David Sedaris in the Reminiscence Neighborhood

 

My daughter Ellen with her grandmother in 2005

Would you like to laugh, for a change?

Read this little story by David Sedaris on The New Yorker website about his last visit to the assisted-living place in Raleigh, North Carolina, where his 98-year-old father was living.

It's subtitled with a quote from the essay: “Who are you?” I want to ask the gentle gnome in front of me. “And what have you done with Lou Sedaris?”

It's about memory loss and the Trump years and the police officer killed by a car ramming a barricade on Capitol Hill, April 2, 2021.

In a wacky conversation, his father asserts, “One of the things I like about us as a family is that we laugh,” he says. “Always! As far back as I can remember. It’s what we’re known for!”

Yes, both David and his sister Amy publish and read aloud hilarious personal stories, often about family life.  But that's probably not what his father was referring to.

Here are my favorite lines, toward the end of the piece:

"For our natures, I have just recently learned from my father, can change. Or maybe they’re simply revealed, and the dear, cheerful man I saw that afternoon at Springmoor was there all along, smothered in layers of rage and impatience that burned away as he blazed into the homestretch."

My mother, too, mellowed as she lived her last eight or nine years.  That hard edge she needed to get through family crises and her years as a working mother just melted away.  

I used to call it fierce determination, her pursuit of an immediate goal, whether driving from our door a Fuller Brush salesman or making sure my father took the civil service exam and regained steady employment.

But part of dementia can be an occasional flash of rage.

One evening I arrived in the Reminiscence Neighborhood about 5 pm, as usual, and began chatting with the caregivers, who were serving meals to forty people sitting at several tables.  

"How are things going today?" I asked.  Every day was different, and anything could have happened.

"We're all good," smiled Marnie Reid, the gentle Filipina leading the evening shift of caregivers.  

I greeted my mother and sat down at a table to talk with her, Marnie, and the other residents and caregivers before pushing Mom in her wheelchair to her room.  

An hour later I returned to the dining area to get a glass of ice water.  Marnie was still cleaning up the kitchen and gave me the real scoop.

"Your mom got upset at the table tonight while they were waiting for dinner," she told me. "She smashed her glass of ice water down on the table."

"Oh no!" I gasped.  "She smashed the glass?  I'm so sorry.  And you cleaned it all up?  Why didn't you tell me?"  I couldn't help giggling as I imagined the scene.

"You don't need to worry about that," laughed Marnie, one of the kindest people I know.  

A visit of a few hours doesn't begin to capture the complexity of life on a floor that is indeed a neighborhood but one where reminiscence is scarce.

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

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.  

Outside for Alive Inside

Only in Telluride would some 200 people sit outside at night in 46-degree weather to watch a documentary on Alzheimer’s.

I’ve seen memorable performances in Town Park—Peter, Paul & Mary, Bob Dylan, Shakespeare in the Park—but Monday evening’s screening of Alive Inside: A Story of Music and Memory takes the cake.

This 2014 film won audience choice for Best Documentary at this year’s Sundance Festival because it focuses on how music—a personalized iPod—can bring joy and vitality to persons who seem locked away from their own past by loss of memory. (Mountainfilm 2014 gave its audience choice award to DamNation.)

Director Michael Rossato-Bennett profiles seven patients in the film, as well as providing statistics and explaining neurologically why Alzheimer’s patients can be reached through music.  Emotion and motion are controlled by parts of the brain that are the last to be harmed; music evokes emotion and often includes dance, so it’s stored in these areas and provides access to pathways long blocked.

I was deeply moved to witness Alive Inside in Telluride, not far from Lone Tree Cemetery, surrounded by the ghosts of old timers, some of whom suffered from dementia in their last years.  My grandfather, his sister Mary, and several others in the family lived most of their lives in Telluride but finally succumbed to various forms of dementia.

My mother, Evelyn Gustafson Eggebroten, was born in Telluride in March of 1919.  Because of the flu epidemic, her mother was not allowed to go to the town hospital to give birth.  As she grew up, she became interested in nursing and eventually taught public health nursing at the University of Maryland.

Evelyn died in 2008 after a ten-year ordeal with Alzheimer’s disease.  In the faces and voices of those interviewed in the film, and in looking up at the stars overhead, I felt her presence.

In her last years on the Memory Care floor of an assisted living residence, I played music of the 1940s and earlier for her—everything from Big Band favorites, ballads and hymns to Lawrence Welk shows.

