Keeper: One House, Three Generations, and a Journey into Alzheimer's

( 9 )

Overview

Five years ago, Andrea Gillies? writer, wife, and mother of three?seeing that her husband's parents were struggling to cope, invited them to move in.  She and her newly extended family relocated to a big Victorian house on a remote, windswept peninsula in the far north of Scotland, leaving behind their friends and all that was familiar;  hoping to find a new life, and new inspiration for work.

Her mother-in-law Nancy was in the middle stages of Alzheimer's Disease, and...

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Keeper: One House, Three Generations, and a Journey into Alzheimer's

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Overview

Five years ago, Andrea Gillies— writer, wife, and mother of three—seeing that her husband's parents were struggling to cope, invited them to move in.  She and her newly extended family relocated to a big Victorian house on a remote, windswept peninsula in the far north of Scotland, leaving behind their friends and all that was familiar;  hoping to find a new life, and new inspiration for work.

Her mother-in-law Nancy was in the middle stages of Alzheimer's Disease, and Keeper charts her journey into dementia, its impact on her personality and her family, and the author's researches into what dementia is.   As the grip of her disease tightens, Nancy's grasp on everything we think of as ordinary unravels before our eyes. Diary entries and accounts of conversations with Nancy track the slow unravelling.  The journey is marked by frustration, isolation, exhaustion, and unexpected black comedy. For the author, who knew little about dementia at the outset, the learning curve was steeper than she could have imagined. The most pernicious quality of Alzheimer’s, Gillies suggests, is that the loss of memory is, in effect, the loss of one’s self, and Alzheimer’s, because it robs us of our intrinsic self-knowledge, our ability to connect with others, and our capacity for self-expression, is perhaps the most terrible and most dehumanizing illness. Moreover, as Gillies reminds us, the effects of Alzheimer’s are far-reaching, impacting the lives of caregivers and their loved ones in every way imaginable.

Keeper
is a fiercely honest “glimpse into the dementia abyss”—an endlessly engrossing meditation on memory and the mind, on family, and on a society that is largely indifferent to the far-reaching ravages of this baffling disease.

From the Hardcover edition.

Winner of the 2010 Orwell Book Prize

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Editorial Reviews

From the Publisher
“Forthright, smartly researched, and warmly recounted…Gillies writes with a novelist’s eye for detail, and her unflinching rendering of Nancy’s excruciating loss of self is skillfully and tenderly drawn…An invaluable resource.” Publishers Weekly (starred review)

“With an economy of expression, an eye for detail and a storyteller’s knack for dialogue, Gillies charts Nancy’s terrible course from doddering to vicious and her own decline into caregiver dementia…An unvarnished cautionary tale.” Kirkus Reviews (starred review)
 
“The key to Gillies’ personal strength resides in the numerous literary and philosophical observations she frequently quotes and from which she draws inspiration in this awesome chronicle.” Booklist (starred review)

Praise from Abroad for KEEPER
 
"This is one of the most moving and important books that I have read on Alzheimer's." — John Bayley, Author of Elgy for Iris

“Overflows with history, literature…[a] compassionate account.” Times Literary Supplement
 
“A painfully honest account.” —Daily Express
 
“The most poignant aspect of Keeper is the way Gillies traces the increasingly unbearable pressures that are placed on carers as patients progress from memory lapses, not remembering important life events and no longer recognizing family members, to the final advanced stage that Gillies calls the ‘darkest shadow.’” —The Lancet
 
“Andrea Gillies’s account of living with Alzheimer’s is the perfect fusion of narrative with enough memorable science not to choke you. It’s a fantastic book—down to earth and darkly comic in places.” —The Psychologist
 
“In Keeper there is hope and humanity and the warmth of sacrifice.” —Catholic Herald
 
“Deeply moving.” —Daily Mail

From the Hardcover edition.

Publishers Weekly
In her forthright, smartly researched, and warmly recounted chronicle of her troubled two years taking care of her mother-in-law in the throes of dementia, British journalist Gillies reveals the "dehumanizing" toll of the disease on the whole family. Gillies, her husband, and three children moved to a rambling Victorian house in the wilds of a Scottish peninsula and took in Chris's parents, Edinburgh residents who had been showing signs of needing increasing care: irascible Morris had "bad legs," while his strong-willed wife, Nancy, at 79, was spiraling deeper into Alzheimer's. As Nancy's memory deteriorated the entire family unit began to collapse under the strain of constant caretaking. Gillies writes with a novelist's eye for detail, and her unflinching rendering of Nancy's excruciating loss of self is skillfully and tenderly drawn. As well, Gillies has delved vigorously into the research, offering the received wisdom on Alzheimer's, which dictates that acceptance and distraction are the most helpful methods to deal with sufferers ("Make Alzheimer's fun, they exhort"). Moreover, her memoir is an invaluable resource on the stages of Alzheimer's, history, drugs, brain function, care-giving options, even literary works. (Aug.)
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Product Details

