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

To C and the children,
And with love and gratitude to my family and friends

Contents

Cover

Title Page

Dedication

Introduction

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

Chapter 28

Chapter 29

Chapter 30

Chapter 31

Chapter 32

Additional Reading

Acknowledgments

About the Author

Copyright

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 the best
Are strange—nay, rather stranger than the rest.

—JOHN CLARE (C. 1840)

Introduction

You have to begin to lose your memory, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all. Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.

—L
UIS
B
UÑUEL

It is singular how soon we lose the impression of what ceases to be constantly before us. A year impairs, a luster obliterates. There is little distinct left without an effort of memory, then indeed the lights are rekindled for a moment—but who can be sure that the Imagination is not the torch-bearer?

—L
ORD
B
YRON

T
HE PROCESS OF WRITING THIS BOOK, THE PHYSICAL
act of putting it together from diaries, scribbled notes, books about the mind, and concentrated bouts of introspection, has proven an illuminating exercise for me, demonstrating just what it is that dementia takes away. (Answer: everything; every last thing we reassure ourselves that nothing could take away from us.) The way the brain works, the supercomputer folded modestly into every human head, marshaling its forces, making connections, prompting and synthesizing, is dazzling and extraordinary and yet seems every day perfectly unexceptional and ordinary to us. There’s nothing we take more for granted. In recording the decline of somebody with dementia, and seeing her preoccupations grow narrower and narrower, and her intellectual pathways block off, I’ve found myself preoccupied with unexpected things, more and wider things, my mind disappearing down all kinds of unforeseen alleys, which has been exhilarating but also poignant. I’m left feeling a profound gratitude to the life of the mind, how associative it is and how rich, in its leading on from one thing to another, into that whole interior landscape of yoked-together and often incongruous thoughts that adds up to a self. This book has turned out to be as much about the unraveling of a caregiver as it is about the person cared for, but its starting point was wanting to write about Alzheimer’s and about life with an Alzheimer’s sufferer, my mother-in-law, Nancy.

We spent many years looking after Nancy at one remove from us, a responsibility made more stressful by distance, and then at closer range—in a big Victorian house in a remote part of Scotland, with Nancy and her disabled husband, Morris, living with us and our three children. The house was not an ordinary one and, in a way I didn’t anticipate, became another character in the story. It was an imposing, drafty mansion on a wild, near-treeless headland. We moved there specifically to attempt an extended family; when that failed, we had little choice but to leave. The official gloss put upon this exit is of the “phases of life” sort: job done, time to go. The private verdict is soaked marrow-deep in defeat.

I’m aware that in many ways this is a story about privilege. We could afford (could convince the bank we could afford) the big house and the part-time help, and when push came to shove (and it did, literally), my in-laws could come up with the fees for a good nursing home. But there are monetary consequences to caregiving, above and beyond the obvious weekly bills, and there has been a real financial hangover that we’re still working through, brought on by months and years of having no choice but to put work second.

Well, so what
, you may be thinking.
You took in your husband’s parents. Boo-hoo. Big deal.
Across other, more populous continents, three-generation households are the norm, after all (the Asian three-generational photograph is lodged reprovingly in my brain), and they will likely become more commonplace here, as the care crisis bites harder. It’s pretty clear that it
will
bite. The world seems to be in the grip of a dementia epidemic. Here in Britain, there are 820,000 people who’ve been diagnosed with dementia, two-thirds of them women, and the figure is rising sharply. In the United States, it’s more than ten times that number. Of these, according to the Alzheimer’s Association, 5.3 million have Alzheimer’s disease. There are estimated to be more than 35 million dementia sufferers across the globe, with over 65 million forecast for 2030 and more than 115 million for 2050: the figures near doubling
every twenty years.
That’s why the phrase “dementia time bomb” is beginning to be used. The devastating extra sting of dementia is that, unlike heart disease and cancer, it doesn’t shorten life. It’s a cruelly lengthy business. The changes in the brain can begin twenty years before a formal diagnosis, and the average life expectancy afterward is eight years.

Alzheimer’s disease is only one of many varieties of dementia, though by far the commonest. Over 60 percent of diagnosed dementia sufferers have Alzheimer’s disease. Back in 2002, BBC News reported that more than 40 percent of UK home caregivers of someone with Alzheimer’s had been forced to give up work in order to look after the person. In the United States, 10 million people act as caregivers to someone with dementia and millions more offer support. About the same percentage of American caregivers are not employed, and two-thirds of those who can manage to hold down a job report major disruption to the workweek. I quote these statistics as a roundabout way of answering my own question: Why write this book at all? There were several reasons. One of these was to share in my own revelation, hard-earned, that Alzheimer’s isn’t just about memory loss; that
memory loss
isn’t just about memory loss, but leads to disintegration. I wanted also to kick the system ineffectually in the shins; to give a glimpse into the dementia abyss; to show that for every “client” in the statistics there are one, two, four, six others (aka the family) whose lives are blighted in addition; in short, to give a little insight into the reality that ensues from the apparently noble idea (the noble, and for the country’s financial bottom line, far preferable idea) that the elderly ill should stay at home whenever possible.

Question: Do governments understand just how dehumanizing Alzheimer’s is? (A rhetorical question. Answer: no, or they wouldn’t withhold good drug treatments or limit research programs on grounds of cost.) 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 alike. Medicaid will step in and pay for residence in a nursing home only if the ill person’s own assets have dwindled away almost to nothing, and it’s pretty much an identical situation in the United Kingdom. Once the money runs out, the ill person’s house is likely to be sold to pay for care, unless a spouse or dependent is still living in it. Even if American houses can be placed out of risk in the short term, certainly they are at risk after the owner with dementia has died, via
estate recovery
(the rebate of nursing home fees in arrears to Medicaid—a policy that’s pursued energetically in most states). Advice about loopholes in the system that allow a family to hang on to a loved one’s home long term has grown into an industry, and almost every American Web site that talks about costs and rights to do with dementia suggests consulting an attorney. It’s a system that’s good for lawyers: in other words, bad law.

