Hard-Won Advice in Books on Aging and Elder Care
By Ron Lieber
Longevity is generally better than its alternative. But when the body or especially the mind wears out, caring for yourself or finding someone else to do it for you can impoverish you in short order.
We fail to plan for it at our peril. So when it seemed that Republicans in Washington were close to passing legislation that could fundamentally change Medicaid, I wrote five straight columns about the program. Already, the majority of Americans need Medicaid to pay for at least some of their nursing home costs or care at home because they’ve run out of money. Proposed caps on Medicaid, which have not come to pass for now, had the potential to cause enormous problems.
In the wake of those articles, you wrote in, hundreds of you, with harrowing stories and hard-won advice, more of which I intend to present in future columns. But a smaller number of people wrote in unprompted to assign me homework — books that they found useful as they were navigating their own changing conditions or those of spouses, close friends or other family members.
This week, I read all four books that came up at least twice in your correspondence. I don’t recommend you do the same, for if you’re more empathetic than average or prone to anxiety, you’ll finish the reading sprint, as I did, emotionally wrung out and worried sick.
Still, these books are all in their own way utterly essential reading. Few of us are prepared for the financial and emotional complexities of managing the last several years of our lives. But as we live longer, drain what may prove to be inadequate retirement savings and lean harder on already strained government programs, we’ll probably find ourselves facing ever more challenging questions and unfortunate compromises.
We may as well know what’s coming. Here’s what I learned.
“Being Mortal,” by Atul Gawande
I started here, with this book by a New Yorker writer and physician who aims to help readers avoid what he calls a “warehoused oblivion,” even if none of us will win the ultimate battle.
The book is a good introductory text in part because of the sobering statistics. By age 85, 40 percent of people have some form of dementia. There are 350,000 falls each year that lead to broken hips. Once you’ve got a fracture there, there’s a 40 percent chance you’ll end up in a nursing home and a 20 percent chance you’ll never walk again.
A good geriatrician, one hopes, will school you in stability to lessen the chance of taking a spill. But good luck finding one, since their numbers have declined even as studies show that people do better over all under their care. Think your family will be there to steady you or at least check in? According to Dr. Gawande, half of the very old among us live without a spouse, and we’re having fewer children than ever before.
He writes movingly of his own father’s death, and I felt the lump rising in my throat five times over 263 pages. But it is the chapter titled “Letting Go” that I found most useful. There, he discusses the powerful effect of frequent, concerted conversations about goals and wishes at the end of life — not just bland, advanced medical directives in writing but continuing talks out loud.
“It is not death that the very old tell me they fear,” he writes. “It is what happens short of death.” But we don’t think about it enough, and we talk about it even less. Having read this book, I won’t make that mistake or let anyone close to me make it either.
“The 36-Hour Day,” by Nancy L. Mace and Peter V. Rabins
The title is a sympathetic nod to what it feels like to care for someone with Alzheimer’s, other dementias or memory loss, and it could take nearly that long to read this book and absorb.
Still, its value is in its encyclopedic nature, including detours into necessary but often uncomfortable topics like adult diapering and masturbation. These authors have clearly heard and seen it all.
The tips in Chapter 16 for people shopping for long-term care residences of various sorts are particularly comprehensive. You’ll finish thinking that this is a selection process that shouldn’t happen within 24 hours of a hospital discharge but should instead unfold over weeks, and you’ll be right.
“A Bittersweet Season,” by Jane Gross
The reward for living a reasonably long life, according to Jane Gross’s mother, was getting to “rot to death” rather than merely dying. As a physician Ms. Gross quotes later in her book confirms, this “inching toward oblivion” is no longer bad luck but a “generalizable phenomenon.”
With that bit of foreboding as a baseline, Ms. Gross takes us on a no-holds-barred tour through the years that she and her brother spent caring for their late mother. The author, a former New York Times reporter whom I’ve never met save for a few encounters on social media, is unafraid to admit all the mistakes she made out of sheer ignorance and how often even the most high-functioning adult children simply do not know what they do not know.
The book explains the financial side of her mother’s care — including her eventual qualification for Medicaid — plain as day. I also picked up even more tips for a list I’ll eventually publish of questions to ask before picking a nursing home or assisted living facility.
As someone with a sister and two sisters-in-law, I found the book most useful as a sort of post-mortem meditation on gender. Women often lose out twice or more in the aging derby, first when they take on disproportionate responsibility for their aging parents and then again when they outlive their spouses in old age. Ms. Gross’s raw honesty about her feelings about all of this — often fair and sometimes not, by her own admission — makes this book mandatory reading for any man with a sister who wants to be thoughtful about planning for aging parents.
“Being My Mom’s Mom,” by Loretta Anne Woodward Veney
There is no sugarcoating the number of physical and emotional challenges that come with aging, so it’s clear why Ms. Veney’s upbeat memoir of the years she has spent caring for her mother, Doris Woodward, who has dementia, is so appealing.
Ms. Veney’s steadfast focus on her own mental health is something others will want to mimic. Her aim is tranquillity and patience, with an emphasis on reprogramming her reactions, like her frustration with being late.
She’s also practical about doing whatever works to make her mother happy. While Ms. Woodward had no taste for McDonald’s in her younger years, she found it soothing for whatever reason once her decline began. Often, the two of them would stay there for hours.
Finally, Ms. Veney devotes a chapter to humor. Laughing with someone afflicted with dementia can, in her view, be life-affirming in a period when joy may be elusive. So we hear of her mother’s confusion over her new memory foam slippers. How was something on her feet going to help her brain? she wondered.
At the end of one particularly challenging day out, the pair stopped for dessert. When they arrived back at her mother’s group home where she had lived for more than a year, she did not recognize it though she did thank her daughter for the treat. “I just don’t remember where I live,” Ms. Woodward told her daughter. “But of course I remember the ice cream.”