Showing posts with label Alzheimer's Disease. Show all posts
Showing posts with label Alzheimer's Disease. Show all posts

Saturday, February 21, 2026

"Dementia friendly" music

 


"Dementia friendly"--what does that mean?

On YouTube I found a video of a well-known Christian hymn that says it is dementia friendly.

Listen to: Jesus Calls Us, O'er the Tumult

It's produced by a ministry called Spiritual Eldercare. Their mission is "Ministering to older adults with Alzheimer's and other dementias."

They define "dementia friendly" as 

"Sing-along hymns specially arranged for elders with Alzheimer's and other dementias (shorter, slower, and in a lower key)."

Two things are beautiful about this ministry:

1) that some Christians value those who are warehoused in "memory care" wards and consider their spiritual needs.

2) that they have found ways to modify hymns and to reach them.

Music is one way to reach people whose minds are failing. I know this from my years of accompanying my mother through her Alzheimer's.

When you slow the music down and make the lyrics shorter and more understandable, you are throwing a life preserver out to a person who could sink under the water.


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.  

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/

Tuesday, March 12, 2019

100 years since Evelyn was born...

Evelyn in about 1943

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Evelyn Frances, about six years old

















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


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


Kermit Eggebroten, Evelyn, and their first child, Anne



Monday, April 09, 2018

Reflections: 10 years ago...

Evelyn Frances Gustafson Eggebroten with Irie in 2007
Ten years ago today my mother died.  

She would have been 99 years old now, if she had lived.

She died quietly, peacefully, with my sister and I holding her hands.  

That day and the next few days were very stressful as my sister and I went to the mortuary to make decisions and sign papers, cleaned out her room at Sunrise Assisted Living, and arranged plans for her memorial service.  

But she is at peace.  

I am grateful not to have had continued responsibility for her care over the last ten years.  There were so many doctor visits, care decisions, arguments, and sad moments....


I don't miss her now as much as I did at first.  There is so much else to think about--my kids, my own health, my writing, travel, and politics during this terrible era post-November, 2016.

I haven't gone through her twenty boxes of papers and photos and mementos--they still sit mostly untouched.   I need to do that, but I have postponed it in favor of gardening, cooking, cleaning, reading, blogging, classes, travel, and political demonstrations--in a word, my own life.  Also I was still teaching through June, 2015.

I feel sad when I think of my mother.  There are things I couldn't tell her if she were here. 

There are things she couldn't do because of being wheel-chair bound and being incontinent.  She would want to be fully part of my life and my kids' lives... but it wouldn't be possible.

I love her.  I feel so much compassion for her--she tried so hard, she had so much gumption.  

  • She got out of her small town, Telluride, Colorado. Some didn't.
  • She became an R.N. and served in the Women's Army Corps in World War II.
  • She married and raised four kids.
  • She earned a Master's degree in public health nursing while I was in fifth and sixth grades, writing a thesis on visiting nursing of people with tuberculosis.
  • She taught at Bakersfield Junior College and the University of Maryland.
  • She volunteered with the Red Cross, Meals on Wheels, and visited senior care facilities in Boulder to evaluate them.
  • She completed an autobiography--with my help.
  • She survived two broken hips, ten years apart, as well as multiple embolisms in her fifties.
  • She loved her grandchildren, visiting them and smocking dresses and shirts for them.
  • She cared for her elderly parents.
  • She joined PEO and the DAR in her sixties and seventies.
  • She even took part in a women's circle at church.
  • She cared for her husband until he died at 79, when she was 74.

When I was in my twenties and thirties, and she was in her fifties and sixties, I thought she was so old.  Now I am turning 70 this summer and don't feel a bit old!  I have so many things I want to do before I die--mainly write and travel.

I'm acutely aware of how short my remaining years are.

She was diagnosed with dementia at about 80 years of age... and I'm close to 70.  So I probably have about ten good years at most to do the things I want to do.  That feels short.  I'd rather have twenty good years of reading, writing, traveling, sorting and giving away my belongings.  

Unlike her, I have had breast cancer nearly four years ago and I have atrial fibrillation.

Like her, I am now on a blood thinner.  That's scary--I can't fall and hit my head, but I love to be alone in the mountains hiking.

I just finished reading Being Mortal by Atul Gawande--a powerful experience.  I read it slowly, thoughtfully.

"What makes life worth living when we are old and frail and unable to care for ourselves?" he asks on page 92.

Mom holding up a string of holly with berries, Christmas 2007
Self-actualization, he says, using Maslow's hierarchy of needs.  Those needs change as we age.

By the end of the book, he is discussing "palliative care"--a new term meaning care that focuses on making the most of each day rather than on curing us.  

People still want "the chance to shape one's story," he says, to have some autonomy and control (p. 243).  And to avoid suffering.  






Saturday, December 30, 2017

Atul Gawande on Care of Elderly Persons


My mother at Christmas 2007 (her last)

I am deeply moved by Atul Gawande's account of the changes in our brains and bodies as we age--if we are fortunate enough to age.

Many changes occur whether or not we acquire dementia as a result of a stroke or because of Alzheimer's Disease.

In Chapter 2 "Things Fall Apart," Dr. Gawande discusses the process of aging.

Here are some gems from his account:

**  "Remember that for most of our hundred-thousand year existence--all but the past couple hundred years--the average life span of human beings has been thirty years or less" (p. 32).

**  "Our bodies accumulate lipofuscin and oxygen free-radical damage and random DNA mutations and numerous other microcellular problems.  The process is gradual and unrelenting" (p. 35).

**  "Even our brains shrink: at the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room...  The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized... By age eight-five, working memory and judgment are sufficiently impaired that 40 % of us have textbook dementia" (p. 31).