  • ISBN-13: 9780307719126
  • Publisher: Crown Publishing Group
  • Publication date: 10/25/2011
  • Pages: 336
  • Sales rank: 800,888
  • Product dimensions: 5.20 (w) x 7.90 (h) x 0.90 (d)

Meet the Author

ANDREA GILLIES is a writer and journalist. Keeper won the 2009 Wellcome Trust Book Prize, the United Kingdom's pre-eminent popular science writing award, and the 2010 Orwell Prize. She lives with her family in St. Andrews, Scotland, and has just completed her first novel.

From the Hardcover edition.

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Read an Excerpt

Chapter 1
 
Three Years Ago
 
Nancy is standing at the window again, the one with the spectacular view, worrying about how the oil tanker will manage to get out of the bay. She is making her anxious hands, rubbing each palm against the back of the other in turn, brisk and rhythmical.
 
“I just don’t think it will get out of the space, it’s too big,” she says, rubbing harder, her eyes full of concern. She is wearing all the cardigans she could find in her bedroom, in layers, having insisted on doing up all the buttons on each and tucking each sleeve under at the wrist. Her mood has improved since breakfast time, when she woke with the now- characteristic belief that she was newly discharged from hospital into the care of strangers: “But where is my family? Are they coming for me?”
 
“We are your family, honey,” I soothe.
 
She laughs disdainfully, shaking her head. “Either you’re a liar, or I’m going mad.” Most mornings, there are tears. Tears and confusion. Dressing is hard. She wants to do it herself, but bras and trousers go on backward. If we don’t get to her quickly enough, she wanders the halls in her underwear. She looks younger than seventy- nine, everybody says so, and this is especially evident in her near- naked wanderings. Physically she’s amazingly good for her age: unstooping at five foot seven, well proportioned other than a mild potbelly, determinedly upright.
 
Her legs are strong and shapely. She can walk for miles, has thick silvery hair cut in a bob (it was sandy colored once, set into soft curls at the local salon once a month) and a charming smile, her pale face barely lined, though her blue eyes are rheumy now and her nose growing hooky. She’s acquired a prickly white beard under her chin, which my husband, Chris, shaves off every now and then. She won’t always let him at it. She can be protective of it, sitting stroking it in her chair. Some days it horrifies her. “Who put this here? Where did this come from? Take it away!” Or she thinks it’s a wound, a scab. “I must have tripped and fallen. But it’s getting better now.” Nancy’s at a good- days and-bad- days stage of Alzheimer’s, and on bad days she accuses Morris of having given her the stubble, perhaps because she recognizes that beards are properly the province of men.
 
She returns to her little sitting room, her coal fire, her husband, and sits in her pale blue winged armchair. She asks, now, if it’s hers and if she can sit there. She hasn’t had it long enough to remember it. Only the very- long- term memory is functioning. Morris is sitting in the chair beside her, is always sitting in the chair beside her. His is electrically powered, tips back, is upholstered in orange tapestry. He was stout once and, with his square face, mischievous dark eyes, dark hair combed over, and mustache, resembled a rather better- looking Oliver Hardy, and was just as likely to suffer fools gladly. He’s mellowed. He appears to have shrunk, in all dimensions.
 
I’ve known Morris and Nancy for twenty- two years. When I first met them, brought home by Chris from university, I thought them old- fashioned, thrifty (furnishings and appliances had remained unchanged over de cades), sociable, hardworking, right- wing. They were Daily Mail readers, natural conservatives, but generous about our student leftiness. I don’t recall anything much in the way of ideological standoff. They were all hospitality, bailed us out when we got into financial hot water, let us stay with them on an indefinite basis when work plans went awry. Despite finding our postgraduate ideas about office jobs and steady security highly provoking (we didn’t fancy either of these much), they were nothing but kind. Kind but unforthcoming, opinion withheld. This has been a pattern in our relationships.
 
Nancy and Morris moved here with the rest of us this summer. We have a lot of latitude in where we live. Latitude and longitude. Chris is an internationally known- in- his- own- niche expert on a specific use of new technology, and he consults widely, mostly from his home office, though there are bouts of meetings and flying. We have two teenage girls— Millie, sixteen, who’s tall and dark like her mother, and Caitlin, fourteen, who shares her father’s ash- blond coloring— and a boy called Jack, ten, a senior at primary school, tall and lanky and Italianate, with a scruffy dark shock of hair.
 
