I’ve read a bunch of eldercare books over the last few months, but I think I’m finally done. This is my final review of that topic for a while, and we can conclude on an upbeat note. The last book, “A Bittersweet Season”, was a depressing story of all the mistakes the author made as she learned to care for her mother. It was also full of drama and family conflict, which helped illustrate the issues of eldercare but still takes a toll on the reader.
In contrast, “When The Time Comes” is a more optimistic survey of eldercare choices. Paula Span also writes for the New York Times blog “The New Old Age”, but she has a positive view of the aging process and eldercare. There’s still tension and family conflict, but she feels that the Baby Boomers and Medicare will solve the problems just like all the other generational trends we’ve created.
Paula Span wrote the book because of her personal experience in caring for her father. Instead of discussing her family, though, she profiles a dozen different elders and their families. Each chapter follows two or three groups as she presents various eldercare options: “aging in place”, moving in with family, assisted living, full-care nursing homes, and hospice. At the end of each chapter she reviews the questions and issues that have to be discussed with elders and their caregivers.
The media has distorted the care issue. It seems as if everyone is doomed to end up warehoused in an institution: demented, immobile, and incontinent– without long-term care insurance and dependent on Medicaid– for at least a decade. The reality is far different. Fewer than 5% of elders live in full-care facilities, and nursing home use has declined for over two decades. Only about 20% of elders use paid home-care assistance, even among the most disabled.
Admittedly technology and healthier lifestyles have created their own elder problems. Deaths from heart disease and strokes have dropped sharply over the last 40 years, but more seniors are living on their own well into their own creeping disabilities from physical deterioration– and dementia. Although the elders prefer to be “independent”, they’re increasingly unable to do it by themselves.
Where does the necessary care come from? The families. In the majority of these situations, the family has to “step up”. From the perspective of adult children, this means they might be arranging elder care when they’re in their 60s– and maybe even their 70s. It’s a mighty big step, too. We don’t know much about long-term care or the Medicare/Medicaid system. We’re taking on care tasks that used to be handled by nurses, especially monitoring symptoms and administering medication. We’re doing it while trying to hold down full-time jobs, at considerable personal expense, and maybe even as we raise our own kids. Sibling rivalries resurface. We burn out. It’s hard to share Paula’s optimism. Yet a theme of the book is the surprising “caregiver gain” as we handle the challenges, master new skills, and find a real meaning & purpose in caring for our elders. We can solve these problems, and we’re better people for it.
Aging in place is the goal of many elders, but it’s not the panacea they’re imagining. Frailty and falls are common, while the families grow concerned about diet and dementia. Some elders are still driving, perhaps a danger to everyone else on the road– or near it. Others have had the wisdom to stop driving yet are now coping with a fragile web of public transportation, ride-sharing, or cabs. Still more are losing their mobility, becoming isolated and lonely while still clinging fiercely to their “independence”.
Span looks back to the fabled “nuclear family” era when Grandma & Grandpa would move in with their adult children a few years after retiring. Why did that stop? Sociologists discovered a surprising answer: Social Security. If Grandma & Grandpa could get a little more income to supplement their savings, they didn’t really want to spend their final years imposing on their families. They wanted to continue to live as they had, in their familiar communities and on their own. As they become less able to handle the activities of daily living, though, they need more in-home assistance: housecleaning, perhaps meal preparation, eventually bathing & dressing, and maybe even toileting. “Independence” requires a support cast of short-term caregivers who aren’t always available and may not always be the best– they’re certainly not paid like rock stars. They’re usually part of a creaky system of part-time care, drop-in nurses, food deliveries, family visits, and even emergency ambulance response. It’s usually a dynamic balancing act to see which happens first: the elder chooses a different lifestyle, or a crisis forces it on them.
We’re all more familiar with the issues of living with family, or with the “family” of assisted-living communities. The book’s chapter checklists revisit them with discussion topics and more resources. By this time the families have begun to step up their own care, and it’s usually for the long term. Elders have to confront their remaining options (before dementia), siblings have to set aside their rivalries, and everyone has to assess lifestyle changes and new budgets.
The book’s nursing home chapter has a surprising twist: one adult daughter feels even more stress and guilt when her father is there rather than with her. Yet when her father is at her house, her own spouse and children point out everyone’s lack of privacy and personal space. She doesn’t get adequate rest or exercise, and vacations are impossible. They’ve been living this way for five years and she still can’t accept the idea of “abandoning” her father to a nursing home. This behavior carries over to the facility itself, where she finds one way after another to sabotage the caregiver’s attempts to bring her father into the group routine. They complain about her interference while she’s dismayed over their “lack of care”.
The final chapter discusses the different hospice options– palliative care in an institution or at home, “slow medicine” that focuses on quality of life instead of extreme lifesaving measures, and everyone’s emotional & spiritual needs. As Paula presents the issues, she also sweeps her readers into the suspense of an elder “hanging on” to attend a daughter’s wedding or to see the beginning of a new year. She advises learning about hospice well in advance, because a crisis may force a quick decision before the options are understood and the caregivers can be found. Families have significant cultural & religious concerns and have to build a trusting relationship with the hospice staff before elders enter their final days. The “problem” with this step is that families (and especially doctors) are reluctant to “give up” on medical solutions or therapies. Sometimes the elder hasn’t made their own decision or is no longer able to communicate their desires. Hospice staff can’t have a detailed discussion of the choices until at least the family is ready to stop pursuing a cure and refocus on quality of life.
At the end of the book, Paula returns to the theme of limited options and hard choices. Yet I found her analysis comforting– even reassuring. Every problem has some sort of solution, and there are frequently several different approaches. Governments and institutions are struggling with funds and standards, but technology is offering many more options than a generation ago. Society– especially the Boomer generation– is finding new systems and solutions. Families are also becoming more aware of the issues and have more support when they “step up”.
My brother and I are facing these choices with Dad, who’s already in a full-care facility with mid-stage Alzheimer’s and multiple myeloma. Dad’s still interested in participating in the decisions, although he’s probably at best marginally competent to do so. Luckily he made his preferences clear years ago, not just orally but in letters and on the facility’s documents. I’m a natural worrier and perpetually concerned about the surprises of “the next step”, and the book is a big help in learning about the issues so that I can confront them in my way– before my brother and I tackle them together. I actually enjoyed reading a positive book about the challenges.