I've been trying to write this article for a week, about end of life issues, dementia, institutionalization and what Katrina did to those who were already borderline. I keep injecting too much emotion, too much personal information. Here is my latest try. Nurses Announcements Archive Article
My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow.
Did we think she should give permission for a feeding tube?
Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England.
What else were they going to do with her?
She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed.
Nine years in a place she hated, and my first thought was that the stroke might offer her a way out.
If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines.
Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering?
I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke.
How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand?
The stroke took away, and the dementia makes it impossible to get it back.
Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death."
Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"?
Why is it that they don't listen to the son who knows?
This isn't "doing everything." It's just prolonging her death.
It's already gone on long enough.