**  "In 1950 children under the age of five were 11% of the US population... those over 80 were 1%....  In thirty years, there will be as many people over eighty as there are under five" (p. 35-36).

**  "...a lot of doctors don't like taking care of the elderly" (p. 36).

**  "The single most serious threat [is]... falling.  Each year, about 350,000 Americans fall and break a hip.  Of those, 40% end up in a nursing home, and 20% are never able to walk again" (p. 40).

     Falling and breaking a hip was my mother's experience twice.  After her second fall at age 85, she had to be in a wheel chair.  Rehab with a walker was not successful.  

** Coughing when drinking water or eating occurs when "lordosis of your spine tips your head forward... Try to swallow while looking up: you'll choke once in a while" (p. 51).

     For my mother, coughing became a big problem in her last few months.  In the last few weeks, she couldn't drink water.  This was partly caused by ALZ-- the inability of her brain to control her swallowing muscles.

Because I will be turning 70 in 2018, I am thinking about aging and mortality.  This book by Gawande, a surgeon in Boston, is a road map for all of us who care for elderly relatives or are in our 60s or 70s or 80s ourselves. 

A year ago I was reading When Breath Becomes Air by Paul Kalanathi, who deeply respected this book by Gawande, but not until this week did I begin Being Mortal.




Friday, April 07, 2017

Hip Replacement--or not?

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

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

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

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

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



Tuesday, March 28, 2017

Inheriting early-onset ALZ


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

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

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



Friday, March 24, 2017

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.”

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. 

Wednesday, March 15, 2017

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





Sunday, March 12, 2017

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.



Saturday, February 11, 2017

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.


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.

Sunday, May 15, 2016

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


Saturday, April 02, 2016

End-of-Life Choices

Should someone who has Alzheimer's--especially the early-onset kind--have the right to end his or her life before it gets to the point of being placed in a Memory Care floor with assistance for daily life tasks such as bathing and dressing or even eating?

The prospect of wearing Depends and needing personal assistance is humiliating.

How can we respond when a friend or loved one expresses a wish to die before this point?  

No one wants a long period of wasting away.  On the other hand, no one wants to die in a car accident or plane crash.  Ordinarily we don't get a lot of choice in how or when our life ends.

Nevertheless, I want to affirm someone who expresses the wish to avoid long-term care, possibly when unable to recognize friends and family.  It's important to share our feelings with friends and family and to cry out to God.

In a post on December 6, 2014, I rather flippantly said "Why bother to make such wishes?  The bottom line is that we don't get to choose when to clock out... unless we oppose both law and custom."

I'd like to say now that I respect the decision to end life through physician-assisted suicide in a case of terminal illness, even Alzheimer's.

There needs to be a way to express this wish on paper, legally, before one gets to the point where one's decisions are impaired by dementia and one is seen as not competent to make this choice.

On the other hand, treatments to halt and even reverse impairment with Alzheimer's are already being tested.  See the February 11, 2016, issue of Time Magazine with this cover story by Alice Park:


I have a friend who has said he would shoot himself first if he were on the verge of being put on an Alzheimer's care.  Is it a blessing that he has since had two strokes and one ablation surgery for atrial fibrillation?  Despite having one parent who died of Alzheimer's, it looks as if he is not headed for a Memory Care floor--unless by stroke.  


To: aeggebroten@msn.com
Hi Anne.

Your Dec 6, 2014 post ends by saying:

As for Ekekiel Emanuel's essay about preferring to die at 75 yrs. rather than waste away later, why bother to make such wishes?   
The bottom line is that we don't get to choose when to clock out... unless we oppose both law and custom. 
 
 
As a Biblical Feminists do we not both oppose law (in the past) and custom (always)???

So why do you say "why bother" re:  Ekekiel's preference to die at 75 and let custom and law prevail in his case?

This is too personal for me.  It is entirely possible that I will not know you at 75. Or maybe I will have the good fortune re: my cognitive impairment and it will level off at some point before it gets too bad.

Monday, February 22, 2016

New Treatments for Alzheimer's

Researchers are testing treatments for Alzheimer's Disease that may be able to reverse the symptoms, not only arrest them.

Thank you to Alice Park and Time Magazine for this cover-story article on the progress being made.  With four related articles, the entire February 22, 2016, edition of Time is titled "The Longevity Issue."


It's "sticky, insidious plaques of amyloid" that are the main feature in the brain identifying Alzheimer's Disease (AD).  

Not everyone who has these plaques develops the disease.  

A new drug, LM11A-31, helps to keep the brain cells of mice stronger and counteract AD.  This drug is in Phase II of testing for use with humans and being approved by the Food and Drug Administration.

The article's accompanying charts and boxed sidebars are great too, so go to a library and look through an actual paper copy of the magazine.

The related articles are:
  • "The new age of aging" by Laura L. Carstensen.
  • "Lessons from long-lived animals" by Alexandra Sifferlin
  • "Eat better, move more, stay positive" by Alexandra Sifferlin
  • "How to afford an extended old age" by Dan Kadlec
Money spent on research is valuable not only to individual persons but to society as a whole: By 2019 the global cost of Alzheimer's care could reach $1 trillion.






Saturday, January 30, 2016

Young Blood

It turns out that blood from young people can bring new function to brains beset by Alzheimer's.

After the factors in blood that rejuvenate are isolated, these products can be used instead of blood itself.

Eventually, the needed proteins can be manufactured.

Thank you to my friend Diane for bringing this to my attention.

http://www.braininjurysupport.org/young-blood-rejuvenates-cells/


Thursday, May 29, 2014

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