Keeper, by Andrea Gillies, is a book that stays with you. Not only the story but the person, the writer herself. By the book's end I felt like I knew this author, that if we met over coffee (or, in her case tea; she's from the UK) we would have plenty to talk about. Even better, I felt that if we weren't talking, the silence would not be awkward.
Originally published in the UK, Keeper won the inaugural Wellcome Trust Book Prize 2009 honoring science writing in popular literature, and the 2010 Orwell Prize. But the inner beauty of this book, which is about becoming a caregiver for her mother-in-law, Nancy, who is afflicated with Alzheimer's, is that the author's style makes us feel a part of her life. We also learn - a lot. Gillies, who lives in St. Andrews, Scotland, intersperses science with story; details about the disease of Alzheimer's, as they mirror the decline of her mother-in-law, and how the decline rattles the family. We are compelled by the narrative, pulled in and consumed, much as Gillies is in the process of caring. The unexpected benefit is how it enables the reader to feel less alone in the process of taking care of another (caregivers will understand this). I attribute this to the author's honesty, and her promise to the reader to tell it all. The American edition of Keeper: One House, Three Generations and a Journey Into Alzheimer's, was recently published by Broadway Books, and has received starred reviews from Publisher's Weekly, Booklist and Kirkus Reviews.
On a related note, I had the pleasure of interviewing Andrea Gillies for The Writer's [Inner] Journey, about her writing process. I wanted to interview Andrea for this blog to give readers a glimpse into her view about being a caregiver, and the integrated process of writing the book.
Meredith: What was the single most important thing you needed to remember to keep focused while you were caring for your mother-in-law in her chronic and debilitating state of need. How did you maintain your center--even if you might have felt like you were losing yourself?
ANDREA: The short answer is that I didn't keep focused and maintain my center.
Caregiving is like swimming a long distance. It's important to keep moving. You don't think about how to swim or about yourself particularly. If you don't keep moving your arms and legs you will sink pretty fast. There were times when caregiving - the physical act of it, 24 hours a day, always on duty, always on call - felt as if it were obliterating my own identity. Those were the crisis points. Family was the key saving grace: the love of my husband and children, and interacting with them in the old way.
Writing helped. Writing is all about identity, about self-expression, and was vital in providing continuity, even though I struggled to concentrate on the narrative I was supposed to be producing. Pretty soon I abandoned creative and imaginative work for a more direct form of self-expression, concentrating on writing the diary of my days with Nancy, the conversations we'd had. To further bolster my idea of myself I began researching Alzheimer's disease and writing the material that became those chapters of the book. Using my brain in this quite stringent and challenging way was, for me, a necessary counterpoint to Nancy's world of failing sensibility. She was losing the ability not only to remember, but to imagine. She couldn't any longer connect the parts of the brain that allow us to plan, imagine or decide. The connections were being steadily destroyed. Looking after somebody who can no longer think in the usual sense of the word, it became vital that I used my healthy brain and exploited my connectivity as much as I could for as often as I was able. There was an astonishing, dizzying sense of freedom and of privilege, in being able to do this thing that we all take so much for granted, and that had been denied my mother-in-law.
Meredith: What did you learn about yourself in the process of being a caregiver? What belief about you, about the disease, about your family had to go? And what did you hold onto stronger than ever?
ANDREA: I learned things about myself that I still value, and I learned things that didn't reflect so well on me. Towards the end of the experience, when Nancy became hostile, I realized that I was becoming less attentive to her and less giving of myself, as if her hostility meant something personal, when of course it wasn't that at all - it was the disease invading the emotional part of her brain. I realized that I needed her to be grateful to me for my sacrifice. I wasn't proud of that.
I learned that my mental life is what defines me. I learned to be profoundly grateful for it. I learned to be profoundly grateful for the ordinary human awareness of my place in the world, my place on the timeline, roaming back and forth from past to future, which is how humans operate, even in trivial ways, every moment of the day.
I learned that we can't have souls, or rather not in the way that I'd always assumed. I'd always thought of a soul - of my soul - as the essence of my conscious self, the Me that is known best and most intimately by me, but of course it's the conscious self that is whittled and compromised and finally obliterated by dementia, and what are we saying, that Nancy lost her soul as well as her self? That won't stand. Alzheimer's showed me that if we survive after death as anything but a sort of non-conscious "soul pollen", released back into the fertile universe, returning to our state of being as we were before birth, it must be as someone unknown to us, because that person exists elsewhere than in the consciousness. Which is a hard thing to get your head around but it became absolutely blindingly obvious, watching Nancy's sense of self pare away and diminish and finally disappear altogether.
I learned to be grateful for every day of my life that I have in good health.
