Wednesday, February 15, 2006

Sadness and Decisions

There's a hush over the Reminiscence Neighborhood when I arrive today at 2:30 pm. A caregiver walks past with a tear-stained face.
"Lulu died an hour ago," another caregiver tells me. "They took her body away on a stretcher."
"Oh, poor darling," I answer. "She was such a sweet person."
My mother and the other residents have been protected from knowing about her death.
Lois G. and her husband Arthur arrived less than a year ago. His room was on another floor of Ocean View Assisted Living; hers was on the floor for Alzheimer's and other forms of dementia, where Mom lives. He was wheel-chair bound but took the elevator up to visit her daily, zipping around the building in his motorized wheelchair. Earlier he had been a state senator in Minnesota. Now he was working on a book and keeping up with the newspapers daily.
She was cheerful and good-natured but completely lost. Her speech did not come out in recognizable words but in babbled syllables--only the intonation sounded right.
She sat at meals eating with her hands and talking cheerfully with others at her table--until her husband died.
This happened a few months ago, the result of a heart attack, I believe.
Lois, known as Lulu, understood that he was gone. She grieved for him.
A day and a half ago a hospice caregiver asked me to help him transfer Lois from the wheelchair to her bed. Her room was near Mom's, and no real staff member was handy. New to the building, he thought I was a PT. (Remind me not to wear jeans, a t-shirt, and a lanyard with keys on it around my neck.)
I helped him and realized that Lois was failing fast. She wasn't talking or alert.
"She can't swallow," he said. "She's on hospice."
So that was why I'd seen two of her daughters hovering around the floor in the last few days. They knew she was dying.
They had made the tough decision about what to do when a loved one whose brain is deteriorating gets to the point that he or she is unable to swallow.
The choices are intubation--feeding by a tube inserted into the stomach--or the natural consequences of not eating and drinking.
This decision lies ahead for us. My sister, Emily, wants the four of us to talk and decide what to do before the moment of crisis comes.
Should the death be "natural" and come fairly soon after Mom loses the ability to swallow?
Or should her life be lengthened by the use of a feeding tube? A few years ago Mom signed a statement saying she doesn't want extraordinary measures like this, but if we asked her now, she might want to do anything necessary to keep living.
Emily points out that once you insert a feeding tube, you may later be faced with the decision of whether to remove it, after the patient's health has declined. It may be easier not to insert it.
Another possibility is that the person who was dementia and a feeding tube might fiddle with it and try to pull it out.
"What a hard job you have," I always tell Marnie, one of my favorite caregivers. "It's not like caring for babies or children. You grow to love the residents, and then they die."
"Yes," she says, today with tears in her eyes.
It's a calling for the saints, the Mother Teresas of this world--to care for elderly people afflicted with dementia, trying to keep them happy, safe, and comfortable in their last months and years.

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