Moving, it turns out, isn’t good for Alzheimer’s patients. Leaving behind the familiar, having to adapt to the new. Nancy’s disorientation is ongoing. “I don’t know where I am,” she sobs, “I don’t know what I’m supposed to be doing.”
 
I’ve been reading about memory. In cases of transient global amnesia (total but temporary memory loss), people ask over and over where they are and what they should do, how they got there, what they should do, what should they do now? Doing is a big preoccupation. They don’t ask what might seem to be the obvious question: Who am I? That doesn’t seem to be a question the self asks of the self. Instead, it looks for clues from context: where, how, what.
 
Chris and I have different responses to her anxiety. He takes her hand and is tender, explaining that they weren’t coping, she and his father, and have come to live with us. I go for a jollier approach. “Well, lucky for you you’re retired now and you can sit in this chair by the fire and eat biscuits and watch the afternoon film on the telly,” I say. “Not like poor old me, I’ve got washing to see to, dogs to walk and vacuuming, the dinner to sort out, and you should see Jack’s bedroom.” Jack is proving dedicated to the acquisition of stuff, particularly electronic stuff (gadgets, dead laptops), as well as guns, swords, and lighters. Sometimes I worry about where these interests might lead.
 
“Oh, poor you, having to do all that,” Nancy says, fleetingly lucid, playing along, and I’m embarrassed at being caught out talking to her in this nice- nurse fashion. But the moment passes and she’s back at the window. “Look at all that water.” Her voice is astonished.
 
“Yes. We live here, out on the peninsula; the sea’s all around us. Do you remember coming here with us to live? We came last month. Do you remember?”
 
“Edinburgh,” she says under her breath.
 
“You used to live in Edinburgh, years ago. But then you moved up to Speyside, near our old house. Do you remember the bungalow? By the river?” She looks blank. “And now you live here, with us.”
 
She looks at me, grim- faced. “That’s all very well, but they laugh at me, you know. Not you, I’m not talking about you, but the others. They look me up and down in the street and I can see that they’re thinking, Who the hell does she think she is?” Paranoia, an Alzheimer’s marker, is just beginning to get its grip on her. But she’s been lovely to the children all summer, which is reassuring. Her face lights up when they go into her sitting room. She pats her knee, like she used to; Millie’s five foot ten and can’t help laughing. “Now come and tell me all about it,” Nancy says. About what, she doesn’t specify. The girls are good with her, as Morris is always telling me. They’re patient, tolerant, don’t rise to verbal bait. They do things at Granny’s pace, taking her arm in theirs. “Come on, Gran. Let’s go and make Granddad some tea,” talking her through the operation step by step. “Put the tea bags in the pot now. In the pot, not the mug. That’s it. Right. Hot water next, can you manage the kettle okay? That’s the kettle. Yes. Here, let me.”
 
Morris prefers television to conversation, or indeed anything, and it’s been this way for a long time. Depressed and immobile, he is master of the remote and flicks between channels with a desperate air. It’s like he can’t look away. Things are too awful in his present to contemplate them squarely. Because he’s so focused on his television day, Nancy’s life is frequently lonely. She can’t follow a television program any longer. She’s more interested in being with me, because— when running the house hold, at least— I appear to be doing things. She’s less keen on me when I’m writing or reading. “The men just sit there,” she tells me scornfully, unable to distinguish between one kind of sitting and another: one at his desk on his laptop and phone, consulting and earning, and the other in the armchair next to her, absorbed fifteen hours a day by the flickering screen. She follows me around. She wonders half a dozen times a day where the friends are, and if they are coming.
 
“I don’t want the friends to know I’ve been ill,” she says, as we pick tomatoes in the green house. She eats the ones she picks or puts them slyly in her pocket, thinking I haven’t seen. Or just picks the dried- out leaves from the plants and puts those in the basket, smoothing them carefully. Then she takes them out again. “I don’t think these are ready,” she’ll tell me, trying to fix them back on the trusses.
 
The friends— imaginary friends— visit us sometimes, and she has days when she worries about how they’ll get here and how they’ll get home. In truth, her real friends have long deserted her, had deserted the two of them long before their move north. Desertion is a strong word; the truth is the process wasn’t so premeditated— it was a more gradual loss of attentiveness, a social slippage, the kind that happens when people get sick and have little to talk about other than their problems. Three from their old circle telephone from time to time, but it’s us they want to speak to, for reports.
 
 “I need to say good- bye,” Nancy insists, twisting her handkerchief. “I need to see the friends off.”
 
“Don’t worry,” Chris says, trying to ease her agitation.
 
“They’ve gone already. I saw them leave earlier.” And then, seeing her expression, he adds, “But they said to tell you they’d had a lovely day.”
 
“Gone already? But they didn’t say good- bye.”
 
