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.

Gracious Aging

Living into the 90s and experiencing ups and downs as health declines and fails is quite a trial.

I'd like to report, however, that I have one friend who is negotiating these ups and downs with relative good cheer.  

She's 99% ready to leave this earth but also very patient with the day-to-day indignities.  I'm amazed that she is not angry or sad.

Most younger people look at the problems of extreme old age and hope their lives will end earlier.

Perhaps because I spent four years accompanying my mother on this journey, I myself view being in an assisted living residence with equanimity.  It's a peaceful life surrounded by others without the kinds of worries and pressures that plague earlier years.  (A skilled nursing facility, on the other hand, is not good news.  It's more of a warehouse where people are pieces of meat, showered roughly, wheeled in and out of meals whether or not their false teeth may be in their mouths.)

What seems unendurable today--such as wearing Depends--can become just another event later if one lives in a cheerful place with kind caregivers.

When I was in my twenties, in the 1970s, I was close to my grandmother and observed her dealing with cataract surgery.  It seemed awful to me to have a surgeon cutting into one's eyes.

Today my perspective has changed.  I'm 67 and starting to feel the effects of growing old.

I didn't feel old when I got my Medicare card, or when I started collecting Social Security or began noticing increasing wrinkles and gray hair.   

Yesterday, however, when I sat in my ophthalmologist's office and scheduled a cataract surgery, it happened.  I'm where my grandmother was, and now I know I am old.

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:

http://time.com/4217067/alzheimers-from-a-new-angle/

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.  

Actions 

Diane Steelsmith

 

 

9:05 AM

 

 EEWC Friends

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.

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."

http://time.com/4217067/alzheimers-from-a-new-angle/

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.

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/

As They Lay Dying...

Thank you to Dylan Landis for this sensitive report on how difficult it is to watch your parents die.

http://mobile.nytimes.com/2015/08/30/books/review/closing-the-book.html?referrer=&_r=0

Ordinarily Dylan spends much time writing and reading books, but during the summer and fall of her parents' death and for nearly a year afterward, she could do neither.  

We often think of reading as an escape, a way of passing time when we can't do other things.  

But Dylan found her mind too preoccupied to get into a book.

This time, I found myself staring out the train windows, book in lap, unread.

And when my parents napped, instead of curling into the guest chair to read, I daughtered, picking up Kleenex blossoms, straightening papers and updating their friends. I opened books, listlessly closed them and talked to the aides about their boyfriends, their money and, with some of them, God.

I love her use of the word daughter as a verb-- to daughter!

I find myself infinitely distractable with daughtering, housekeeping, shopping, errand-running... It's so hard to pick up a book and stay in one chair, ignoring all the other demands on my life.

** Dylan Landis is the author of a ­novel, “Rainey Royal,” and a story collection, “Normal People Don’t Live Like This.”

Another kind of dementia

John Carroll is the renowned former editor of the Los Angeles Times and the Baltimore Sun.   The Times earned 13 Pulitzer prizes during his 5-year tenusre.  He's a brilliant and kind man.

http://en.wikipedia.org/wiki/John_Carroll_%28journalist%29

He has been diagnosed with a rare form of dementia, Creutzfeldt-Jakob disease.

http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm

There are only about 300 cases of this disease per year in the US.  It's very fast-moving.

Here's what the NIS says about the disease:

CJD belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies (TSEs). Spongiform refers to the characteristic appearance of infected brains, which become filled with holes until they resemble sponges under a microscope.

One form of the TSEs is mad cow disease.

If you have a relative are struggling with Alzheimer's disease, remember that there are worse fates.  One of them is Creutzfeldt-Jakob disease.

Robin Williams & LBD

One of the sadder aspects of dementia is that it can lead to suicide.

My mother tried to leave her assisted living residence and "get hit by a truck" with her walker.

