John Thorndike | The Last of His Mind |

Archive for January, 2010

After A Reading at Mac’s Backs

Wednesday, January 27th, 2010

Each reading I do from the book brings a new set of stories.

macs-backs

Reading at Mac’s Backs in Cleveland a few nights ago, there were plenty of people in the audience who’d had experience with Alzheimer’s patients. I’d chosen my reading selections for the night around one subject, coercion. It’s “the topic that fascinates me,” as I say in the book, “the one I never resolve.”

In the conversations we had after the reading, two people from the audience struck a nerve for me. One was a woman who was as adamant as my friend Sandy Weymouth in the book: Why, she wanted to know, should we cajole and force dementia patients to do anything? Why not let them choose to spend their days however they wish? Why force them to socialize, force them to attend different programs, force them to eat or drink? If they don’t want to eat, why not let them find their way out of life like that?

The second woman, much younger, worked as a recreational counselor in the dementia unit of a nursing home. In other words, she was someone who spent her days coercing Alzheimer’s and other patients to stay active, to stay involved. If she didn’t urge the residents to participate, she wasn’t doing her job. She liked working in the home, but she was fully aware of how much pressure she and others in the dementia unit put on the patients, almost around the clock.

I was fascinated to hear someone suggest that we just let Alzheimer’s patients drift away into their own worlds. This is a plan few people would accept—perhaps least of all those with relatives in nursing homes. Still, there’s an inherent logic to it, even a kind of respect. As it is, we treat people with dementia as if they were infants or very young children, and to me it often looks demeaning.

I didn’t come any closer to resolving the issue, but I was glad to hear it addressed, and to hear from someone who works, as they say, in the belly of the beast. In the nursing home, every assumption is that we are in charge of those with dementia, and we must manipulate them constantly to keep them involved. Yet when looking after a single person, a relative or spouse or friend, I think it’s rarely so easily decided. Every step of their care is debatable, or should be.

More than that, the entire topic is fascinating—and it’s that fascination which can turn a grinding and repetitive chore into an adventure.

Tags: , , , , ,
Posted in Uncategorized | 2 Comments »

Alzheimer’s in Haiti

Tuesday, January 19th, 2010

With this disaster in Haiti there must be elderly Alzheimer’s patients in Port-au-Prince and other towns who somehow survived the earthquake that killed their caregivers. If they haven’t died already, they could be wandering around not knowing who they are, not remembering where they live, or how to eat, or where to lie down at night to sleep. Some would be as helpless as infants—only they don’t look like infants. In a country where the most able-bodied are having a hard time getting food and water and medical care, those with dementia must be at extreme risk.

alg_school-collapse

We don’t hear much about dementia in third-world countries. The U.S. has about five million Alzheimer’s patients now, with 30 million in the rest of the world. We have more than our share percentage-wise, in part because we have better reporting of medical statistics, and in part because we live longer. Long life is now that double-edged sword: the longer we live, the more likely our brains are apt to go before our bodies.

Our education about Alzheimer’s is better. We don’t call it “senility,” as we once did, and we don’t call it “tired brain,” as they do in India. There’s a near-constant outcry about the need for better medications in the U.S., for better patient care, for more help for caregivers as they look after the afflicted at home. But what did Alzheimer’s care look like in Haiti a month ago? There couldn’t have been much help from the state—and today there must be none.

Caring for my father as Alzheimer’s took him down has set up a kind of filter for me—rather like the years I spent raising my son. I became a father, I joined the vast community of parents, and now I have joined the community of those who have looked after the elderly and those with dementia. In the case of Haiti, my mind jumps to those who are lost in the midst of chaos, who could make little sense of anything even if they were still ambulatory. Infants and those in the deep reaches of Alzheimer’s are especially vulnerable populations—and on the streets of Port-au-Prince, the latter must be almost invisible.

Posted in Uncategorized | No Comments »

Plans in Case of Alzheimer’s

Sunday, January 3rd, 2010

After those two hard stories in my last post, here’s something more heartening.

A friend of mine, Michael Daniels, who’s in his mid-sixties, has been thinking about his old age and who might be taking care of him. He’s perfectly healthy and his mind is certifiably sound, as you’ll read. But both his parents died with Alzheimer’s, and he’s concerned that at some point his own brain will come under attack. He’s single, he has no family, and like many of us he doesn’t want to be a burden on anyone, doesn’t want to drift into a long decline in a nursing home, no longer knowing who he is or having any memory of his past.

Michael’s goal is to escape what he sees (and what I see) as a grim scenario. He would rather die before falling into deep dementia.

41p4exkjawl_sl500_aa240_

I’m reminded of the plans made by the protagonist in Lisa Genova’s novel about early-onset Alzheimer’s, Still Alice. Alice is a professor at Harvard, only in her early fifties, but her mind is fast failing her. She knows where she’s headed, and doesn’t want to subject her family to a long period of care for a wife and mother who eventually won’t even know them. So she devises a test for herself which she puts on her computer, a series of questions:

What month is it?
Where do you live?
Where is your office?
When is Anna’s birthday?
How many children do you have?

If she can no longer answer these questions, she directs herself to go to a file in her computer, which will tell her what to do. She is planning a suicide.

I won’t give away what happens (read the novel), but the heart of her plan is to enable her to act when she still can, even though her mind is falling apart.

Michael, too, is trying to figure out a way to take control of his death when he no longer knows what he’s doing. His first step has been to establish a baseline of his mental condition, and to this end he has taken an extensive neuropyschological evaluation, administered by the Department of Psychology at Ohio State University. This was a four-hour set of tests and evaluations, far more extensive than Alice’s five questions—but the goal is the same, to determine, after future evaluations, at what point he will have passed some divide, with the knowledge that soon he will be unable to end his life, because he won’t remember his plan to do so.