In doing so, I was only following her training.  She had given her public health nursing students experience with not only door-to-door visits but also trips to laundromats and nursing homes. 

In 1975 she placed her students in Keswick Nursing Home in Baltimore, Maryland, and challenged them to experiment with music as a way of reaching withdrawn patients.  They titled their project “Hello in There.”

In her memoir, my mother describes the effect of music on a German woman who was very quiet and seemed depressed: “I told the students to play tape-recordings of songs this patient had enjoyed in earlier days.  Our son, Bill, had studied German and had a phonograph record of German folk songs.  On a hunch, I made a cassette tape recording of it and let her hear it.  Our depressed patient was thrilled, as shown by her sudden talking and humming with the music of her native songs….”

All of us sitting in the cold darkness in Town Park witnessed multiple awakenings of this sort through Alive Inside.  We came away hopeful about ways to find quality of life for the five million persons in the US who suffer from Alzheimer’s disease.

In fact, as in many of the Mountainfilm presentations, we were given tools to make a difference ourselves, starting with a visit to the Music & Memory website: www.musicandmemory.org. 

Another approach is to support the research of the Institute for Music and Neurologic Function, imnf@centerlight.org.

Awake Inside reports on the overuse of medications to sedate dementia patients into compliant behavior instead of seeing their anger or depression as a natural result of their situation.  I witnessed this problem with my mother when she was hospitalized after disruptive behavior; for days she was so heavily sedated she could not hold her head up.

Dan Cohen, the social worker at the heart of the film, believes that a small investment in iPods and music can heal people in ways that medications can’t. 

One of the patients in the film makes a profound statement about the need for music and joy while living in a nursing home: “Even if you’re dying, you still have to live.”

Alive Inside (73 min.) is available through various online resources such as www.IMDb.com.    The following clip from the film went viral on YouTube: https://www.youtube.com/watch?v=5FWn4JB2YLU

Evelyn’s memoir, Adventures of a Telluride Native, is available at the Telluride Historical Museum and at Between the Covers Bookstore.

For additional information and statistics, see the website of the Alzheimer’s Association:

http://www.alz.org/alzheimers_disease_facts_and_figures.asp?gclid=CLHm9MCnzr4CFQJqMgodbSIAEw#quickFacts

Reflections: 6 years

My mother's life ended six years ago today.

Evelyn with Anne - passport photo, March 1950

She lived from March 12, 1919, to April 9, 2008.
  
She did it all: 
childhood in Telluride and Mancos, 
college in Boulder and Denver, 
serving as a Navy nurse for WWII in Calif., 
love and marriage,
living in Tokyo during the Korean War, 
B.S. and M.S., 
raising four kids in Boulder & Bakersfield, 
teaching nursing at the Univ. of Maryland, 
retirement in Boulder, 
grandkids, 
widowhood,
writing her memoir, 
moving through the various levels of senior care: 

• independent
• assisted 
• memory care
• skilled nursing 
• hospice.

May we all be so fortunate.

I trust in you, O YHWH.
I say, You are my God.
My times are in your hand. 
            ~ Psalm 31: 14, 15.

YHWH, You have been our dwelling place
from one generation to another.

Before the mountains were brought forth,
or the land and the earth were born,
from everlasting to everlasting you are God.

You turn us back to dust and say,
"Go back, O child of earth."

For a thousand years in your sight
are like yesterday when it is past,
or like a watch in the night.

You sweep us away like a dream;
we fade away suddenly like the grass.

In the morning it is green and flourishes;
in the evening it dries and withers.

For we are consumed by your anger;
by your wrath we are overwhelmed.

You have set our wrong-doing before you,
our secret sins before the light of your face.

All our days pass away under your wrath;
we bring our years to an end like a sigh.

The span of our life is seventy years,
or perhaps in strength even eighty;
even then their sum is but labor and sorrow,
for they pass away quickly and we are gone.

Who considers the power of your anger?
Who rightly fears your indignation?

So teach us to number our days
that we may gain a heart of wisdom.
     ~ Psalm 90: 1-12

Do Your StoryCorps Tribute!

StoryCorps is celebrating ten years of giving average Americans the chance to make an oral recording of memories or experiences that will literally go down in history. 

with facilitator Mayra Sierra at the StoryCorps mobile booth

After two people talk in a mobile recording booth, the recording is sent to the Library of Congress, and the pair are given a CD of their conversation.
http://storycorps.org/

My friend Sandy convinced me to go with her to downtown Los Angeles to record a tribute to my mother, Evelyn Frances Gustafson Eggebroten, who died in 2008.

