and hand soap.  I opened it for her and showed them to her.  I helped her to text a thank you to the doctor.  Her fingers were barely warm enough to send a message when she tapped a letter.  Even knowing how to get names and phone numbers and change screens was becoming hard for her.

"Would you like lotion on your hands?" I asked.

I smoothed it on her long fingers and palm, then on the length of her arm.  I noticed her light brown skin had turned a bit jaundiced.  She only had one functioning kidney, and it was maybe shutting down.

"My skin is so dry," she said.

Later I realized we had enacted the scene where Mary in the Gospel of John, chapter 12, anoints Jesus's feet with costly nard.  "That's for the day of my burial," Jesus said, knowing that he was likely to be arrested and executed.

Light in the room was dimming at sunset.

"The day is so long," Kathleen said.  "And the nights are longer."

"That sounds like what Woody Allen said," I commented.  "'Eternity is so long, especially toward the end.'"  But I immediately wished I hadn't said it.  She was thoughtful, looking eternity in the face.

The whole day reminded me of my mother's death: her not being able to swallow or even drink toward the end, me postponing hospice until she had less than two weeks left-- but we never know how close to the end we are.

Kathleen (right) with Ivone Gebara
I thought my mother would live a week or two longer, so on a Tuesday I didn't visit her until the evening and then only briefly.  She died Wednesday morning, April 9.  Had I known, I would not have gone to teach my class and hold office hours that Tuesday.

I was also thinking of Pat Reif, who died on Palm Sunday of 2002.  I had spent time with her just before she left this earth, too early, with pancreatic cancer.  She was a nun, scholar, anti-war activist, feminist, with doctoral degrees in both philosophy and theology.

Like Kathleen, she had done much good in her life.  Both she and now Kathleen would die during  Holy Week.

At 7 pm I said goodbye to Kathleen.  "I'll come back Thursday," I said, thinking she might not make it to Saturday.  Maundy Thursday or Good Friday--fitting times for a near-saint to leave.

"Thank you for coming," she said.

Friday, April 07, 2017

Hip Replacement--or not?

Suppose your mother falls and breaks her hip, and she's in her 90s.  She's frail and thin.

Suppose she has mild dementia and can't always make her own decisions.  In a painful crisis, she may not be lucid enough to choose.

The doctor rules out surgery to repair the hip with pins because of osteoporosis.  She gives you two options: 

1) Give your mother a hip replacement--a serious surgery that she may not survive.

2)  Just put her into a skilled nursing facility (SNF) and drug her to the point where she doesn't feel the pain of being turned over or moved.  The survival rate after a broken hip is about a year in any case.

What do you do?  What do you do if you and your siblings are divided on this question?

Here's an article that gives you all some background for the decision.  Thank you to reporter Lisa Esposito and U.S. News & World Report (and to my friend Dana for finding the article).

Dr. Alexander Miric, an orthopedic surgeon at Kaiser Permanente in Los Angeles, stresses the seriousness of option two:
"...the mortality of broken hip without surgery is extremely, extremely high.”

Another sentence in the piece jumped out at me, a point made by Dr. Sharat Kusuma, director of adult reconstruction at Grant Medical Center in Columbus, Ohio:
"...Alzheimer’s-type dementia would rule out a patient" [for hip replacement].  

Catch 22:  Dementia cannot be definitively identified as Alzheimer's Disease until autopsy shows the tangles of plaque in the brain.  They thought my mother had Lewy Body Dementia, but it turned out to be ALZ.

Note to self: do not break your hip in your 90s if you get there.

Tuesday, March 28, 2017

Inheriting early-onset ALZ

Congratulations to Niki Kapsambelis for her new book on one family's coping with inherited Alzheimer's Disease.

The Inheritance is about the six children of Galen and Gail DeMoe; all six have a 50% chance 

Read this review and interview by John Williams in the New York Times today: