Monday, April 10, 2017

Stages of dying



Dying

Give up beauty.

Give up pride.

Give up walking.

Give up swallowing.

Give up calendars.

Give up memory.

Give up modesty.

Give up life.



Living

Behold beauty.

Dwell in God's presence.

Embrace today.

Seek God's face.

These you will never lose. 

-- Psalm 27:4





Sunday, April 09, 2017

Holy Week, Holy Passing

My mother Evelyn and I in 2007

Today marks nine years since my mother died of Alzheimer's Disease.

This year the day falls on Palm Sunday, the day when Jesus returns to Jerusalem and the confrontations begin that will lead to his death.

This year my friend Kathleen is dying from cancer that began in her uterus and had metastasized to her lungs when discovered in June 2015.

I spent eight hours with her yesterday, from 11 am to 7 pm.  She's been in and out of the hospital since early February.  Her last hospitalization was toward the end of March, followed by a week in skilled nursing.

On March 30 she returned to an assisted living facility, Claremont Manor, and finally agreed to go on hospice.  Yesterday was her ninth day of hospice, and it's clear she only has a few days left to live.

Yesterday was also her birthday.  She turned 77.

How do you wish someone happy birthday as she dies?  It's difficult, but some 12-15 friends stopped by.  She was able to talk with them and enjoy their company briefly, but each visit was also tiring.

I just sat quietly in a chair at her bedside, leaving the room when she had visitors, getting things for her when she asked, listening when she spoke.

She monitored the oxygenation of her blood with a fingertip pulse oximeter.  Her oxygenation stayed around 90% except when she coughed and had to remove the oxygen tube from her nose.  When the pressure was set at 5, she felt a cold wind blowing past her ears.  Her caregiver would not turn the level down without permission from a nurse or doctor, so Kathleen asked me to turn it down to 3, sneakily, and I did.  Later her friend Margaret got the permission from one of her doctors.

We also figured out that where the tube splits into two, one for each nostril, it's important that the ends be pointing up, not down into the bottom of her nose.

Kathleen herself is a cardiologist.  Her heart beat was running about 112 beats per minute, according to the oximeter.  I expressed concern about that, but she waved it away, only following the oxygenation reports.

I realized that her heart was pumping so hard, trying to get oxygen and send it around through her blood.  It was the heart rate of an athlete exercising, running fast.  I knew the heart couldn't keep that up for day after day.

Kathleen had drunk a cup of tomato soup from Trader Joe's that morning.  She sipped water occasionally throughout the day.  When I suggested water, she was grateful, telling me that she forgets to drink.

"Remind me," she said.  I did.  She drank over half a cup of water during the time I was there, but I knew it wasn't enough.  She can't eat solid food or even pureed food.  It's difficult for her to swallow.  I didn't ask her why lung cancer would take away her ability to swallow.  She's also given up milk shakes and Ensure because they have milk in them, which causes congestion in her throat and lungs.

I realized that she's essentially fasting.  A body can't keep functioning without food for long, not when you have fourth-stage cancer and are barely drinking any liquid.  

When I was with her two weeks earlier, she said, "I'm on the way out."

"I'm so sorry," I said.

"It is what it is," she replied.  She says that at least once a day.

Yesterday when she said it, I replied, "But it's not good."

"It's interesting," she said, ever the doctor with a curious mind.

After some other guests had gone, she said, "Don't leave."

A doctor friend sent a birthday gift: fancy ocean-scented lotion and hand soap.  I opened it for her and showed them to her.  I helped her to text a thank you to the doctor.  Her fingers were barely warm enough to send a message when she tapped a letter.  Even knowing how to get names and phone numbers and change screens was becoming hard for her.

"Would you like lotion on your hands?" I asked.

I smoothed it on her long fingers and palm, then on the length of her arm.  I noticed her light brown skin had turned a bit jaundiced.  She only had one functioning kidney, and it was maybe shutting down.

"My skin is so dry," she said.

Later I realized we had enacted the scene where Mary in the Gospel of John, chapter 12, anoints Jesus's feet with costly nard.  "That's for the day of my burial," Jesus said, knowing that he was likely to be arrested and executed.

Light in the room was dimming at sunset.

"The day is so long," Kathleen said.  "And the nights are longer."

"That sounds like what Woody Allen said," I commented.  "'Eternity is so long, especially toward the end.'"  But I immediately wished I hadn't said it.  She was thoughtful, looking eternity in the face.

The whole day reminded me of my mother's death: her not being able to swallow or even drink toward the end, me postponing hospice until she had less than two weeks left-- but we never know how close to the end we are.

Kathleen (right) with Ivone Gebara
I thought my mother would live a week or two longer, so on a Tuesday I didn't visit her until the evening and then only briefly.  She died Wednesday morning, April 9.  Had I known, I would not have gone to teach my class and hold office hours that Tuesday.

I was also thinking of Pat Reif, who died on Palm Sunday of 2002.  I had spent time with her just before she left this earth, too early, with pancreatic cancer.  She was a nun, scholar, anti-war activist, feminist, with doctoral degrees in both philosophy and theology.

Like Kathleen, she had done much good in her life.  Both she and now Kathleen would die during  Holy Week.

At 7 pm I said goodbye to Kathleen.  "I'll come back Thursday," I said, thinking she might not make it to Saturday.  Maundy Thursday or Good Friday--fitting times for a near-saint to leave.

"Thank you for coming," she said.










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