Friday, January 21, 2022

Music Heals Minds

My mother, Evelyn Gustafson Eggebroten, age 88

Music can help people connect to their memory when they have been unable to recognize family members or to remember who or where they are.

My mother discovered this when she volunteered at a nursing home in the 1970s in Boulder, Colorado.  She made audiotapes of favorite songs and took a boom box on her visits to work with patients.  Having been a public health nurse and professor of nursing at the University of Maryland in Baltimore, she continued to use her gifts in retirement.

Twenty years later, when she herself was suffering from Alzheimer's, I played for her CDs and VHS tapes of music from the Lawrence Welk Show and from church.  The music cheered her and connected her to old memories.

Has Alzheimer's or another form of dementia made it difficult for you to communicate with your mother, father, or other family member?

Listen to a presentation on Music Heals Minds founded by Nandani Sinha in 2019 to help stimulate cognitive function and brain activity in seniors and others facing Alzheimer's disease, dementia, and traumatic brain injury.

Nandani is a mezzo-soprano at Westwood Presbyterian Church, the church I used to attend before the Covid-19 pandemic began.  She performs regularly with the LA Opera, other southern California opera companies, and the LA Philharmonic.  Westwood Pres is a few blocks from UCLA and has had a long history of connection to the music department of the university.  

Nandani's father suffered from vascular dementia in his last twenty years, and she learned that she was able to reach him through music.

On Jan. 15, Music Heals Minds officially launched a world-wide ministry using an online Zoom platform. 

 The CDC lists Alzheimer's disease and other dementias as the sixth leading cause of cause of death and disease among persons 65 years and older.  

"Alzheimer's robs people of their place in time," explains Nandani.  "Through music, they are able to find their place in time again."

Professional musicians lead the therapy sessions and use therapeutic techniques such as mirroring, eye contact, and prompting both verbally and with gestures to engage the participants.  Gradually they encourage memory-care persons to join in the singing, clapping, dancing, and conversation. 

Music Heals Minds is based in Pasadena, California, and has served communities in southern California for two years prior to launching this more widely accessible platform.

If you know someone who needs this help, visit the Facebook page of Music Heals Minds or follow MHM on Instagram.  You can also contact Music Heals Minds through Twitter @healsminds.  

Tuesday, August 03, 2021

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.

Wednesday, July 21, 2021

The day Robin Williams would have turned 70

Robin Williams  (1951-2014)

Today would have been Robin Williams' 70th birthday.

Instead he died at age 63 by suicide with depression caused by Lewy Body Dementia.  

He didn't know that he was in the early stages of this kind of dementia.  He had been diagnosed only with Parkinson's Disease, a related condition in which Lewy Bodies (a protein deposit in brain cells) are also present.  

On the occasion of this birthday, the podcast Genius Life released a video of Robin's son Zak Williams talking about his father's suffering in the last year of his life.

Robin experienced great frustration because his diagnosis of Parkinson's didn't match with the symptoms he was going through both physically and mentally.  

He had more anxiety and depression than what would be typical of Parkinson's alone.

We all think tremors are the main signs of Parkinson's, but some people don't get the tremors.  Robin instead had loss of memory and episodes of extreme anxiety.

"It's a unique form of suffering in the family context," explains Zak in the Genius Life podcast #191.

"Lewy Body Disease is akin to having Alzheimer's Disease and Parkinson's Disease at the same time," says Max Lugavere, who produces the Genius Life podcast and whose mother had LBD.

Robin Williams probably had LBD for about two years before he died.

My own mother's dementia in the last ten years of her life was hard for doctors to diagnose.  

I took her to exams where doctors asked her to walk in a straight line, raise one arm above her head, draw a clock, and answer various questions to determine what type of dementia she might have.  

Because of her gait and other physical symptoms, as well as occasional hallucinations, they said the most likely diagnosis was Lewy Body Disease.  They treated her accordingly, but only an examination of her brain cells after death could reveal what disorders were occurring in her brain cells.

In her case, the post-mortem exam in 2008 revealed amyloid placque deposits around her brain cells, as well as tangles of another protein within some brain cells.  These are symptoms of Alzheimer's Disease.

In other words, she had Alzheimer's, not Lewy Body.  Her father had died of Parkinson's Disease, similar to LBD, so it was not easy for doctors to diagnose her illness while she was alive.

What can we do today?  

  • Seek medical help for signs of depression in one's sixties.  
  • Be sensitive to friends suddenly developing physical symptoms and mental illness later in life.
  • Learn as much as you can about various kinds of dementia that can occur with aging.

See also:

https://www.cnn.com/2020/09/01/health/lewy-body-dementia-explainer-wellness/index.html

https://www.independent.co.uk/arts-entertainment/films/news/robin-williams-death-parkinsons-zak-b1888385.html

https://www.statnews.com/2016/09/30/robin-williams-dementia/

Friday, April 09, 2021

Fugue in Death: April 9, 2021

T-shirt bought in Leimert Park, Los Angeles

Today is 13 years since my sister and I sat at my mother's bedside, holding her hands, while she took her last breaths.  April 9, 2008.  

