Title: Do Clouds Rest? Dementiadventures with Mom
Author: Michael Hicks
Year of Publication: 2017
Number of Pages: 111
Reviewed by Julie J. Nichols for the Association for Mormon Letters
So recently it’s still smarting like a bruise under the skin, my siblings and I removed our widowed mother from the house my father bought for her 35 years ago, located 120 miles away from any of us, and installed her in the memory care unit of an assisted living facility half a mile from my home. Her mind is far enough gone that she doesn’t really know where she is. “Oh, I’m staying here?” she says, when we bring her home from outings. “I have a room here? You’re leaving me here?” She assuredly knows she’s not home any more, and that everything is strange. The distress on her face is wrenching. We’re still working out a visiting schedule and a relationship with the facility’s staff. Logically, financially, and in regard to caregiving, it’s the best possible situation. But emotionally it’s traumatic for everyone.
We knew this was coming for months. I’ve read a number of books to try to understand my mother’s condition, trying to connect with others who’ve done the same thing, whose parents’ minds are disintegrating and who have had to make the same kind of decision regarding their living quarters and care. Among these are four in particular.
Learning to Speak Alzheimer’s, by Joanne Koenig Coste (Mariner Books 2004), a compassionate and detailed primer on the needs of patients with dementia, lays out five rules/principles for effective care: make the physical environment work; know that communication remains possible; focus on remaining skills; live in the patient’s world as behaviors change; and enrich the patient’s life. Coste gives hundreds of tips from the moment of diagnosis to the decision to leave the patient in outside care. My siblings and I have sought to incorporate these tips into our dealings with our mother since we first learned her diagnosis.
Memory’s Last Breath, by Gerda Saunders (Hachette Books 2017), is Saunders’s first-person attempt to come to terms with her own diagnosis. The former head of Gender Studies at the University of Utah, she labors courageously to preserve her life story here, interspersed with “field notes from my dementia,” records of mistakes she’s made, lapses she’s encountered, and resolutions she has come to as her condition has worsened. It’s admirable. Our mother couldn’t have written anything like it. But it demonstrates that even an educated, brilliant academic will have the same symptoms as any other person with dementia. It’s a devastating disease, tragic in its ravaging of memory, physical capacity, and what we consider common sense.
Tangles: A Story of Alzheimer’s, My Mother, and Me is a graphic memoir by Sarah Leavitt (Skyhorse Publishing 2012). Like Memory’s Last Breath, it tells the story of a unique woman’s life before dementia hits; chronicles the disease’s six years of slow (and then more rapid) progress; and illustrates the poignant moments the family endures as they help a beloved mother through her mind’s deterioration. I wept all the way through.
Finally, there is Do Clouds Rest? Dementiadventures with Mom, by Michael Hicks, a BYU music professor who brought his mother to an assisted living facility near where my own mother now lives. She resided there for eight months before her unexpected rapid decline and death. This book is different from the others in its size (much smaller—fragmentary, almost) and in its scope and purpose. It doesn’t purport to be a manual or a memoir. Instead, it’s a gently humorous record of the kinds of misspeaking and mishaps that beset those in cognitive decline. My sister loved it, because it reminded her so much of our mother, who is also in care in Utah Valley.
In his preface, Hicks says, “My artist mom lived her whole life in California. Well, almost. Two months before her eighty-eighth birthday my wife Pam and I made her move to Utah. Why? Her mind was cranking down…” (1) He explains that he determined to visit her every single day after she was moved to Jamestown, a long or a short visit, and every second or third day he would take her out on errands with him. Dementiadventures is a set of fifty-seven numbered notes he kept on post-its, chronicling their conversations and his observations during these visits.
Photos—of Mom’s drawings; her meticulously arranged vanity; the jumbled back seat of Hicks’s car, which his mother invariably remarked upon multiple times when they went out; Mom in the grocery store trying to make sense of signs and decorations; Mom in her final hospital bed; and others—give us a sense of how it all looked, not only to Hicks, but to his mother. Losing one’s mind is confusing and frightening, sometimes, and sometimes one has to resort to repetitive behaviors, or behaviors incomprehensible to others, in order to cope. The pictures show us how.
Each of the post-it notes is in present tense, and therefore immediate and personal. Many of them are funny—some apparently intentional, witticisms like the time Mom points to a T-shirt Hicks is wearing that says “Rick’s Restoration.” “’What does he restorate?’ ‘Antiques. Cars. All kinds of stuff.’ ‘Does he do people?’ ‘Nope.’ ‘Too bad.’” (Dementiadventure 15, p. 20).
But some are melancholy, poignant, indicative of the “cranking down” of Mom’s mind: “’Yesterday was the longest day of the year.’ ‘It was?’ ‘It was.’ ‘Well, I hope it was a good one, then. Because I don’t remember it’ (Dementiadventure 17, p. 23). And among the repetitive loops and funny-if-you-don’t-consider-what-it-means-about-her-mind gaps in perception that Hicks reports, surprising self-awarenesses pop up: “At Jamestown: Mom: This must be a really boring place. Me: Why? Mom: I can’t remember a thing I did today” (Dementiadventure 35a, p. 56).
Dementiadventure 40c is titled “My non-Mormon Mom Reviews Mormon General Conference”: “she went to the big-screen showing of General Conference this morning at Jamestown. Her one-word review: ‘Arduous.’ More: ‘They kept showing this movie all the time and there were all these people in it I didn’t know and they kept saying things I didn’t understand so I left’” (p. 69).
But along with the humor is unintentional hurt. Mom doesn’t remember that Hicks plays piano, that she’s ever heard him play. When he puts on a concert at Jamestown for the residents, she’s distressed to be seated in a place of honor and disoriented at the end, asking to be taken home (though Jamestown is home for her). He records her saying she’s only turned on her TV once since she came to Jamestown, though she doesn’t have a TV (Dementiadventure 40, p. 65). I found myself irritated with him after awhile for remarking such lapses, breaking the Learning to Speak Alzheimer’s rule that you need to get in the diseased person’s world, and not make much of such lapses. But they must have been new to him, and so infinitely worth noting.
Dementiadventures 50-57, and the diary entries and postscripts after, take Mom to the hospital for her final days. The end is mercifully quick. The grief is palpable. Hicks’s funeral speech is included as an epilogue, providing necessary background into Mom and Hicks’s relationship—necessary if we are to know Mom for what she was, rather than what the disease did to her. I almost wish it had been put first—in Tangles, the many frames at the beginning that show Leavitt’s mother in her prime emphasize the terribleness of her decline. But that wasn’t Hicks’s purpose. There’s affectionate laughter in the majority of these notes, and the funeral speech at the end is a loving last word.
Footnote after the 57th: “Being with my mom in her last months gave me a new reflex: when someone says, “I’ll never forget” such and such, I interrupt with, “Don’t ever say that” (98). Though the reason for this collection of “dementiadventures” seems to be to record the humor of his mother’s deteriorating mind, it has the same heart-wrenching effect as the other three longer books I read. There’s a whole library to be studied about dementia; it’s a world we’re seeing more and more of, a world that more and more of us need to become familiar with. We can’t hide from it, or hide it from ourselves. Dementiadventures adds a local Utah (only peripherally LDS) ingredient to the mix, a more personal and intimate lens to the picture. If you know someone who’s been diagnosed with Alzheimer’s or who has another form of dementia associated with age or disease, these books and others like them may not help you feel less sad, but they will no doubt help you feel less alone.