It's not surprising that Lewy Body Dementia was probably a factor in Robin Williams taking his own life.

http://www.salon.com/2014/11/13/autopsy_robin_williams_had_lewy_body_dementia/?utm_source=facebook&utm_medium=socialflow

With a healthy frontal cortex, people would have more chance of getting help rather than letting the illness and impulses of a moment end their lives.

Thank you to Juanita Wright Potter for alerting me to this post on Salon.com.  

Either Laugh or Cry

Roz Chast, staff cartoonist for The New Yorker, has a new book out on care of her elderly parents.

http://www.amazon.com/Cant-Talk-about-Something-Pleasant/dp/1608198065/ref=cm_wl_huc_item

I haven't read it yet, but it's probably a great gift for anyone involved in elder care.

It was a finalist for the 2014 National Book Award, as well as a #1 NYT bestseller and one of the top 100 books chosen by Amazon's editors.

Here's a quote from them:

the themes are universal: adult children accepting a parental role; aging and unstable parents leaving a family home for an institution; dealing with uncomfortable physical intimacies; managing logistics; and hiring strangers to provide the most personal care.

Older and More Joyful

My friend Sharon Billings and I are closely tracking the event of aging and its effects on our lives and the lives of our friends.

I thank her for pointing out David Brooks' essay in the New York Times this week about the emotional effects of aging:

http://www.nytimes.com/2014/12/05/opinion/david-brooks-why-elders-smile.html?rref=collection%2Fcolumn%2Fdavid-brooks

He confirms what I have long suspected: old age can be a time of greater happiness, even in the presence of health issues and other losses.

I noticed how happy my mother was in her last several years--not all the time, but on the whole.  She had to live in assisted living, but it was a comfortable and warm environment with great caregivers.  She didn't spend any time focusing on the large home she had sold a few years earlier.  

When she came to my house on Sundays and holidays, she often said she wanted to stay and spend the night, but she accepted the reality that it was easier to return and sleep at Sunrise Assisted Living.  

There was a sharpness in her face during her fifties and sixties, when she was still ambitious, hard-working, tired and anxious.  That vanished in her eighties.

Brooks points to well-researched changes in the brain as the source of this happiness and relaxation: greater focus on the present, less worry about the future.  

He doesn't address worry about death--how and when it will happen, whether it will be painful.

"I'd like to think that people get steadily better at handling life's challenges," Brooks writes.  Really?  That sounds like Emile Coue's mantra,  "Every day in every way I'm getting better and better."  Sheer fantasy--though positive thinking does have beneficial effects.

Brooks lists four changes that really do happen in many older people:

1) Bifocalism--the ability to see a situation from multiple perspectives;
2) Lightness--the ability to be at ease with disappointments and loss, realizing it's not the end of the world;
3) Balance--the ability to meet competing demands in a given situation, such as being honest but kind;
4) Empathy and pattern awareness--what Brooks calls "an intuitive awareness of the landscape of reality."

For each of these changes he cites a book or research study.

I like his discussion of bifocalism, especially the ability to be detached while at the same time compassionate:

"Only with experience can a person learn to see a fraught situation both close up, with emotional intensity, and far away, with detached perspective," he writes.

This dual focus reminds me of T.S. Eliot's poem "Ash Wednesday":  "Teach us to care and not to care."

Persons with dementia may not achieve all these four skills, but they are really good at being "in the moment."  Sometimes the moment is all they have; this was true for many of the residents on the memory-care floor where my mother lived.

I'm pretty content with the possibility of ending my life in a blissful fog while others care for me, making sure I am eating, sleeping, and being diapered. 

My mother did have frustrations and outbreaks such as smashing a glass of water on the dining room table, but five minutes later when I arrived she was cordial and happy to see me.  

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.

Outside for Alive Inside

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Reflections: 6 years

My mother's life ended six years ago today.

Evelyn with Anne - passport photo, March 1950

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

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

May we all be so fortunate.

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

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

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

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

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

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

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

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

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

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

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

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

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