There’s also a selfish answer to the why-write-the-book question. I’m one of those who have found work incompatible with caregiving, even work that I have always done at home, sitting at a table by a window, or slouched uncomfortably on a sofa, laptop at a precarious angle, mediating children’s interruptions—work that you might assume would be ideal in the circumstances. It’s more than economics in my case. Writing is more in the way of a compulsion. It may even be a psychiatric disorder. If days pass dryly—that is, without sentences being made and remade—I find that I begin to drift into the arena of the unwell. Throughout my years of caring for Nancy, the drive was there to produce something salable, but other than the occasional article, the content wouldn’t follow the impulse. Following an early career producing sensible nonfiction and then a long hiatus while having and raising children, I was supposed to be cutting loose and writing a novel—and, on the face of it, I was immensely productive, almost manically so. I wrote two and a half novels. I wrote them in a rush, thinking, I can make some money at this (almost a guarantee of failure). The two finished ones were bad, superficial, studded with frustrations like cloves in an orange. The half is still a half, stopped, stalled. The muse left me. She did it quite abruptly, though things had been sticky between us for a while. After that, all I could seem to write about with any passion or conviction was my mother-in-law. Writing about her was sustaining through the dark days of creative roadblock. It was, to be blunt, a way of not cracking up.

This might also be the moment to tell you that names in the account that follows have been changed. Nancy is beyond minding or even registering the fact that she’s the subject of what you might call an unauthorized biography, and changing names provides only a tissue-paper-thin layer of anonymity, but it feels right, nonetheless.

A lot of what follows is taken from unedited diaries, which accounts for the use of the present tense and also for the emotional rawness of some passages. While filling the diaries, I used some of the entries in a newspaper piece I wrote about Nancy. It was straightforward and at moments graphic about her problems (and ours), and this didn’t go down well with online commentators. Their chief complaint had to do with my having written intrusively about my mother-in-law without her consent. Even by then Nancy was long past the point of being able to consent to anything; she found the choice of Weetabix or cornflakes baffling enough. Intellectual competence aside, the argument remains that whatever the truth about rights, it’s in bad taste to write in such unsparing detail about another’s decline. The daughter of former British prime minister Margaret Thatcher has been pelted with rebukes since disclosing her mother’s dementia. Her critics insist that the disease should be “kept in the family,” which is only a short hop from suggesting that it’s stigmatizing and shameful. Tony Robinson, the actor who played Baldrick on the popular BBC show
Blackadder
, was accused of something similar when he let UK Channel 4 make a documentary about his mother’s last weeks. His response was robust: no, quite the opposite; he was proud of the program. There’s a public service element to allowing media access, even if it might appear to the viewer to be cloaked in voyeurism. Those of us who have loved ones embarked on the dementia journey—and it
is
a journey, with clearly defined stages—publicize the details of their decline not despite our love, but in large part because of it. In some cases, the love is shared with the nation at large. In the case of Ronald Reagan, the announcement of his Alzheimer’s disease by means of an open letter in 1994 (a poignant and brave last message that marked the end of his public life) prompted a whole new national surge of affection for the former U.S. president.

S
CIENCE STILL ISN’T
sure precisely what triggers Alzheimer’s, though things are moving so fast that the mystery may be solved by the time you get to read this. (In fact, the pattern in the last few years has been that they move fast and get nowhere much.) What’s uncontroversial is that Alzheimer’s brains show the presence of two weird and provocative things: (1) a wild overproduction of beta-amyloid, a naturally produced and usually soluble protein, contributing to sticky blobs called
plaques
and (2) the knotting and snagging of the tau protein that forms the “rungs” in the communication ladders within brain cells into
tangles.
The race is still on to determine what the definitive cause is.

An adult brain has about 100,000 million nerve cells, individual
neurons
that each look rather like the branching root of a tuber pulled out of the ground—tubers of different shapes according to flavor. A good analogy, put forward by the Oxford professor Susan Greenfield, is to think of the brain as the Amazon rain forest inside your head. In the Amazon rain forest’s 2.7 million square miles, she says, there are about 100,000 million trees. Imagine all that foliage condensed into the size of a cauliflower within your skull: 100,000 million tiny trees, making a dense neuron forest. Our memories and our thoughts travel through the forest as encoded electrical signals. The “roots” of the neuron are called
dendrites
(from the Greek for
treelike)
, and its stalk (trunk) is called an
axon.
The information comes in to the neuron via the dendrites, into the
soma
(cell body)—that’s the front door—and then goes out the back door, travels up the axon, along parallel lines of communication called
microtubules
, and out the other end at branches called
synaptic terminals.
This information moves, in tiny leaps, from axon to dendrite, from one neuron to the next. How does it do that? For a while there were two camps of conjecture, spark versus soup. The sparkers, who believed in an electrical leap, lost out in the end to the soupers, who thought that the constituency of the soup was key. The spaces at which the crossing is made are called
synapses
, though they’re more like ports than spaces—ports at which clusters of
neurotransmitters
are waiting as a chemical transport system. Subsequent research has shown that there are indeed electrical as well as chemical synapses in the brain, though the electrical ones are heavily outnumbered. The number of dendrites and synapses varies hugely according to the neuron’s function, but on average a neuron is thought to have around 7,000 synaptic terminals. Multiply that by 100,000 million and the mind begins to boggle.