July 2011

Barbara J. King


“To the Families and Caregivers of Dementia Patients Everywhere”

For a year, the cat book sat unopened on my shelf. Making Rounds with Oscar, by the geriatrician David Dosa, grew out of an essay he wrote for the New England Journal of Medicine about a resident cat in a Rhode Island nursing home who could predict the coming death of the home’s patients. Oscar repeatedly would curl up at the side of a very sick man or woman and stay, with only brief breaks, until the time of that person’s passing. His acuity was such that the vigil never lasted long; the nursing-home staff and even the families began to treat his behavior as prophetic of imminent death.

How could I, cat-rescuer and writer-on-animal-cognition, fail to be piqued by such a cat? When Dosa published a book about Oscar, I thought, sure, I’ll buy it.

Buy it, yes; read it, no. Hyperion, Dosa’s publisher, pushed the heart-warming animal-tale angle, and I do have my quota for those. (The book’s subtitle is The Extraordinary Gift of an Ordinary Cat.)

Last month, though, I began a vigil of my own, first at the hospital and then, wearing that “deer-in-the-headlights-look of a new family” that Dosa describes, at a nursing home. My mother was rushed into emergency surgery on June 2; confounding complications, and wild swings in her physical and mental condition, have kept her in need of constant care since then.   

Delirium has been the hardest part, not least for my mother herself. This one-word technical term stands in, Dosa explains, for extreme confusion, a confusion that may be temporary (or not) as a result of anesthesia or illness, and in my case replays in my head, in my mother’s voice, at odd moments during the day. Her fantastic questions, fevered ideas, stubborn thoughts and random announcements pepper our talks: some tenuously thread back to reality, and others, though I tend to seek that thread hard, really just don’t.

Suddenly, the Oscar book called to me from the shelf. A little warming of the heart wouldn’t be so bad, I thought. I opened the volume to its dedication page: To the families and caregivers of dementia patients everywhere. My reaction was outsized: Dosa writes directly to me, in just the thunder-in-my-heart way it inevitably feels that Springsteen sings directly to me at concerts.  

Through the portal of that dedication -- though it applies far more to families doing round-the-clock heroic care than to me, I know -- I discovered a gem of a book. Trying to understand Oscar’s actions, Dosa met with families of patients who had died under Oscar’s watchful eye. Through those interviews, the book conveys the dark art of aging. Yes, the usual white flags of surrender are offered, about making the best of it all -- the little odes to living in the moment and to savoring the small victory. I’m not cynical about these but that’s only because Dosa allows them to snuggle up right next to the hard stuff, the grim physical decay, the steep slope of lost mental function, the sadness that wells up in hearts and eyes.

Dosa’s voice advocates relentlessly but gently (never pressing its will) for letting go -- and speaks of the cost of prolonging life, for those prolonged. One elderly couple, patients of Dosa’s he calls the Rubensteins in the book, had met in a concentration camp. Fiercely protective, the husband of the pair wanted everything done for his wife, even as she suffered with Alzheimer’s and physical ailment after ailment. “As she became increasingly short of breath,” Dosa writes, “I sat with Frank, asking him to consider options for her care. I told him that if things continued, she would require a tube to help her breathe, something she had once told me in the office that she would not want. I suggested to him that it was okay to consider letting her go. We would take care of her and ensure that she did not die in pain. My entreaties fell on deaf ears.”

Sixty-three years to the day since they’d met in that terrible camp, Ruth screamed when Frank visited her in the nursing home. She no longer knew him, and he terrified her.  

I read Making the Rounds with Oscar shortly after I began nightly forays into a thicker book, The Bittersweet Season: Caring for our Aging Parents -- and Ourselves, by former columnist (and current blogger) for The New York Times, Jane Gross. In this case, it wasn’t the book’s dedication but a text-embedded passage that spoke to me. Describing an early experience in installing her mother in assisted living, which she argues is on average less effective for the sick elderly than a well-run nursing home, she notes:

Lots of families must be making the same mistake, which explains the traffic jam of ambulances outside assisted living facilities everywhere and, in the parking lots, the daughters slumped, weeping, in their cars.

The daughters -- it’s true. We meet in the halls (whether of a nursing home or assisted-living place); exchange hard-won data via phone and emails; make rueful jokes together; and slowly trust each other with the leaking-out of our fears, even more than our tears.

Gross aims, in The Bittersweet Season, to save all of us daughters (and sons too) from committing grave errors of elder-care. I’m using it as an encyclopedia, dipping in and out, cruising the topics. I know now how to fortify myself against those savvy marketers of assisted living who “ask no probing questions and maybe even think they are being kind when they accept borderline residents.” I’ve learned about how a person -- a mentally competent person -- may best take charge of the end of her life.

This end-of-life part? It’s not about my mother -- well, it might be, if she ever makes that decision. But it fascinates my husband and me, for us, later. In our 60s and 50s respectively, we’re healthy (sort of, anyway, in my case) and massively comforted to learn about VSED, short for “voluntarily stopping eating and drinking.”  

Call me macabre, but I’m downright jazzed about VSED. It’s not painful. Gross knows this from her doctor discussions, and from watching her own mother’s death: “As the days passed, I watched the hands of the clock from my perch in a reclining chair in the corner of my mother’s room… She soon became a curiosity, as people stood in her doorway to watch the old lady who would not die. I accused the aides of sneaking her ice chips when my back was turned.” On the thirteenth day, Gross’s mother did die; that’s in fact about average for VSED.

With VSED, one’s electrolytes go up, the kidneys slow down. The extremities go cold and gray, breathing goes irregular, and the pulse goes thready. And eventually one’s heart… no longer goes at all. VSED is legal. “In other words,” Gross remarks, “they can’t stop you from VSED in a nursing home, but they can make matters uncomfortable and difficult by dissuasion or lack of cooperation.” Fair warning, but as I see it, it’s a ticket to ride, ride right out of where one doesn’t want to be.  

For now though, back to Oscar. He’s pretty remarkable. When Ruth Rubenstein became frightened of her husband, he stopped his visits. He died, and it was Oscar who sat with Ruth as she was dying. If two residents neared death at about the same time, Oscar stayed with one till the end, then raced on to the next. As Dosa says, whether the cat’s abilities can be explained by the smell of ketones as they released from a dying body, or by some faculty of hyper-empathy, or some combination of both, is a matter of scientific interest but not the matter of most interest.

I feel that my mother’s death could be years away -- or a week. (At one point in the hospital we were told 36 hours at most.) Uncertainty about the timing of death is true for us all. But to be nursing-home-bound, prone to medical instability, with a family of one child engaged in figuring out what to do? It can only help when that child sucks in some extra knowledge -- and comfort. To Jane Gross, David Dosa, and yes to Oscar, thanks, from my mother and me, for the lifelines.

-- Barbara J. King blogs about animals and books at http://www.barbarajking.com/blog.htm