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/

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.

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.

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.

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.  

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.

In Memoriam: Kathleen Mirante

My friend Kathleen died on Monday, April 10, 2017.

Stages of dying

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.



Living

Behold beauty.

Dwell in God's presence.

Embrace today.

Seek God's face.

These you will never lose. 

-- Psalm 27:4

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.

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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3597289/

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).

http://health.usnews.com/health-news/patient-advice/articles/2015/04/08/getting-a-hip-replacement-in-your-90s

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.

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:

https://www.nytimes.com/2017/03/28/books/tell-us-5-things-about-your-book-one-familys-war-against-alzheimers.html

Trump & ALZ

If you search Twitter, you will find thousands of tweets by using the search terms "Trump dementia."

I first heard these reports in June of 2016.  

They began multiplying in January as the inauguration of Trump approached.

Many of these tweets cite articles on the question of whether the president has dementia.

One interesting and brief summary is "Linguistic Features Identify Alzheimer's in Narrative Speech" by Charles Moore, who reviews a study headed by Dr. Frank Rudzicz.  

https://cdn.alzheimersnewstoday.com/wp-content/uploads/2015/12/WinterLightteam.jpg

“Every caregiver knows that people with dementia have good days and bad days — we can tell this by talking to them, because speech is a rich source of information on the brain’s cognitive function,” says study co-author Dr. Jed Meltzer, a neurorehabilitation scientist with the Rotman Research Institute at Baycrest Health Sciences, a premier international center for the study of brain function. 

I've been noticing quite a few ALZ-like qualities in Trump's speech.  I'm familiar with this speech because of spending so much time with my mother in her last four years.

*  repetition -- Trump repeats statements so often in his speeches.  He repeats words like "very very very."

*  simple vocabulary --  Trump doesn't know how to praise a politician or diplomat or anyone else using complex, precise vocabulary.  All he does is repeat five simple words:  great, huge, terrific, amazing, big.  For those he doesn't like it's loser, sad, stupid, horrible, weak.  

* simple sentences -- Subject, verb, period.  There are very few sentences that begin with "Although, when, whether, if" or other subordinating conjunctions.  

* simple ideas and lack of detail in presenting them.

There are other signs of his dementia beyond speech:

• his inability to remember what he has said or done earlier.
• 
  
• his grandiosity, a part of my mother's Alzheimer's.  During late 2007 and early 2008, she confused me with Hillary Clinton and thought I was running for president.  Then she thought my husband was running.
• 
  
• his lack of impulse control--like tweeting that President Obama had wiretapped Trump Tower.  His frontal lobes and temporal lobes are not functioning well.

http://www.alz.org/dementia/fronto-temporal-dementia-ftd-symptoms.asp

These kinds of things convince me that Trump has dementia.  He lacks the 

The novelist described Trump as a speaker "wielding a vocabulary of seventy-seven words that is better called Jerkish than English.”

http://www.newyorker.com/magazine/2017/01/30/philip-roth-e-mails-on-trump

https://www.inverse.com/article/27515-donald-trump-bad-vocabulary

How to diagnose ALZ

Dr. Frank Rudzicz and team

There's now a way to diagnose Alzheimer's Disease with 80% accuracy.

Because science didn't have an accurate way to diagnose ALZ in 2004 through 2008, my mother's dementia wasn't correctly identified until after her death, when an autopsy was done.

Her physical, behavioral, and mental symptoms were tentatively diagnosed as Lewy Body Dementia, but instead of small hard Lewy bodies, her brain held the protein tangles of ALZ.

Developed by Dr. Frank Rudzicz at the University Health Network's Toronto Rehabilitation Institute, the new method was reported in the December 2015 issue of The Journal of Alzheimer's Disease.

https://alzheimersnewstoday.com/2015/12/15/alzheimers-disease-markers-found-speech-patterns/

"Linguistic Features Identify Alzheimer's Disease in Narrative Speech" is the title of the research report.

Speech samples were taken from 167 Alzheimer's patients and 97 control persons of similar ages and backgrounds.

The aspects of speech analyzed included 
lexical diversity, syntactic complexity, semantic content, and acoustics.

Now a start-up company called WinterLight Labs is working to commercialize the techology and make it available to the public. 

Signs of Alzheimer's Disease

People fifty years and older often put themselves down with the comment, "I'm having a senior moment."

