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Literary Rx For Alzheimer's Caregivers: The Prizewinning Candor Of 'Keeper'

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WBUR's "Fade To Darkness" series on Alzheimer's this week offers a highly helpful resource page here, including a list of books and even a link to an Alzheimer's bookstore. But I'd like to add one personal recommendation for a book newly out in paperback: "Keeper," by the British writer Andrea Gillies. It is literary alchemy: it takes the nightmare of a woman who makes the awful error of committing to take care of her mother-in-law with Alzheimer's in a remote house in northern Scotland, and turns it into something beautiful. Beautifully expressed, that is.  I suspect some among the legions of Alzheimer's caregivers may not want to read any more about all-too-familiar daily challenges, but others may glory in seeing familiar thoughts and feelings so gratifyingly put into words. And they could use "Keeper" as a teaching tool to help others understand the strains of life in the Alzheimer's trenches.

Here are several brief excerpts from "Keeper," which won the 25,000-pound Wellcome Trust Book Prize in 2009. And at the end, I've added the 19th-century poem that Andrea Gillies uses to open the book. "Nancy" is the mother-in-law, "Chris" the husband.

If I had to pick one catch-all descriptor for Nancy's life in the last few years it would be misery. Profound misery, unceasing and insoluble. She knows that something is wrong, very wrong, but what is it? She's had a series of terrible daily encounters with herself and her environment that might have come directly from an amnesiac thriller: waking to find she has aged fifty years overnight, that her parents have disappeared, that she doesn't know the woman in the mirror, nor the people who claim to be her husband and children, and has never seen the rooms and furnishings that everyone around her claims insistently are her home. Time has slipped, gone seriously askew. Every day for her is spent in an ongoing quest to put things right. The trouble is, she can't seem to concentrate on the question or on possible clues to it. She can't navigate the problem. When she left us for the nursing home, she was daily engaged in a very protracted, slow-motion form of panic. It's been over eight years now since the formal diagnosis and eleven years at least since symptoms began, but even after all this time, she's only at stage 6 of the disease. Stage 7 looms, the cruelest and last phase, with its loss of continence, motor control, speech and ability to swallow. Eventually her lungs will forget how to breathe, her heart forget how to beat, and her quest will come to an end.

(This scatological scene stuck in my mind for a long time — for both its actual and symbolic content:)

There are several alarming toilet incidents. The kind that make a person gag when called upon to deal with them. By "a person" I mean me. Chris is made of stronger stuff and this is chastening. I didn't have any problem dealing with the children's bottoms when they were little, after all. I try to think of Nancy as a big, stroppy baby — one shouting "I didn't do it! I didn't do anything! It's nothing to do with me!" But it doesn't help. One morning we come down to find — and I'm sorry to be so graphic, but this account is only of any use if it's honest — what can only be described as a trail, leading from the day bathroom out into the hall. The beige-colored carpet is smeared. Turds have been deposited at intervals and then trodden in. Opening the bathroom door, the floor is awash. Chris steps in and rolls up his sleeves and deals with it. I offer to go and have a look at the perpetrator. She's fast asleep. The feet are easily sorted out, courtesy of a series of wet wipes and a supermarket bag, breath held and eyes averted. The carpet will never be the same.

(Don't dislike her. She shows saintly patience for a long time. Then comes the breaking point:)

I'm shrieking now. I'm losing it. Months and months of holding back and being reasonable have their price and here is their invoice.
"I am so sick of you!" I yell. "I am so sick of you and looking after you and the endless bloody drudgery!"
Nancy roars. That's the only word for it. She roars like a lion, like an old skinny lion with a mangy coat, left behind by the pride to starve. She's dangerous. She's a cranky old lion and still has teeth. She swings the shovel toward my head, and I make a reflex movement and it misses. She throws the shovel against the wall, where it breaks into two pieces and falls. She brandishes the brush and jabs forward with it at my chest. I grab it and we're struggling. She lets go of the brush and has me by the upper arms with tight white fingers. She pushes suddenly and I fall backward. She's shouting incoherently; I can't make out the words. I barely hit the carpet before I'm up again and grabbing her. I have her by the upper arms now. Now it's her turn to topple backward.
"Don't you ever, EVER get aggressive with me, you vicious old cow, or you will be in a nursing home before you can say tea bag!" I screech. I can't catch my breath and it occurs to me that I'm going to have a heart attack and die. All I can think is, What if it had been one of the children? What if she'd taken a swing at Jack and the sharp edge had hit home, across his cheek, his ear, his eye?
....
I slump onto the floor, my back against the door. I'm shaking violently. I can't believe that I threatened the nursing home as a punishment. Elder abuse. Elder abuse is all I can think of. Strictly speaking it was self-defense — or retaliatory, at least, as she pushed me first — but even so. She has Alzheimer's. What in hell am I doing?

(From the introduction:)

Question: Does anybody who hasn't been through it understand just how dehumanizing caregiving can be? (A rhetorical question. Answer: no, or there would be proper nursing home provision and it would be free.) As things stand in the United Kingdom, dementia patients in nursing homes, unlike cancer patients in hospitals, are regarded as "social care clients" and charged hotel rates, and if they have savings and houses must give them up to pay the bills. We British may regard ourselves as two steps ahead of the United States in the matter of universal rights to health care, but when it comes to dementia, the two systems are very much alike.

The poem that opens the book, by John Clare, c. 1840:

I am — yet what I am, none cares or knows;
My friends forsake me like a memory lost;
I am the self-consumer of my woes: --
They rise and vanish in oblivion's host,
Like shadows in love's frenzied stifled throes: --
And yet I am, and live — like vapours tossed

Into the nothingness of scorn and noise, --
Into the living sea of wakeful dreams,
Where there is neither sense of life or joys,
But the vast shipwreck of my life's esteems;
Even the dearest, that I love best
Are strange — nay, rather stranger than the rest.

This program aired on October 21, 2011. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth section.

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