Michael’s plan, however, involves help from his friends. He envisions a coach, or several coaches, who will help him when the results of his mental evaluations fall below a certain level. These neuropsychological exams are given all the time. My father had one, not as long and extensive as Michael’s, and the result was clear to the PhD who administered it: Dad had “advanced second stage dementia, most likely caused by Alzheimer’s.”

The tests are fairly dependable. Michael, or his coaches, will know where he stands.

The problem is figuring out what to do next. Michael is still working on that one. Alice, in Lisa Genova’s novel, plans to take care of it herself, by taking some pills. Michael hopes that his coaches will help him get to Oregon, where the doctor-assisted suicide laws might enable him to end his life.

One trouble is, you have to be a resident of Oregon for this to work. And most likely, you have to be of sound mind to request the suicide. There are some problems here. And Michael can’t simply ask friends to administer some drug when he no longer understands what he’s doing—for anyone who did that could be tried for murder. It’s a difficult question—but one many people have thought about. I have. What to do, in order to avoid years of life in the deep shadows of dementia?

“I’m just pursuing a plan,” Michael says. “It’s on the assumption that I’ll go somewhere where assisted suicide is legal—or perhaps it will become legal here.”

Michael has read Still Alice, and “if anything it enhanced my convictions to do something about this. The derailment of her plan is what encourages me to have a plan in place that cannot be detailed. The only trouble is that it leaves the coach vulnerable.”

Clearly, Michael does not have all this figured out. But who does? I find it fascinating that he has taken some steps, that he’s thinking about it, that he knows absolutely that he does not want to be living without his memories, his self-awareness, his ability to listen to stories and tell them himself. I’ll keep talking to him, and see where this leads.

Posted in Uncategorized | 2 Comments »

Two Brutal Stories

Friday, January 1st, 2010

A journalist I was doing an interview with last week told me a couple of amazing stories. The first was about an old guy with dementia, probably Alzheimer’s, who was slowly descending into the disease. He’d always been a good man, a good husband, and his wife was looking after him as he grew more worried, more upset, more obstreperous. What a change in him, and how painful for her. But she continued looking after him, trying to take care of him, trying to keep him calm at times. He grew violent, and probably she was scared. But he had always been such a good man.

And one day he lashed out at her hard. He beat her and beat her until she died.

This can’t be the only story of it’s kind. I know there’s a movement to try to get guns and ammunition out of the houses of Alzheimer’s patients. Lots of guns in America, and they’re a bad combination with dementia, which can have violent aspects. But even without a gun, a still-strong Alzheimer’s patient, no matter how kind and gentle he might have been in the past, can wreak some havoc. Can kill someone he loves, or used to love and no longer even recognizes.

Then, a second story, about a man who apparently dragged his father into the water off a Florida beach—to hide his nakedness, to clean his dirty body and diaper, the story isn’t entirely clear—only to have his father die the next day.

Bobby Yurkanin and his father

Bobby Yurkanin and his father

This story I tracked down on line, and you can read a full account here. It’s the story of Bobby Yurkanin, a man in his fifties who had, in spite of the troubled family of his youth, had returned to look after his mother, who was dying of cancer. Shortly after she died, in 2001, his father showed the first signs of dementia, and Yurkanin began to look after him, as well.

His caregiving went on over years—and his father was a far more difficult patient than my father was. He wandered through the condominium where they lived, sometimes nude, sometimes entering into other people’s apartments. He went out on the street wearing only a diaper.

To quote the AP story about the Yurkanins, “The son assumed his caretaker role out of necessity, friends said, despite a strained family history and a less-than-perfect childhood. And those who observed him and his father together often describe the younger Yurkanin with similar adjectives of praise:

Dutiful. Patient. Dedicated.”

Others describe times when Bobby Yurkanin lost control of himself, screamed at people, yelled obscenities. He was clearly under great stress: the natural stress of a caregiver overwhelmed with the extended, year-after-year obligations of looking after a difficult dementia patient. No one accused Bobby Yurkanin of abuse: “For all the unraveling that now seems apparent in Yurkanin’s life, many who observed him with his father say they saw a son who, yes, would grow frustrated by his dad and sometimes raise his voice, but whose care was undeniably loving.”

yurkanin2

The great unraveling came on a Fort Lauderdale beach when the elder Yurkanin started to take off his clothes, and Bobby pulled him into the waist-deep water, where he pulled down his shorts and dirty diapers. There was a struggle, Bobby hauled his father out of the water, he lay on the beach, an ambulance came—there are many more details to this in the link above—and the next day he died.

Bobby Yurkanin was charged with murder.

It’s another story that seems completely believeable, completely understandable. The pressures that caregivers are subject to, day after day, month after month, year after year, often with an apparently-endless life of restrictions and trials ahead of them, make it inevitable that sometimes people are going to crack. In Bobby Yurkanin’s case, almost a decade of support and care for his parents ended on a Florida beach with his father dead on the sand.

The last paragraph of the AP account reports of the younger Yurkanin: “Only in retrospect has he become aware how overwhelmed he was as a caretaker, his lawyer says. Under the circumstances, he adds, Yurkanin feels no burden lifted.”

It’s one of those stories about which even the best of us might think, That could have been me.I never came close to any kind of violence against my father—but I certainly felt the frustration, an occasional madness that would drive me upstairs to my room, there to lament any harsh or cold words I had uttered to my father, the man who had done so much for me my entire life. But what if my father had been as much trouble as the senior Yurkanin? I cannot know how much frustration I could have withstood.

Two stories, two brutal stories.

Other than that, a Happy New Year to all!

Posted in Uncategorized | No Comments »