I don't like to hear this when the thing misplaced or word forgotten is something that could happen at any age.

Let's know the difference between normal forgetfulness and early signs of Alzheimer's.

Go the the Alzheimer's Association website to learn the important differences.

www.alz.org

http://www.alz.org/10-signs-symptoms-alzheimers-dementia.asp

In brief, they are:

1. memory loss that disrupts daily life
2. challenges in solving problems
3. difficulty completing familiar tasks
4. confusion with time or place
5. trouble understanding visual images and spatial relationships
6. new problems with words in speaking or writing
7. misplacing things and losing the ability to retrace steps
8. poor judgment
9. withdrawal from work or social activities
10. changes in mood and personality

Thinking of Evelyn in 2017

My mother and I on Zuma Beach with Pt. Dume behind us

My mother would have turned 98 today.

Fortunately, she did not have to face that birthday.  She succumbed to Alzheimer's Disease at age 89 in 2008.  To live longer in her state of incapacitation would have been hard for her to bear... though she did feel a wistful sense of loss at leaving this earth.  

Her friend Janet Krause did turn 98 this year.  

Her Christmas card showed four generations:

• herself
• her daughter Karla,
• her granddaughter Jenny, and
• her greatgrandson Seth, age 3.

It's a beautiful photo.  

I appreciate knowing that a dear friend of my mother's is still alive and remembers Evelyn and their days together at Children's Hospital in Denver training to be nurses, graduating in 1941.  Out of the 28 who started in 1938, only 19 completed the program and became Registered Nurses.  Several of them went on to serve as military nurses in World War II.

Janet wrote me a lovely note, citing challenges as well as blessings:

"Some of the challenges include poor eyesight and issues with memory.  Some days can be more challenging than others.  Overall, though, my health is pretty good for a 9-year-old.

My many blessings include being a resident at Countryside Living Retirement and having so many wonderful friends.  My daughter retired in July, so she has been able to visit more often along with her husband Deen, granddaughter Jenny, and great-grandson Seth (3).  I am planning to go to Denver for Christmas so I will be able to visit most of my family at that time.  Other blessings include two very dear friends who come from out of town regularly to visit and help, Linda Ripley and Barb Schommer.

May God's blessings fill your heart this Christmas!

I do think of you, Anne--I am getting too old.  JK"  

The last line is hand-written.

What a blessing to have one's mental faculties at age 98.  

My mother inspires me to do all I can to slow or avoid my own development of Alzheimer's Disease.

The things I do include:

• Trying to keep my weight down to about 150 pounds.
• 
  
• Trying to walk 10,000 steps per day as monitored by my Fitbit.
• 
  
• Taking occasional hikes.  I used to jog twice a week, but I have let that lapse.
• 
  
• Avoiding sugar except when it comes in natural forms with milk or whole fruit (not juice).
• 
  
• Learning Hebrew to keep my mind sharp.  (I'm not patient enough to do crossword puzzles.)
• 
  
• Getting 7-8 hours of sleep most nights.  I need to raise that to 8-9.

Air Pollution and Dementia

We think of air pollution as a problem that impairs our lungs and our breathing, but there's new evidence that it may also affect our brains and even cause dementia.

See this article "Is there a Connection between Dementia and Dirty Air?" by Casey Kelly-Barton on senioradvisor.com.
https://www.senioradvisor.com/blog/2016/12/is-there-a-connection-between-dementia-and-dirty-air/

One specific culprit may be the magnetite particles found in dirty air.

Increased levels of magnetite have been found in the brains of persons with Alzheimer's disease.

I have a friend who died in 2012 from lung cancer--specifically, non small-cell lung cancer.  Her name was Katherine McTaggart.

She never smoked, so the change in her lung cells had to come from some other irritant, such as the polluted air in West Los Angeles, where we both live.  The 10 freeway starts at the beach and passes a few blocks from her house and from mine as it stretches east toward Texas and finally Florida.

Thus I am sure that the pollution surrounding my community is having effects on me and my friends.

Read the article above to find ways you can deal with particles in the air.  These methods include:

• Avoid the outdoors and exercise on high-pollution days.
• Wear a mask if you do need to go out on these days.
• Use HVAC filters to remove irritants inside your home.

The Happy Side of Dementia

My mother with the chihuahua, Irie, in 2007

Dementia can be caused by several types of events, not just by Alzheimer's Disease.

