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

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.










Sunday, January 28, 2007

Slowly Dying

It's a small thing: tonight Mom can't remember that she is supposed to take her false teeth out at night.
"It's the first time," says her weekend caregiver, Raquel.
We both know that for over a year now, Mom has been asked to take them out and has complied. For forty years she kept them in all night, just removing them for a half hour per day to soak in Efferdent.
But then one night a year and a half ago she took her partial plate out during the night, put it "under her pillow," and it was never seen again. After much searching, we replaced it and instituted the no-teeth-at-night rule.
"Why don't you just take them out?" I ask Raquel.
"She might bite me," admits Raquel with embarrassment.
"Oh, yes, of course. She probably would bite you," I remember.
In the last few years biting has become one of Mom's avenues of last recourse in defending herself and keeping caregivers at bay.
So I get the Efferdent cup and begin negotiations with Mom to remove the teeth.
"No! I will need them in the morning," Mom argues, but eventually she complies.
Then I floss her remaining eight teeth at the front of her lower jaw and brush them.
When I give her sips of water and ask her to rinse out her teeth, she just swallows the water. She has forgotten how to swish out her mouth and spit after her teeth are brushed.
~ ~ ~
She is having a sleepy day, but she did open her eyes and speak with me immediately when I arrived at 7 pm.
I didn't take her to church today because I was one of two leaders at the Women-Church liturgy in the morning, and I had to visit my daughter in rehab in the afternoon. It would have been hard to do these things while attending Mom in her wheelchair.
~ ~ ~
In the last week or two, the list of things Mom can't remember how to do has been growing.
She doesn't remember:
1) how to participate in her tooth care at night,
2) how to tear off individual sheets of toilet paper and stack them while sitting on the toilet,
3) how to ask for a tissue to blow her nose,
4) how to replace her foot on the foot support of her wheelchair if it falls off,
5) how to listen to the television and make sense of it.

For about two years she has not known how to dial a phone number.
She can't do two things at the same time--like eat and watch I Love Lucy, which used to be her delight.
She no longer asks for water to be run at the sink while she is on the toilet.
She no longer insists on two napkins at meals, one at her neck and one in her lap.
She doesn't interact with most of her possessions: the dolls in her glass cabinet, the jewelry on her bureau, the photos on her walls. I don't think she sees these things any more.
She hasn't talked about going to Colorado for six months or more.

When I bring her to my house, she asks to leave in about ten minutes. I put the wheelchair at her end of the kitchen table, make cinnamon raisin bread toast, serve it to her with milk, and as soon as she finishes it, she says, "I'd better go back now."

If I take her to Denny's and we order a meal, she immediately asks where her food is.
"It's not ready yet," I argue, but she feels it should arrive while the waiter is walking toward the kitchen.
~ ~ ~
Lately she has had more sleepy days, two or occasionally three per week. On really bad days, she is too sleepy to eat. She just sits at the table slumped forward.
Tonight she was sleepy and didn't eat much, reports Racquel, who managed to get her to eat a little bit.
Last week she didn't eat all day on Saturday, though I spent 45 minutes trying to get her to sip Ensure and to eat some pasta with seafood.
~ ~ ~
Tonight it all adds up: she is dying. Not dramatically, as with a stroke or pneumonia, but inch by inch, with excruciating slowness.
Item by item, she is losing her ability to do things and remember things.
"Time for a nursing home," I realize suddenly. "What she needs increasingly is just nursing care."
Yet she is still in the fancy assisted-living residence I chose to keep her happy and enhance her self-esteem. For a while it made sense for her to be in a beautifully decorated place with an elegant dining room and all of her own furniture in her private room.
But now she sees less and less of her surroundings. She has tunnel vision that extends to only a few feet around her.
It's time to give up the elegant residence and the eight-hours-per-day of private caregivers.
She is close to her 88th birthday, and I expect she will not live to see her 89th.
The caregivers and executive director of her residence want me to keep her there until she dies, paying for private caregivers around the clock when that level of care becomes needed again.
Two factors dictate a no to this plan:
1) the $7,000 per month needed to keep her there, and
2) the lack of a workable plan for evacuation of the residents on her floor in the case of a fire or earthquake. Just last month she was injured by falling when there was a small fire on the first floor.
~ ~ ~
I leave the building in tears tonight as I reflect on the shortness of her remaining days. I've been in denial, I think.
She is withdrawing from the world, but I'm still treating her like the person she was two years ago, who enjoyed her surroundings, was proud of being an author, and demanded to go Colorado in the summer.
She is methodically dying, but I am struggling to keep her eating and involved in activities.
I wonder how I will find the time to select a skilled nursing facility and move her there.
I also realize with relief that my complex life of caring for her while interacting with three daughters ages 19 to 24 will not last forever.
Perhaps when 2007 ends my middle daughter will be in recovery from cocaine addiction and my mother will have moved on to her final rest.

Note on April 7, 2017:  My mother died on April 9, 2008, at age 89.  My daughter has almost ten years of being clean and sober and is now a therapist helping others to recover from addiction.