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.
-Luis Buñuel
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?
-Lord Byron
The 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 house holds 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.
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