It's also 10 years since my friend Nancy Hardesty died, a few months after her diagnosis with pancreatic cancer.

I was already in a sober mood when I turned on MSNBC and found Dr. Martin Tobin testifying in the trial of Derek Chauvin for the murder of George Floyd in Minneapolis, May 25, 2020.  

The doctor was explaining that the video of Floyd's death shows that at one point you can see him taking between 6 and 7 breaths in 19 seconds.  The scene replayed as Dr. Tobin counted the breaths taken and showed jurors and television viewers how to observe the shoulders moving.  

George Floyd's respiratory rate was about 22 breaths per minute--much higher than someone sitting in a chair, but normal for someone working hard to breathe, Dr. Tobin said.

My mother, Evelyn Eggebroten, in May 2007

Working hard to breathe... the scene of my mother's difficult breathing played as a counterpoint theme in the fugue of Floyd's death.  The hospice nurse had told me to expect this labored breathing, the "death rattle."

Fentanyl slows down breathing, Dr. Tobin continued.  The autopsy showed traces of fentanyl, but it was having no effect on George Floyd's respiratory rate.  In other words, Fentanyl was not the cause of death. 

"There's not fentanyl on board that's affecting his respiratory rate," he concluded. 

Furthermore, heart disease could not have been the cause of death.  A death from heart disease shows a build up of carbon dioxide in the body or in arterial blood, typically to around 89. 

But George Floyd had a normal amount of CO2 in his body and blood--a value of 35 to 45.  Thus, he did not die of heart disease.  

Next Dr. Tobin explained that George Floyd's last effort to breathe occurred at 20:25:16 (8:25 pm and 16 seconds).  "He was rocking his body, using his entire spine, cranking up his right side to get air into the right side of his chest."  His left lung was completely flattened between Chauvin's knee and the street.

By this time my tears were flowing.  April 8 had been fully turned into a day of witnessing death as well as remembering the deaths.

Graphic testimony continued.  George Floyd can't raise his chest to get air because of the chain on his ankles, the handcuffs, and the knee on his neck, said the doctor.

Chauvin "has his whole weight on him.  You can tell because his boot is not even touching the ground."  (Dr. Tobin later revised the statement to at least 50% of Chauvin's weight being on Floyd's neck.)

"His airway was being narrowed more than 85%.  His body is contorted by handcuffs behind his back.  You need your arms and legs to push up, but he is not able to lift up his rib cage."

George Floyd loses consciousness after 1 minute of the knee on his neck. 

Then he has an anoxic seizure.  You can tell this has occurred, said Dr. Tobin, because his right leg jumps up.  It's an involuntary reaction to asphyxia.

He's dead at four minutes of the knee on his neck, but he stayed pinned to the street for a total of 9 minutes and 50 seconds.  Then a medic tried to insert an airway tube.  

An EKG in the ambulance showed that Floyd's heart muscle continued trying to beat abnormally, but the rapid fluttering could not move any blood. This condition is called PEA, Pulseless Electrical Activity. 

As Dr. Tobin replayed the video taken by Darnella Fraizer, he pointed out the "slight flicking" of Floyd's eye.  But then it stops flicking. 

"That's the moment the life goes out of his body.  One second he's alive, one second he's not.  He's alive though unconscious, then he isn't."

I'm lying on the couch, crying and hugging my chihuahua.

"But the knee remains on his neck for another 3 minutes and 23 seconds," he continued.  Then the officers check his pulse and determine that there is no pulse.  

After there's no pulse, Chauvin doesn't roll Floyd over or try to revive him.  Instead his knee remains on Floyd's neck for another 2 minutes and 44 seconds.  Nine minutes after the paramedics arrive, a breathing tube is finally inserted down his throat.

The cause of death is asphyxia: oxygen deprivation resulting in cardiac arrest.  

Anyone would die from this kind of treatment, says the doctor.  It had nothing to do with Fentanyl or heart disease.

Watching this horrific death flooded my mind, but the scene of my mother's last moments also hovered in the background. 

She lay in her own bed, ten years after a diagnosis of either Alzheimer's or Lewy Body Dementia, being comforted by family.  She was 89 years old.  

He lay on a public street just a few minutes after being accused of passing a fake $20 bill. Four passersby tried to intervene.  Instead of comfort or medical care, he was murdered.  He was 46.  

She lived as a Caucasian female and public health nurse.

He lived and died as an African-American male, perceived as a threat, working as a security guard.  His race and gender caused his death in the racist, gender-obsessed United States of America.

Actually, he was a gentle man, friendly and filled with good humor.



Wednesday, September 30, 2020

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.


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