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

How's your CRP?

My brother Bill, the doctor, tells me that the drugs they gave Mom ten years ago for dementia were worthless.

Now a blood test can determine whether you have elevated levels of a certain protein, CRP.

Apparently the liver produces more of this as we age (especially if you have the wrong genes), and too much of this protein causes inflammation of blood vessels in the brain and elsewhere.

Inflammation is one cause of the production of the placque that causes Alzheimer's Disease.

There are now medications to lower the production of this C-reactive protein.

Of course, exercise and low intake of carbohydrates and sugar are also good.

http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html

Make sure you are tested for the levels of CRP in your blood--and if you do, start doing things to lower your level.

Evelyn Frances--born 95 years ago

Mother would have turned 95 today if she were still living.  

My mother and I with my sister-in-law and her two daughters

March 12, 1919, is a date I will never forget.  I filled it into forms so many times while handling her medical care and business.

She lived a full life: childhood in a little mining town in Colorado, college in Boulder in 1936-37, two years in Denver earning her RN at Children's Hospital, service as a Navy nurse in World War II, marriage, raising four children, teaching public health nursing at a two-year college and at the University of Maryland, enjoying 14 grandchildren, volunteer work in retirement, and finally residence on the memory care floor of Sunrise Assisted Living.

She didn't like the limitations of old age.  Her fiercely independent spirit chafed against having someone else dispense her medications and tell her when to go to bed or show up at meals.

In 2005 she even tried to push her walker down a stairway and out into a busy street so she would be hit by a truck.  Of course it didn't work, but the event was her attempt to die without further indignities.

She lived on four more years, a time that included wearing Depends, being showered by caregivers, and having her Depends changed at night by men she didn't know with skins of brown and black.

Pneumonia was what finally took her father's life when he was aged.  In 1976 she had said that nurses called this illness "the angel of mercy" because it gave a swift and gentle exit to a person who was ready to die.

She was not so lucky, however.  Her life ended by starvation and dehydration.  

There came a time when her throat muscles no longer knew how to swallow because of the damage done to her brain by the plaque deposits of Alzheimer's Disease.  Her children decided not to start a feeding tube of pureed food into her stomach.  We felt that her quality of life had deteriorated far enough without doing that.

On her birthday in 2008 I took her to lunch at Carrow's Restaurant near my house.  She ordered fried shrimp, which she could not eat.  Mashed potatoes and applesauce went down well.  She drank milk.  

She wanted rhubarb pie, a food rarely found on a restaurant menu today.  Her grandmother had made that pie, and she had occasionally stewed rhubarb for us.

Today the amaryllids are blooming at my front door, as they were five years ago during her last month of life and in the week of her memorial service.  

It's like the poem "When Lilacs Last in the Dooryard Bloomed" by Walt Whitman, remembering the death of Abraham Lincoln.

Every year the perennials return in full bloom, reminding survivors of the one they lost in a previous spring.

We are mortal, but the little flowers live on.

Laugh or Cry!

You can either laugh or cry about Alzheimer's.

I laughed all the way through Nebraska, the 2013 comedy about an older man trying to collect his prize after he receives a letter telling him in large, bold print that he has won a million dollars.

Of course, he is told that there's an "if" in small print, but he still believes he is a winner.

http://www.fool.com/investing/general/2014/03/02/how-alexander-paynes-nebraska-is-a-game-changer.aspx

I went through this with my mother when she got repeated mailings from Reader's Digest Sweepstakes telling her that she was a winner.

Just like the son in Nebraska, I tried to convince Mom that she was still a few stages away from winning a big jackpot, but she persisted in thinking her doorbell was going to ring and she was going to fly to Plainsville, New York, to claim her prize.

She had her suitcase packed and would call me to discuss which outfit she should wear when the big day came.  

Bruce Dern does an excellent job of playing the confused but lovable old man, Woody.

Will Forte from Saturday Night Live portrayed Woody's younger son David, a salesman of audio/video electronics, who finally decides to drive his father to Lincoln, Nebraska, to let him walk into the magazine office and discover he has not won.

The roadtrip with his father is hilarious, from the losing-false-teeth episode to peeing on the side of the road to visiting Mt. Rushmore.  I've done so many of those trips with my mother that it was fun to see the humor captured on the big screen.

Reacting to his father's antics, David's emotions range from frustration to grim persistence to moments of sheer love.  I was with him 100%: been there, done that.

Director Alexander Payne also did a great job presenting the dysfunctional family around these two: David's mother, brother, aunts, uncles, and cousins.  If you liked the crazy but true-to-life family in The Descendants, also directed by Payne, you'll love these folks.  

Some people don't like this film.  Its subject is too scary.  After all, if your parent has Alzheimer's, you have a good chance of getting it too.

But hey, the situations that arise are genuinely funny.  It's your choice, to laugh or cry.

I choose to embrace our common destiny and laugh.  

As Rashi said, "Accept with simplicity whatever comes to you."

(This quotation appears at the beginning of another funny/sad film, A Serious Man, directed by the Coen brothers in 2009.)

http://www.latimes.com/entertainment/envelope/moviesnow/la-et-mn-screenwriting-guru-robert-mckee-oscar-contenders-20140226,0,240582.story#axzz2usnDdKTc

http://dearcinema.com/review/nebraska-best-picture-will-get-oscar/4951

http://www.rogerebert.com/reviews/a-serious-man-2009

Deja Vue

I have two dear friends in their 80s who live together, friends for a long time.

Lucy has been diagnosed with dementia and requires assistance with daily tasks.  Greta is her caregiver.  

I visited them today, and it was like watching myself with my mother in 2007. 

Lucy recognized me and was gracious and gentle, as usual.  She loves flowers and is devoted to her garden. 

A nurse was there for her daily visit, wrapping Lucy's elbow, injured in a fall and slow to heal.

There was also a jigsaw puzzle, just completed, on the dining room table, part of Lucy's mental exercises.

After the nurse left, Greta asked if Lucy needed to use the restroom and then assisted her as she stood and used her walker to get there.

After ten minutes, nothing had happened, so Greta had to decide whether to bring Lucy back to the living room.  

I remembered times when I would wheel my mother to the toilet, turn on water at the sink, and wait.  She had no control over her bowels, so I would often end up taking her back to her chair with no results.

Then, of course, after the movement of getting up and down from the chair and the toilet, she would announce that she needed to urinate.  

I would get so impatient: "No!  You can only go to the bathroom once per hour, Mom."

Now if I'm drinking lots of fluids and make two visits to the toilet within less than an hour, I wish I had been more accommodating.  

Feeling guilty over not doing more is one ever-present aspect of care-giving.  Where do we draw a boundary that allows for self-care as well as attention to the needs of another?

Greta gave Lucy a bit of Metamusil and explained to me that she had forgotten to give Lucy her evening laxative the night before.

"Can you help me get it out?" asked Lucy.

I remembered my aunt, who has a daily visit from a nurse to dig the waste from her bowel.

Ah, the trials we never imagine we might face.