THE SENSE OF AN ENDING{dying with dementia}

[xchrom]

http://www.newyorker.com/reporting/2013/05/20/130520fa_fact_mead


Beatitudes aims at offering dementia patients—“people who have trouble thinking”—a comfortable decline instead of imposing a medical model of care, which seeks to defer death through escalating interventions. Photograph by Phillip Toledano.

LLast summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.

Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.

One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her.

She told me, “It was heartbreaking, but this gentleman was there to teach us something. He was saying, ‘When I resist, it’s not that I don’t like you, or I don’t want your help. It’s that I can’t stand it when you manipulate my body in that way.’ ” Alonzo explained that it can be particularly hard for people with dementia to identify the source of pain, or to articulate their experience of it. But his body told the story. As Alonzo put it, “All behavior is communication.”

[Th1onein]

1. It's amazing what a little human kindness can do, isn't it?

Kick

[russspeakeasy]

2. My thanks.

[enlightenment]

3. Thank you for posting this.

A beautiful, well-written, and thoughtful article.

[live love laugh]

4. My childhood friend's mother died this year after suffering from dementia. She was widowed

for five years and pretty independent--until last year. It was then that my friend and her sister noticed that their mother would be in bed every time they visited. And the sister notice a putrid smell when visiting. After pulling the covers back they found that their mother's foot had literally decayed and was gangrenous. She never said a word. She was hospitalized, her leg amputated and she was put into a nursing home where she did not last 6 months. The point is that this corroborates the story above regarding the tolerance for pain which is not something I'd heard of before now.

[azbillyboy]

5. In March

I lost my Mother (90) to dementia. It accelerated very quickly starting at the beginning of 2008. By the time she died, she did not know me or anyone else. Until I got her moved into a care facility she would literally sit in her own body waste in her house.

I can not think of ANY worse way to die.

Why can this country spend so much fucking money on wars but not work on cures for diseases like this? I have read that Dementia is striking more and more people earlier in their lives.

Now every time I forget a name or some other minor fact I freak out wondering if I am next.

[enough]

6. Sounds like a wonderful place, with a lot to teach us all. But.....

But there's another message in this article. Eighty-five thousand dollars a year (said to be the same as a typical nursing home). What percentage of the population is going to be able to afford this kind of care, or even typical care in a typical nursing home? Medicare does not cover residential dementia care.

snip from the article>

Despite the touches of gracious living at Beatitudes, the average cost of care is roughly the same as the cost at a typical nursing home: just under eighty-five thousand dollars, not including medications, with half of the total going toward staff salaries, and ten per cent toward meals.

snip>

[xchrom]

7. i've been a major care taker for 3 people with debilitating, fatal diseases and for my father

i had to quite work for a good number of years to care for him in my house.

it is a daunting process -- especially for those dealing with dementia, like my father had.

[enough]

8. I hear you, xchrom. I took care of my aged mother and father at home,

both of whom had different forms of dementia and were completely dependent for every aspect of life. It took me two or three years to regain my physical health after the caregiving was over. The mental health took longer.

I have a huge respect for people who do this work, whether taking care of their own relatives, or working with dementia folks in care facilities. I can safely say it was the hardest thing I've ever done.