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.

Saturday, January 27, 2007

Full Speed Ahead

Mom's brain was working at top speed today, skittering off in many directions.
I brought her to my house at about 1 pm to eat a snack and talk with my youngest daughter while the dog ran around them.
Here are some samples of the conversation.

"It must be kind of crowded in heaven," Mom says.
"No, I think there's a lot of space there," says Marie. "Unlimited access, like the internet."
"Interesting idea, Marie," I interject.
""I think it's very true," she continues. "Heaven is like the internet. If I make a website and my computer crashes, the website still exists."
"I don't think I can send you letters when I go there," Mom comments.
"Well, I guess not," says Marie kindly. "I think you can talk to us, though, whenever you want to. We'll just hear you in our minds, like the way animals and humans understand each other."
"Do you know Page 141? I make everyone memorize it," Mom continues.
"No, what is it?" Marie asks.
"Page 141: The Lord is my shepherd. I shall not want. He leadeth me beside the still waters. He telleth me where to go and what to do and what to do about it...."
"Oh!" Marie and I chorus.
~ ~ ~
"I need a Kleenex," says Mom, fishing in her purse as she sits at the table.
For some reason I am not listening to her; I don't jump up to set a box of tissues in front of her.
Suddenly she says, "There! I wiped my nose on the P.E.O. Sisterhood."
"No, you didn't!" I cry in horror, turning to her.
Indeed she is holding her small lavender P.E.O. booklet of names, addresses, and upcoming events. There is a dark brown smudge on the cover.
"Why did you do that?" I ask.
"Why? It needed to be done," she comments blankly. "Sacrilege, huh?"
~ ~ ~
As I drive her back to her residence, Mom is talking about my brother Jim's wedding again. She was talking about it yesterday. Perhaps her caregiver put the videotape of the wedding into her television.
"Jim cried as he slit the penis/vaginal opening," she says.
"What--why?!" I comment numbly, wondering what on earth brought this up.
"Because he didn't want to hurt her," Mom says. "I don't know why that was part of the wedding. I didn't think that was appropriate at all."
~ ~ ~
Now she is worried about some problem she will find in her room when we get back there.
"I'll have to get down on my hands and knees to crawl to the box," she says.
"What box?" I ask.
"That big case of diapers," she says.
"There's no case of diapers in your sitting room," I say firmly. The rest of today's conversation may have been insane, but here I am on solid ground. "It would not be a good idea for you to get on your knees and crawl to anything. Your Depends are in your bathroom, two packs of them, each pack in a plastic wrapper."
"No, they're in my room in a box," she says. "You'll see when we get there."
I give up.
Conversation is just not possible.

Saturday, January 20, 2007

Dementia and _______?

Let's face it, most of us are not doing just dementia.
We are doing dementia and a full-time job, or dementia and the rearing of teenagers, or dementia and two or three volunteer services in the community, or dementia and all of the above.
Very few of us have the luxury of doing just the care and management of a person with dementia.
Since December 20, when one of my daughters went into rehab, I have been doing Lewy Body Dementia and bulimia and cocaine addiction.
First of all, there's just doing the learning and research on these particular illnesses.
Then there are the issues of where to get the best care: finding doctors, therapists, residential living centers--and getting my mother and daughter to these places and appointments.
Then the's the job of figuring out how to pay for it all.
And of course there's the need to visit my mother and my daughter, give them support and encouragement.
Finally, there's the need to care for myself--to find support and encouragement for me.
Oh, and also there are the daily ups and downs of these illnesses--every decision made yesterday will be changed today if my mother falls and breaks a bone or my daughter relapses.
And one more caveat: caretaking can itself be addictive, according to Al-Anon and other sources.
In other words, my mother and my daughter are my cocaine. It's only too easy for me to get all wound up in care of them and forget to meet my own needs.
Today's reading from The Language of Letting Go by Melody Beattie ends with this resolution:
Today, I will pay attention to what I want and need. I will not discount myself.
That's great--but I got three phone calls from my mother's caregivers today, and one from her physical therapist, all expressing concerns about her and demanding my immediate attention.
She didn't eat any of her meals today, and she spit out her medications.
Meanwhile, I have a three-hour meeting for my work, a luncheon date with my youngest daughter, a long phone call from my daughter in rehab, and a dinner date with my husband.
Somebody tell me how in the midst of these conflicting demands I am going to "pay attention to what I want and need."

"Life Is No Abyss"

It's Saturday night, and that means Lawrence Welk.
Tonight the rerun played happened to be from the 1950s, in black & white, when Lawrence was fairly young.
One of the featured soloists sang an old favorite:
Remember this--life is no abyss.
Somewhere there's a bluebird of happiness.
Somewhere, but not in the Reminiscence Neighborhood.
Rose fell and injured herself, Dorothy is bellowing wordlessly, and Sue is telling her to shut up.
Meanwhile, my mother, Evelyn, did not eat any of her meals today and refused her medications. Basically, she had a sleepy day, which is common with Lewy Body, especially after a previous day with lots of stimulation.
Mom always enjoys breakfast, her favorite meal of the day: oatmeal with brown sugar, scrambled eggs, bacon, and orange juice.
But today she sat slumped forward in her wheelchair, eyes closed, too deeply asleep to eat.
When the staff urged her to eat, she yelled, "Leave me alone!" She refused to take her medications.
She was returned to her room, and when they placed her on the toilet, she yelled "Get the hell out of here." They transferred her to her recliner, where she again yelled at the caregivers to go away and leave her alone.
At lunch time, she was wheeled in to the dining room but still refused to eat and sat with her eyes closed in deep sleep.
I arrived and tried to talk to her. She did not open her eyes and responded only in slurred words. I managed to get her to the toilet, where it was clear her Depend had not been changed for 3-4 hours.
As we passed her black desk with the candy jar on it, she said, "I want a mint!"
I unwrapped one and gave it to her, but it lay in her curled hand. She couldn't even put it in her mouth.
I took her to the dining room and got her to drink a V-8, then started her on her lunch of pasta with shrimp.
I called the medications nurse with the news that she was now awake enough to take her meds.
"Her private caregiver will be here at 2 pm," I said, leaving at 1:50 pm and feeling good that she was eating a bit and about to take her medications.
But I got two more phone calls that afternoon: she had not eaten any more after I left, and when Bethlhem urged her to take her meds, she spit them back at her.
So I showed up again, shortly after 6 pm, and found her again in a very deep sleep.
I also found that her 2 - 10 pm private caregiver had neither arrived nor left me any message that she would not be able to work today. I called her and found her home with a stomach flu.
I decided that first of all Mom had to take her meds, so I found the nurse, got the meds, and made her swallow them all in applesauce. This took quite a while since she would only open her mouth a small crack.
Realizing that she was too sleepy to eat a warmed-up meal, I took Ensure out of the refrigerator.
I poured some in a cup and tried to get her to drink it. Holding the cup to her lips, I could hardly get her to take some sips and then swallow.
I switched to a straw and held the cup in her lap; for thirty minutes she took tiny sips. The cup of strawberry Ensure was about half empty.
Finally I decided to call it a day; I changed Mom into her nightgown, removed her false teeth, and brushed her eight remaining lower teeth.
I took her into the family area to watch Lawrence Welk.
On the way out of the Reminiscence Neighborhood, in the activity room, I noticed a white board with the following messages:
Word for today: