These may sound like accusations but in fact I’m trying to excuse the behavior of people toward the demented, which tends to be awkward at best, unkind, and thereafter progresses on a sliding scale into savagery. It’s untrained. It’s untrained, certainly, though should the behavior of humans toward others need training to be fair? If it does, it can only be because some unfortunate ghost in the machine has survived, subconsciously, in our own minds, that marks out brain afflictions as dehumanizing and dehumanizes accordingly. This is the only way I can account for the behavior of the many doctors, specialists, and consultants written about in dementia forums who are on the record as having treated those with Alzheimer’s so badly and so dismissively. And how else can we explain the treatment of the elderly in nursing homes (some elderly, in some nursing homes), who are talked to like bad children, neglected, ill fed, abused, or even—as in a recent case in the newspapers—tied onto their chairs?
The old woman on the bus who shouted—she was real. But the woman in the supermarket—I made her up. Or rather my brain did, while I was sleeping. The thing is, she was me, the woman in the dream, the Barbour bag lady in thirty years’ time. She wasn’t like me, she was me. It was me. All that separated us was time, and the dementia roll of the dice that will determine whether in 2040 I’ll be one of the 90 million, or not.
It’s time to stop reading the dementia books.
Chapter 32
Things that were hard to bear are sweet to remember.
—SENECA
THIS IS WHAT MIGHT HAPPEN TO OLD PEOPLE WHO GO into nursing homes. They have secure, dull lives looked after by gentle Eastern Europeans in easy-care aprons. Their families ring when they get around to it. Their tidy, institutional bedrooms with the matching floral duvet and curtains show little sign of life, other than for the book and glasses by the bed, and the two propped cards that have arrived from old friends.
It’s two hours’ journey from the house to the home, which is a ranch-style bungalow, purpose-built, U-shaped with deep wings and a steeply pitched hipped roof. Inside it’s warm, draft-proof, with tight modern windows, wide carpeted corridors, jolly pine furnishings, and chain-store chandeliers.
We go to visit at Easter; our holiday route almost passes the door. There has been excited anticipation of our visit. Nancy and Morris are washed, pressed, have had their hair cut that very morning. Because we are en route and in a rush, we anticipate we’ll be there for less than an hour, but that seems to have been forgotten. Nancy and Morris’s lunch has been delayed indefinitely in our honor. As it turns out, we’re running late and spend twenty-seven minutes in the building. Chris speaks to the manager and asks where we can have our meeting. He doesn’t use the word meeting, of course, but that’s what this feels like, a hurried business conversation in a motel conference facility. We use an alcove designed for the purpose just by the front doors, a cubbyhole furnished with three chairs.
Morris isn’t around. He’s wheeled himself off to his room to get a birthday card for Caitlin, one that we bought and mailed to him in readiness. I go into the dayroom and see an old lady there. She’s sitting alone in a winged armchair, rubbing her hands energetically together and muttering.
“Oh, and she said, she said it was all right, so I suppose it is. It must be if she says so. She knows everything.”
Nancy. In some bizarre unexpected way I have been missing her. Her eyes are fixed unblinking on the table twenty feet away, where six residents and two staff are sitting having a conversation, desultorily engaged in nursing home activities. Playing cards. Sticking down a magazine cutout collage. I stop at her chair and stoop to touch her arm and her face shifts from its blankness briefly to a look of alarm and then into a great beaming smile.
“Oh! Hello! What on earth are you doing here?”
She seems genuinely to recognize me. Chris had this experience last month, when he came to see that they’d settled in, and his mother greeted him with “So how is the family?” Her improvement since she’s been here has been quite remarkable, say the staff. That’s why the social workers have already let it be known that they wouldn’t let her out to live in the civilian world again. Morris, a couple of weeks ago, was on the phone to Chris to say that he was thinking about returning to live with us, and Chris had had to tell him so.
“I’ve come to visit you,” I say, kissing her and offering an armful of supermarket tulips. “Look, flowers for your room. And a box of Dairy Milk, your favorites.”
“Oooh, thank you,” she says. “Gimme gimme!” Making playful grabbing motions.
“Your grandchildren are just round the corner, in the visitor chairs,” I say to her. “Do you want to come and see them?”
“Oh no. No, thank you. I don’t think so. Not today.”
“Come and see them. Just for a minute.” I hold my hand out and she takes it, getting up and toddling after me. “Well, all right, then. Seems like I don’t have any choice. As usual.”
Nineteen minutes left. I look covertly at my watch. Morris arrives in his chair with Chris, all smiles, looking well.
“Here he is,” Nancy says. She seems to know who Morris is. She tells him off when he starts talking about their new life: “Oh, hold your wheesht, you,” slapping him flirtily on the knee. We talk about our trip south, and ask about the home. They have a pretty good social life, it seems, though Morris has been reprimanded for preferring to sit with a book than join in, he tells me. He’s reading about Hitler’s last days in the bunker. He urges me to visit his room and see his certificates and there they are, thumbtacked to the wall. One is for winning at the Beetle drive, the other for being placed third in carpet bowls. The children don’t say much and neither does Nancy, but she smiles at everybody and her teeth are clean. She is altogether immensely clean, her fingernails white and her silver bob immaculate. Morris has no complaints, he says, other than about being kept waiting for meals once they’re seated in the dining hall. Their timekeeping here isn’t that impressive and it’s annoying having to wait. The food’s pretty good, though. And he has television in his room.
“How’s she been?” I whisper to Morris, while Chris is chatting to his mother.
“Pretty good,” he says. “She’s in this part of the home with me some of the time … but the rest of the time she’s in the Alzheimer’s wing, locked up.” He looks embarrassed.
“What’s it like through there?” I ask, looking toward the security doors.
“Just like this side, a bit smaller, but otherwise a mirror image of here,” he tells me.
Nancy has gone through the looking glass.
“She wanders into other people’s rooms, apparently,” Chris tells me later. “Ignores them, goes and looks out of the window and then leaves without saying anything.”
It’s time to go.
Nancy tries to follow us out of the building.
“Will you be back soon?” she asks, anxious, trying to grasp at my hands.
“Yes,” I say. “Very soon,” nudging at her arms so I can close the door.
Morris is barking instructions at her. She turns to him and she says, “Just wait till I get you home.”
ALMOST EXACTLY A year later, Morris died at the home from kidney failure. During his last illness he spent a lot of time anxious about Nancy, unwilling to stay in bed. She might be up to something. He ought to be there. He couldn’t rest.
Nancy didn’t understand or mark his passing and his funeral service was held in Edinburgh as he wished. Nancy was judged too ill to make the journey, which would have entailed spending most of a day on the train south, a night in the city, and another day on the train back. In some ways she’s very ill, and in others amazingly robust. Physically, she continues to be good for her age. The nursing home staff speak about her with touching protectiveness. She remains somebody who wants to be doing things and busy and finds it hard to sit still. If she’s awake, she’s usually on the move. She’s prone to aggression; there are long gaps between haircuts as they have to pick the
right day to embark. Haloperidol (Haldol), an antipsychotic, is administered in small doses, a half teaspoon two or three times a week, on an ad hoc basis of need, and doesn’t appear to slow her down. She’s unaware who anybody is, but keen to be included in the group, despite her communication difficulties. Shrunken, but insistent on wearing favorite old trousers, she gathers spare fabric bunched up at the waistband with one hand as she shuffles about. She looks like a very old lady now. Having rejected, finally, the wearing of false teeth, her food’s mashed up for her; she eats only with her fingers, and can be insistent about keeping moving, eating a little on each circuit of the home. Often she hasn’t the patience for dealing with food at all, and steals a neighbor’s tea biscuits later. She gets dietary supplement drinks. On a good day she’ll react positively to the photographs in her room, though she can’t put a face to a name. She talks to staff about her parents sometimes. Occasionally she mentions a man she used to know, a man in a wheelchair.
As for me, I’ve arrived, already, at a state of self-protective forgetting. People are good at that, at moving on, dwindling the past into a story we tell ourselves, into parables, and choosing the future over the past. It’s true that every now and then mistakes that I made rear up in memory, like splinters surfacing out of a finger. Memories of bad days, revisited synaptically in sound and vision, far outweigh the good. But it’s also true that, as Oscar Wilde put it, “The great events of life often leave one unmoved; they pass out of consciousness, and, when one thinks of them, become unreal. Even the scarlet flowers of passion seem to grow in the same meadow as the poppies of oblivion.”
Additional Reading
Online Resources
Useful resources on the Internet divide into two main types: those that offer information, and those that offer support. I can’t urge you strongly enough, if you are a caregiver of someone with dementia, to join a forum community and share your day-to-day struggles, concerns, and questions. “Talking” online to others who have just the same kind of issues and crises is invaluable. There is a lot of genuine companionship and good advice out there. Just to have an ongoing conversation with others in a similar situation to yourself, and to forge friendships, is immensely helpful and can vastly improve caregiver morale.
www.alz.org
The Alzheimer’s Association. Education, advice, publications, and support. A guide to your rights and options. A very popular forum, where you can “talk” via message to other caregivers and sufferers. Twenty-four-hour toll-free advice on the phone.
www.alzfdn.org
Alzheimer’s Foundation of America. Practical advice about the technicalities of caring for and supporting someone with dementia. A not-for-profit organization that acts as an umbrella for 1,200 other organizations. A useful list of government organizations to contact, under caregivers’ tips/government/federal resources.
forum.alzheimers.org.uk
“Talking Point,” a useful, busy caregivers’ forum hosted by the Alzheimer’s Society in the United Kingdom. Though the drug names and care procedures and legislation may be different, you’ll find British caregivers have many of the same kinds of problems and solutions.
www.alzheimersreadingroom.com
A useful digest of Alzheimer’s stories in the news, and articles on aspects of dementia and dementia care, edited by a caregiver.
www.alzinfo.org/forum
A forum for those affected by Alzheimer’s, hosted by the Fisher Center for Alzheimer’s Research Foundation (www.alzinfo.org).
www.caps4caregivers.org
CAPS—Children of Aging Parents. A nonprofit charitable organization that aims to offer support and information for caregivers to the elderly. There is also an online support group.
www.caregiver.org
Family Caregiver Alliance. Campaigning on behalf of caregivers, providing education and support. State-by-state navigator for care options. You can sign up to “talk” to other caregivers online.
www.caregiving.com
Information, personal stories, resources.
www.caregiving.org
National Alliance for Caregiving. A nonprofit coalition of national organizations focusing on issues surrounding family caregiving. An advocacy group.
www.ehealthforum.com
Hosts forums for a whole list of illnesses. Choose “Alzheimer’s” from the menu. Post problems and get feedback. This Web site says that medical personnel can give feedback also; you need to sign up for this.
www.eldercare.gov
A search facility that puts Americans in touch with finding the organizations in their own area that can help and advise about home-based and community care.
www.thefamilycaregiver.org
The National Family Caregivers Association. Information and advocacy: giving a voice to the vast silent army of caregivers in the United States. The Family Caregiver Forum has message boards where you can post your problems and solutions and share with others.
www.healthboards.com
Forums for all sorts of illnesses: Go to the message board index and choose Alzheimer’s and Dementia, or put “Alzheimer’s” into the search box.
www.helpguide.org
Navigate via the Seniors & Aging link, to Alzheimer’s/Dementia. The “Support for Caregivers” section has good advice.
www.mayoclinic.com
The Mayo Clinic’s own information pages about Alzheimer’s (follow the links) offer good basic guidance. The blog strives to be positive and can-do. There is a chance to comment; the comments from caregivers present an interesting contrast.
www.nia.nih.gov
National Institute on Aging Web site. Click on Alzheimer’s Disease Information. Clear and simply written information on diagnosis, treatment, and caregiving.
www.tangledneuron.info
“A layperson reports on memory loss, Alzheimer’s and dementia.” A useful digest of dementia news.
Blogs
More and more caregivers are beginning to use the Internet to post diaries of their thoughts and experiences. You may find some of the following blogs useful, though be warned that sometimes their sadness and courage can prove overwhelming.
www.alzheimersdad.blogspot.com
www.alzheimersspeaks.wordpress.com
www.acaregiversjournal.com
www.eldercarecafe.blogspot.com
blog.seattlepi.com/witnessingalzheimers
www.mindingoureldersblogs.com
www.ajourneywithalzheimers.blogspot.com
www.knowitAlz.com
www.thelastofhismind.com
www.killingmyfather.com
Popular Books About Dementia and Alzheimer’s
The Alzheimer’s Action Plan, by P. Murali Doraiswamy and Lisa P. Gwyther—A guide that looks at what can be done about MCI and early stages of dementia.
Alzheimer’s from the Inside Out, by Richard Taylor—Essays written by a psychologist and early-onset-dementia sufferer, observing his own deterioration.
The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, by Norman Doidge—An interesting book about brain plasticity, its ability to rewire itself.
A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier, edited by Patricia R. Callone—A very practical guide popular with caregivers.
Creating the Good Will, by Elizabeth Arnold—A comprehensive guide to financial end-of-life planning.
Dementia Diary: A Care Giver’s Journal, by Robert Tell—An account by a son of his mother’s slow descent into disease.
Elder Rage, or Take My Father … Please! by Jacqueline Marcell—A popular and cathartic howl of frustration by a child looking after a difficult aged parent.
Learning to Speak Alzheimer’s, by Joanne Koenig Coste—Personal experience and person-centered home-based-care advice from the wife of an Alzheimer’s sufferer.
Losing My Mind, by Thomas DeBaggio—An account of his own decline, by an early-onset-Alzheimer’s sufferer.
Motherin
g Mother: A Daughter’s Humorous and Heartbreaking Memoir, by Carol O’Dell—Another account of a mother with dementia being taken into her child’s home and life and the struggles that ensued.
Still Alice, by Lisa Genova—A bestselling novel about a psychology professor with early-onset Alzheimer’s.
The 36-Hour Day, by Nancy L. Mace and Peter V. Rabins—The best-known of the how-to-care guides for family and home-based caregivers.
Acknowledgments
Introduction
Luis Buñuel, My Last Sigh, translated by Abigail Israel, published by Alfred A. Knopf, a division of Random House, Inc. A paperback edition is published by University of Minnesota Press.
Chapter 2
Aaron Copland quotation reprinted by permission of the publisher from Music and Imagination: The Charles Eliot Norton Lectures 1951–52 by Aaron Copland. Harvard University Press, Cambridge, Mass. Copyright © 1952 by the President and Fellows of Harvard College, Copyright © renewed 1980 by Aaron Copland.
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