“They did, don’t you remember? I think you might have been asleep.”
 
“They haven’t gone.”
 
“They have. I saw them; they left on the bus.”
 
She looks indignant, draws her shoulders up tight. “They didn’t come on a bus.
 
She appears to be having hallucinations. These are new, have arrived quite abruptly, and it occurs to me that our moving her here has aggravated the decline somehow, has accelerated it. Guilt is something I’m going to get used to, but for now it’s fresh and new. I take Nancy into the drawing room and we look through a stack of interiors magazines, me commenting and Nancy cooing. My laptop’s open on the table, and my attention is 80 percent diverted while I trawl the Internet for answers. Temporal lobe damage, it seems, can cause autobiographical hallucinations. Does she see the friends striding toward her across the lawn, looking just as they did twenty years ago or more?
 
Sometimes I think I can see them myself. The house doesn’t feel haunted— some big old houses do, but this one doesn’t— though there have been sightings, I’m told, in years past, of Victorians paused on the stairs, their eyes oblivious to the present. The first day we were here and went to the pub for supper, a fisherman propping up the bar asked how we weregetting on with the spooks. I haven’t seen anything or heard spectral footsteps, but the whole property is soaked in what I can only describe as pastfulness. It’s pastful, and sometimes, even though I know it’s just this, I’ve half believed there are women in rustling silk frocks in that part of the wood that was once the rose garden, have half heard brief melodious laughter in the paddock that was once a tennis court. Who are these people, the friends Nancy talks about? It’s occurred to me that the altered perceptions of Alzheimer’s might allow people to see ghosts.
 

From the Hardcover edition.

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Reading Group Guide

1. 1. Did Andrea and Chris have any real choice when they offered to take Nancy and Morris into their home? Where would another choice have led the family as a whole?
 
2. On what basis does the author rationalize the choice she's made to care for Nancy herself? Is her reasoning sound, or based on idealism and ignorance?
 
3. To what extent does the romantic setting - the landscape surrounding the house, and the beauty of the house itself – become metaphorical and emblematic of the progress of the story?
 
4. How do Nancy's and the author's 'journeys' (in terms of mood and state of mind) come to mirror one another?
 
5. Why do the other characters, particularly the author's husband and children, play so small a part in the book?
 
6. What's Morris's role in the deterioration of Nancy's dementia?
 
7. What's the turning point in the story, and why? When does it become clear that the experiment isn't going to work?
 
8. How successful is the author in explaining how a disease can affect a personality? Were you convinced that, as the author comes to believe, memory is the same thing as identity, and that 'self' is a biological entity?
 
9. Can the author's getting aggressive and indifferent with Nancy be justified? And if so, how?
 
10. At the end of the book, when change comes, do Andrea and Chris make the right decision for Morris and Nancy?  Should they have taken this course of action at the beginning?
 
 
 
 

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Customer Reviews

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( 9 )
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  • Anonymous

    Posted November 7, 2012

    An Honest Account

    I found this to be an honest and well-written account of one family's struggle to provide caregiving to elder parents: one stuck in a wheelchair; the other suffering from Alzheimer's. It also interspersed data and information about Alzheimer's and what the medical profession does and does not know about this disease in a way that is very clear and understandable. If you are faced with providing care in this realm, I recommend this book as a way to get grounded.

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  • Posted April 2, 2011

    Just what I was looking for.

    Nothing hidden in this story of a family's struggle to cope with aging relatives who are declining into a kind of non existence. Fear,hopelessness and amazing courage all on the same page. The author also presents some well researched up to date information for those caring for family members with alzheimers both in the UK and the USA. Very happy I chose this book over the many others available.

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  • Posted March 31, 2011

    This book, above any others I have read, fed my soul

    As a caregiver of an early onset Alzheimers' person going on 18 years, this book spoke to me. Because of the raw emotion conveyed in this book, I knew that I was not alone in my feelings of exasperation, frustration, anger, and depression and the wild cycle of emotions that one feels dealing with an Alzheimers' person, especially in the latter stages. Many books tell a story but don't really give a window on the disease like this one does. I needed to know that I was still a good caregiver even though I would lose my temper time and time again! It validates each day's "new normal" as one adjusts to the ever changing behaviors.
    var

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  • Anonymous

    Posted December 6, 2010

    Well written, informative and entertaining!

    Andrea Gillies is wonderfully descriptive of her surroundings and life with her aging in-laws and family. The tale is interspersed with scientific information on Alzheimer's and it's progression. She is wonderfully open about her feelings and struggles in coping with her mother-in-law's illness and father-in-law's denial. I found her experience helpful in my own situation. I wished that the book did not have to end.

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    Posted September 17, 2011

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    Posted May 28, 2011

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    Posted March 27, 2011

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