Thursday, April 04, 2019

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.

Tuesday, March 12, 2019

100 years since Evelyn was born...

Evelyn in about 1943

On March 12, 1919, my mother was born.  At that time in history, fewer people lived to an age where they suffered from Altzheimer's disease.  Or perhaps people's diets and exercise levels were such that they were less likely to develop amyloid plaque in their brains. 

Her grandfathers died of lung damage and tuberculosis after years of working in mines in Colorado. Her maternal grandmother died in 1929 at age 67, but her maternal grandmother lived to age 89 without any kind of dementia.

Here is a brief summary of Evelyn's life and the social and historical context into which she was born.

In January of 1919, life was difficult in Telluride.  Fighting in Europe had ended just two months earlier with the signing of an armistice between the Allies and Germany on November 11.  One in ten people in Telluride had died in the flu pandemic that killed one-third of the earth’s population.  Serena Brown Gustafson was pregnant with her second child. 

Evelyn Frances Gustafson in 1920
When the US entered the Great War in spring, 1917, August Gustafson severe rheumatoid arthritis saved him from the draft.  He was crawling to the stove in the morning to light it before taking heavy doses of aspirin to get through the day.  The young couple with their baby, Reynold, had moved out of August’s parents’ home on West Pacific to 557 West Colorado Avenue, across from their later home at 548 W. Colorado.  

August sold the grocery store on West Pacific to his partner, Matt Lahti, because he couldn’t work.  Then he had surgery to remove both his tonsils and his teeth, possible sources of the infection causing his arthritis.  The arthritis subsided, and he wore false teeth ever after.

But 1918 was another bad year.  In the spring August’s father Andru died of miner’s consumption at age 58 after spending many years in the dusty mines.  At about the same time both August and his former partner were fearing the draft, and Lahti wasn’t successful in managing the store.  He left town in the spring with all the money in the safe, as well as a large diamond, telling August to try to collect on the money owed to the store by local people.  

While closing out the store, August also took a job as bookkeeper at the Black Bear Mining Company, where his father had owned shares.  The mine’s portal stood about a mile above Ingram Falls in a small basin, and August commuted up to the mill located at the falls.  He walked east to the Black Bear tram on the mountainside above the mill and then rode the platform up to Ingram.

In the fall of 1918, however, August came down with the flu and had to stay in a bedroom that Serena was told not to enter.  She passed his food through the doorway.  His uncle Henry Kangas died in Telluride in the epidemic, only 40 years old.  Then in November Serena’s friend Olga Ostrom died of the flu contracted when she went to the American Legion Hospital in Telluride to give birth.  As a result, the doctor told Serena that she had to have her baby at home.  

The family hired a registered nurse from Durango to deliver the baby and live in for ten days afterward, caring for Serena and Evelyn.  Serena’s mother, Martha Neeley Brown, also came to Telluride for a month to take care of Serena and her babies.  

Later Serena’s brother Byron visited, having returned from the trenches in France.  He had been drafted in 1917, and it took several years for him to heal from the shell shock of the Great War.

The day before Evelyn was born, Serena and August’s good friends Martin and Ann Wenger had their first baby, Martin Jr. They had “stood up” with Serena and Gus at their wedding in 1916; the couple’s parents were only informed of the marriage later. 

Thus we have the cast of characters, beginning with 24-year-old Serena, her mother and the hired nurse. Did Serena have contractions in the morning and realize her baby would be born on that day?  Did August stay home from work, or did he walk up to Ingram Falls to keep the books at the Black Bear?  Had he completely recovered from the flu and from the earlier arthritis, or was he still coughing and feeling pain in his joints?  

Years later remembering when Evelyn’s little brother Elbert was born, Serena commented that for August, “His business was always more important than his home.  He had to tend to the store; me having a baby was nothing.”  Evelyn’s arrival meant that at age 26 he was now supporting Serena and two children, and his mother had recently been widowed.  Yet his grocery store was closed and within two years the Black Bear Mine would go out of business and be bought by the Smuggler-Union Mining Company, which had its own bookkeepers.  He was given a job in the mill, but by 1922 he decided to buy back the store on West Pacific and return to the grocery business. 

Was there a snowstorm that week, or was it sunny and cold with a spectacular view of the snow-capped mountains surrounding Telluride?  At least the weather permitted Grandma Brown to travel from Mancos over Lizard Head Pass to Telluride.  And was two-year-old Reynold running around the house as his mother went through labor and birth?  His other grandmother, Minnie Gustafson, was living near Cedaredge, Colorado, with her brother Jakob Kangas.

We don’t know the details of what transpired that day, but we do know that both mother and baby survived.  Evelyn cried a lot, however, and didn’t do well on her mother’s milk, in contrast to little Marty, the strong healthy baby born to Ann Wenger.  The doctor advised using Eagle Brand condensed milk for the baby, but Evelyn refused that too.  Serena reported, “I finally worked out my own formula, by studying baby feeding in the one magazine I took at that time.”  

After the birth of her fourth child in six years, she worked out her own birth control too: abstinence.  The year was 1923, and women now had the vote.  Serena was not going to have a baby every two years for the next twenty years.  August came home later in the evenings, often after playing card games with friends in the back of the store after closing. 

In the story of Evelyn’s birth we see a young family that has been battered by illness and threatened by World War I.  It’s a working-class family perilously close to financial ruin, trying to gain a foothold in the middle class.  

This baby will earn the first college degree in either her mother or her father’s family, and she will have a life-long interest in health and nursing.  Another world war will dominate the third decade of her life and postpone her child-bearing years.  

She will escape the differing social value assigned to “tending the store” vs. “having a baby” by somehow doing both during the 1950s—producing four babies and a career in nursing.  She will pass the difficult issues of work-home balance on to her children.  
Evelyn with her book

Though epidemics and wars will still threaten their lives, her high-spirited perseverance will live on in family legend.

Evelyn Frances, about six years old

Note:  Historical facts from Adventures of a Telluride Native by Evelyn Gustafson Eggebroten (Boulder: Johnson Printing, 1999), pages 84-88.  

A. R. Gustafson with Herschel, Elbert, Evelyn and Reynold

Kermit Eggebroten, Evelyn, and their first child, Anne

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.