Lewy Body Disease and Parkinson's are also associated with dementia.

Stroke is another frequent cause of impaired function of the brain, including the frontal temporal lobe, which is part of dementia.

Thank you to NPR this morning for the interview with Christine Hyung-Oak Lee, who had a stroke at age 33.

Her book is called Tell Me Everything You Don't Remember.

http://www.npr.org/sections/health-shots/2017/02/11/514559596/after-a-stroke-at-33-a-writer-relies-on-journals-to-piece-together-her-own-story

In the interview, Christine mentions "Depression is part of recovery from stroke," Christine says in the interview.  "It's grieving for the loss of one's former self."

On the other hand, in the initial stage when she had only 15 minutes of short-term memory, she reported being happy and at peace.

"It's actually quite pleasant," she said.  

That rang true for me.  When my mother was living on the Memory Care floor of an assisted living, I noticed her general calm and contentedness and that of most of the other residents.

She didn't remember that her brother had died a year before, nor that her mother had died twenty years earlier.  She had few expectations or worries.

She was more relaxed and happy than she had been during most of her former life, when she was married to my father, an alcoholic, and was working outside the home while raising four kids.

Of course, irritability is also part of ALZ to varying degrees and at different times of the day.  Waiting for meals or for help is difficult.  

My mother wanted to be at my house, not in a facility, and when I would leave after a two-hour visit, she didn't understand why she couldn't go with me. 

Another positive note: I was encouraged to hear that Christine regained much of her brain function with time.

Voice from the Past -- Still Present

My mother's dear friend Janet Krause sent me a letter.  It's such a joy to hear from her!

She will turn 98 in September.  That reminds me that my mother might still be with us, were it not for the Alzheimer's.  Janet's friends and family will gather to celebrate.  

She writes, "I have trouble remembering names--faces I know."

As I wrote to her:

"You represent my mother Evelyn and so many others.  Because of you they are still with us in some sense.  The times you all lived through together--the Depression and World War II and the 1950s--are more vivid in our memory because they are still in your memory."

Janet and Evelyn were nursing students together at Children's Hospital in Denver in the late 1930s. After the bombing of Pearl Harbor, Evelyn became a Navy nurse and Janet became an Army nurse.

Janet had surgery for breast cancer two years ago--and beat it!  Yay!

She spent a few months with her daughter in Colorado over the winter holidays but then returned to her apartment in an independent living facility in Mitchell, South Dakota.

"I have a collection of 82 hats hanging in my bedroom--all of which I have worn over the years," she writes.  She and her husband LeRoy both liked antiques.

Janet served as an Army nurse during World War II.  

See an article about her amazing experiences in The Daily Republic of Mitchell, SD, August 29, 2006.  Bombs fell around her as she and others waded ashore in France to provide medical care during the Battle of the Bulge.

https://kh057.k12.sd.us/images/World%20War%20II%20-%20B.pdf

My mother would have turned 97 on March 12. Her cousin Walter's wife Aline Pera turned 100 last August. My mother-in-law will turn 94 in September.

May we treasure these living memorials of a time fast fading.  

See also: 
https://en.wikipedia.org/wiki/WAVES

https://en.wikipedia.org/wiki/United_States_Navy_Nurse_Corps

Danger Zone

My mother-in-law, age 93, is happy to be back in her own home after a hospitalization of a couple of weeks followed by nearly six weeks in a rehab place.

But the transition from hospital to rehab or skilled nursing is a danger-filled time, and the transfer to home care is likewise worrisome.  See this article in the Washington Post by Jordan Rau:

https://www.washingtonpost.com/news/to-your-health/wp/2016/04/29/from-hospital-to-home-a-dangerous-transition-for-many-patients/?wpmm=1&wpisrc=nl_evening

Medication errors can occur.  There's no longer a heart monitor or nurses nearby in case of emergency.

Usually the care-giving is transferred from a team to one person doing round-the-clock care and trying to sleep when the patient sleeps.  A tremendous responsibility rests on that one person's shoulders.

It's better if home care can be provided by several aides, each working an 8- or 10-hour shift, with days off each week.  But these things are expensive.  If the person has long-term care health insurance, it can take weeks to activate that policy to fund or partially fund the care.

"Old age is no place for sissies," said Bette Davis (1908-1989).

But my friend Brenda Holguin doesn't like to hear people complain about getting old.  

"Not everyone has that privilege," she notes.