Judith Harway, author of: “Sundown: A Daughter’s Memoir of Alzheimer’s Care,” shares her thoughts with Alzheimers.net on the disease and the time she spent caring for her mother through Alzheimer’s. Learn more from her memoir of the time.
After a recent presentation about “Sundown: A Daughter’s Memoir of Alzheimer’s Care,” a member of the audience asked if I had consciously taken notes about my mother’s cognitive deterioration with the intention of writing a book after her death. The question caught me off guard: though I’m a writer and a teacher of writing, I would never have looked at my mother’s illness and thought, “Hey, this could lead to a good opportunity for publication!”
My role as Mom’s caregiver was a source of unrelenting sorrow, stress, frustration and regret — along with gratitude that, of all the parents in the world, fate or luck or chance had given me to my endlessly interesting, loving and complicated mother. If I had any intention from the start at all, it was simply to write down the highest or lowest moments — moments of particular heartbreak or hilarity — in order to share them with my sister when we talked at the end of each day.
No family, no matter how loving, can be prepared for the harsh reality of Alzheimer’s. I have attended a number of funerals recently at which my contemporaries eulogize their parents with the observation that Alzheimer’s causes you to lose a loved one several times over. Believe me, I know what they mean: we lost Mom again and again over a period of nearly ten years. With the grace of hindsight, I now understand that all of our mistakes and missteps, grievances and grief, were weirdly normal: like millions of other families, there was nothing we could to to protect my mother from her unquiet fate. Still, I struggle to forgive myself for everything I could not do as my father found it impossible to continue caring for Mom at home, as we struggled to evaluate medical advice that did not take dementia into account, as Alzheimer’s immersed my kind and vivacious mother in an abyss of delusions and paranoia.
Women bear a double burden with Alzheimer’s: one in six women in the United States eventually develops the disease (as opposed to one in ten men), and there are strong genetic indicators for who will be afflicted in the next generation; the average caregiver is a woman in her 40’s-50’s who works full-time outside the home. That sentence pretty much sums up my story, so after my mother’s death, I wrote the book that I wish had existed to accompany me on the journey through her last days: a book that could validate my experience as a daughter and caregiver by squarely facing the helplessness and hopes inherent in those roles, by acknowledging the importance of laughter in the face of loss, by encouraging advocacy for loved ones who no longer have a voice, and by illuminating the failures of the American healthcare system to deal with this growing crisis.
Bleak as the statistics are, they bring me back to what sustains me today: because my way of grieving my mother’s death was by writing, her story continues to touch the lives of other families. No review or blurb could mean as much to me as emails like these from readers of “Sundown…”
Particularly this, from a nurse who works with an agency my family relied upon for assistance through the long, dark time of our mother’s decline:
“Your prose is poetry and absolutely beautiful. Thank you for sharing your experience with others via this book. I’ve already promised it to two friends who are caring for mothers with dementia, and professionally I want everyone in our office to read it!”
If there is one thing that I hope to communicate to readers of “Sundown,” and to all families coping with Alzheimer’s, it is this: you are not alone. Reach out to the Alzheimer’s Association, read and listen to the stories of others and commiserate with friends. By all means, take notes on both the funniest and saddest moments of your journey as a caregiver, because memories will help you and your family on your next journey, your journey towards healing.
It is the last spring of my mother’s life, although I do not know that as we drive together down Milwaukee’s lakefront on a perfect afternoon. The spring sun lavishes its gold touch on the water, gilds the sweep of Bradford Beach, steeps budding trees along the bluffs in honeyed light. Because Mom always forgets to bring along her heavy, wraparound sunglasses these days, she’s wearing the cheap pair I keep in my glove compartment, and still, she covers her eyes beneath both hands.
“Look, Mom,” I say, pointing out at the beach, “There are so many ducks!” She nods her head vaguely. The sun is a burden to her. Though I’m driving in traffic, I know she takes pleasure in watching birds so I pull at her arm. “They’re just off on the left, Mom. Look.” She turns toward me, nodding again, and I realize that she is keeping her eyes firmly shut.
My mother hardly ever goes outside anymore. When I come in to visit, she tells me about all the places she wants me to take her: shopping, to the movies, back to New York just one more time, to Cape Cod, out for a fancy dinner, to visit her sister (who died 20 years ago)… A few of her wishes would be easy to grant, so I show up at least once a week with an outing in mind. “Go ahead!” my father nearly shouts at me, crazy for a few moments of respite. My mother proves all but immovable.
Today, after lots of cajoling, I manage to guide her to my car, stow her walker in back, dig out that extra pair of dark glasses, and, take her for a drive. I imagine my father closing the door behind us with a deep sigh. He cannot acknowledge his need for a break from the relentless demands of caregiving. Though I live ten blocks from my parents and they are registered with two eldercare agencies, he refuses assistance as a point of pride: he does not need help. Each week, if I am to give him a break, I must convince him that nothing in the world would make me happier than performing this charade once again, in which I insist that my life will be incomplete if I do not take my mother out for a drive right now, despite my impossibly full schedule and all of Mom’s dithering protestations. He finally relents. It seldom works out well.
My mother is uncomfortable and fidgety in my car. “Where’s Norman?” she asks, for the hundredth time. “He had a few things to take care of,” I answer, “so let’s just enjoy this drive, you and me.” “Where’s Norman?” “We’ll go home to him in a few minutes.” “Didn’t Norman come with us?” By this point, it’s second nature to cycle through the same meaningless patterns of conversation, and I have no idea how desperately I will repeat such empty sentences in the months to come. I have no idea how impossible it will become to take her anywhere. I have no idea what lies ahead.
Though my mother has had a diagnosis of Alzheimer’s and dementia for the better part of a decade, it bugs me that she keeps her eyes closed so often lately. It’s a beautiful day, damn it, and I set aside these hours specifically to share it with her. She’s the one, after all, who taught my sister and me to look closely, to live appreciatively. She’s the one who loved naming flowers and birds, who never missed a chance to exclaim about the wonders of nature. At this moment it matters to me that she should open her eyes and engage with the world outside.
I catch sight of a stand of lilacs to the right overhanging the tennis courts. “Look, Mom,” my voice is rising, “Look at the lilacs!” In truth, the lilacs are kind of ratty, but I really, really want her to open her eyes and notice something. “Look at those lilacs — they’re beautiful!”
Eyes closed, Mom intones, “Beautiful. When lilacs last in the dooryard bloom’d… That’s a poem about Lincoln’s death. Do you know it?”
I’m delighted by this old, deep memory surfacing: as a girl, my mother learned many classic poems by heart and held them dear. The sound track of my own childhood memories is rich with the sweet lilt of her voice reciting Keats and Wordsworth, then rising into her favorite turn-of-the-century parlor songs as my sister and I drowsed on our pillows waiting for her goodnight kisses. How much more can she recall now, I wonder? “Mom,” I say, “I can’t remember who wrote it. Can you?”
“Somebody or other. Maybe Robert Browning.”
It’s not Browning, of course, but I’m reluctant to correct her. Though her love of poetry and her gift for storytelling have a good deal to do with the fact that I am a writer and English professor today, I swallow Whitman’s name. It is enough that she remembered the first line. I slowly finish the tercet as she mumbles along on this perfect afternoon:
When lilacs last in the dooryard bloom’d,
And the great star early droop’d in the western sky
in the night,
I mourn’d, and yet shall mourn with ever-returning spring.
Have you had similar experiences as a caregiver for a parent with Alzheimer’s? Share your stories with us in the comments below.
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