StoryCorps seeks to record voices from many walks of life, including:

• Military voices
• Public school teachers, both urban and rural
• People facing serious illnesses
• People with memory loss
• People affected by the September 11 tragedies
• African-Americans
• Latino-Americans
• Alaskans

Because my mother suffered from Alzheimer's Disease, I checked "Memory Loss Initiative" as the type of recording I wanted to make. 

Sandy is a big fan of StoryCorps, which she listens to on National Public Radio, as do I.  

David Isay, the founder of StoryCorps, was signing his new book Ties That Bind at a local bookstore earlier this week, so Sandy went and had the opportunity to speak with him.  Then she checked the online waitlist and noticed that there was an open hour in the appointments for Friday; she called a friend of ours who couldn't take time off from work, and then she invited me.

Thus we showed up at 10:30 am near the Science Museum and the African-American Museum at Jefferson and Figueroa for our interview.

Our facilitator was Mayra Sierra, who earned an MA in Museum Studies at JFK University in Berkeley, CA.  Her thesis was titled "The Use of Oral History in Engaging Underserved Communities in Museums," and her focus was the Japanese-American National Museum in downtown Los Angeles.

Mayra said that so far there have been 80,000 participants in StoryCorps recording 50,000 stories.

There are permanent recording booths in Atlanta, Chicago, and San Francisco, as well as a few mobile booths that traverse the nation recording local populations.

The booth we recorded in had previously been in Rapid City, South Dakota, and will move to Thousand Oaks, California, and then to Tampa, Florida.  

The most heart-stirring recordings (about 1%) are broadcast via NPR and other media, but the purpose is simply to record lives and to improve listening and group listening skills.

Mayra had recorded an interview with her own mother here in Los Angeles earlier this summer.  She worked at StoryCorps headquarters in Brooklyn, New York, before starting road trips.  She spent two months in Yakima, Washington.

Sandy asked wonderful questions, and I did my best to answer them.  It's hard to remember the important things you want to say in the allotted time of 40 minutes.  

Left to right: Anne, Sandy, and Mayra

I want to encourage everyone to contribute your own story to the Library of Congress by visiting the StoryCorps mobile booth when it comes near you.  Or travel to one of the three permanent locations.  

You can ask a family member to interview you, or you can interview a parent, aunt, uncle, grandparent, or friend.  

If you can't get to one of the locations, you can still interview an elder and record it yourself, or get someone to record you asking questions from your mother or father.

You can interview an older family member and write down all his or her answers.  You can make a timeline of your own life or of major events in the life together of your family.

You can start a blog focused on your senior relative, or you can outline his or her life.

And yes, you can put together a book about your parents or grandparents.

The main thing is to create a gift to future family members and to historians.  

Don't let a life slip away leaving no trace of the person's thoughts and experiences.

I never met two of my grandparents (except as a toddler), and I would dearly love to have a few pages of their words written down or ten minutes of their voices recorded.  My great-grandparents are even more distant from my reach, and I regret that.

For more photos of our StoryCorps experience, see:
https://picasaweb.google.com/102150538747404124091/2013StoryCorpsExperience?authkey=Gv1sRgCIWlhOrnkcmdPg

My Mother's Birthday

Evelyn with Roz's chihuahua, Irie

March 12 will always be my mother's birthday.  

I went to dinner with my daughter and mentioned this anniversary.

It has been almost five years since she died in April 2008.  In the normal course of my life, I don't think about her often, but on holidays and on her birthday, the full force of those last years of caring for her returns to me.  

Her humor and her strong desire to be with us is still vivid in my mind.  She would not want to return to Sunrise after spending Christmas or Easter with us.  

Once when I told her I was driving to Colorado, her home, she demanded to know: "Is there any good reason why I can't go with you?"

Well, yes, several good reasons: the wheelchair, the incontinence, the need for oxygen at the high altitude, the constant care (probably too much for me).  Of course, she didn't remember those things--she just remembered that she belonged in Colorado.

She would have turned 94 this year--but she would not have wanted to live with limited capacity and with caregivers bathing her, feeding her, and changing her Depends.  

Thus it is well that she is gone, but the mystery of someone being fully involved in life and then suddenly absent still haunts me.  

This is the human condition: we have a limit... our lives have a beginning and an end.

So I'll continue to continue to pretend
My life will never end
And flowers never bend
In the rainfall...