My last post, on the death of my friend L., evidently struck a nerve (see How Not to Die, March 17). It seems many of us have been thinking, however reluctantly, about end-of-life issues. I want to say a couple more things about L.’s case and then share some thoughts about the situation of elder care in this country and what this means for those of us who are at or near retirement age. My friend's experience was both atypical and emblematic of a broader societal crisis in end-of-life care.
L.’s lack of options
My last post stressed the need to plan ahead, but in L.’s case such planning would have been extremely difficult. She had ALS, a disease that typically progresses to severe disability and death within two to five years. She was diagnosed at 68, an age when most people haven't yet applied to, much less entered, a senior living facility. L. and I are almost exactly the same age, and at 68 I certainly hadn’t lined up any retirement options; neither had she. Yet once she fell ill, it was already too late.
Early in her illness, L. contacted a few reputable facilities in our area, but the responses were discouraging. Normally, in order to enter a continuing care retirement community (CCRC), which offers several levels of care, you have to be healthy enough to start out in “independent living.” With her diagnosis, the doors slammed shut. CCRCs won’t accept someone into independent living who’s on the verge of needing costly round-the-clock care. Direct admission to the assisted living wing of a CCRC was an option, but at an astronomical cost, $11,000 a month or more. As a retired federal employee, L. had savings, but she couldn’t have sustained that cost for long. Once she lost her ability to speak, and with no family to advocate for her, doing further outreach to find options became all but impossible.
She ended up, temporarily, at a tiny, privately owned assisted living “home” in the suburbs. With just five beds, run by a registered nurse and her business partner, it didn’t seem awful, but it wasn’t great either. There are many such small profit-making ventures that offer senior care, varying widely in quality, no doubt. For myself, I hope to avoid them.
A looming disaster
Most of us won’t be struck down by illness in our sixties. We have a little more time to plan. That’s why I’ve been trying to understand the senior care landscape and the choices we may face. It’s not a reassuring picture.
Many people hope to “age in place,” staying in their longtime home as they grow old. And for some people it works out fine. My Uncle Charlie, a retired music professor, was determined to continue living independently until the end. And he did just that. Uncle Charlie remained physically active and mentally sharp into his mid-80s, commuting between his cozy house in Portland, Maine, and his beloved camp in the Maine woods. He had two adult children living nearby and a biweekly house cleaner, but he remained self-reliant right up until his final illness, which was mercifully brief.
I think many people aspire to the Uncle Charlie model. How many will manage it is another question. My uncle was spared a lengthy decline, but statistics show that few of us will be so lucky. People are living longer than ever before, which sounds great until you consider that those extra years often come with deepening disabilities – physical and/or cognitive. Many of us will require months or years of care. Provided by whom? Paid for by whom? Our society has barely begun to address these questions.
Meanwhile, the boomers, my generation, are 73 million strong and turning 65 at a rate of 10,000 a day. We’re about to swamp the limited, fragmented, and understaffed care infrastructure in this country. Elder care is a looming social and economic disaster that’s only going to get bigger.
So what options do we, as individuals and families, have within this difficult context? I’m not an expert on this. I’m just beginning to read and think about it. Also, I view the issue through the lens of my own economic circumstances, which are surely better than the average. With those caveats, a few observations.
Staying in one’s home
Aging in place is what most people say they want and it’s what most do. But most elders aging at home will eventually need help, and when they do, it’s usually unpaid family members who provide it. Hiring home health aides is unaffordable for most families; a full-time aide hired through an agency averages $5,000 a month. Medicare doesn’t pay for long-term care. Medicaid will pay in some cases, but to be eligible a senior must spend down their assets to less than $2,000, and the wait time for home health coverage averages three years.
So family members – a spouse or an adult child – step up. They supervise bathing, dressing, feeding, and toileting, administer medications, and learn to manage complex equipment like oxygen tanks. For adult children still in the workforce, caregiving cuts into their working hours and drains their savings, leading to job loss and debt. The caregiver’s own physical and mental health may suffer. Even when a family can afford to hire help, scheduling and supervising a roster of aides becomes a job in itself for the family member who takes it on. I have several friends who are doing this for their elderly parents, and they’re stressed out.
Several generations ago, households were larger and often included a grandparent living under the family roof. Elder care, along with child care, was subsumed into women’s unpaid domestic labor, but at least there were more hands to help out. And old age didn’t last as long as it does now. Today, people are living to advanced ages with overlapping physical and cognitive disabilities, often including dementia, and they need complex care. Most younger women are in the paid workforce, and families are scattered geographically. So what may have worked several generations ago isn’t working now. Some families are managing, perhaps even managing well, but many are feeling unbearable strain. Unpaid family caregiving isn’t a viable solution to the broader social problem of elder care.
Moving to a senior living facility
The alternative to aging in place is moving to an institution or community of some sort. Senior living facilities, which may be for-profit or nonprofit, offer four basic levels of care: independent living, assisted living, skilled nursing, and “memory care” for people with cognitive decline. Some facilities offer just one level, others a combination. All of them are unaffordable for most people. Assisted living can cost $60,000 a year or more, and the median cost for a room in a nursing home is over $100,000 a year. Entrance fees for CCRCs can reach half a million dollars. Medicare is of very little help, covering only 100 days of skilled nursing care. Medicaid pays for long-term care in a nursing home and sometimes for assisted living, but seniors must impoverish themselves to qualify. Neither Medicare nor Medicaid pays for independent living.
CCRCs, or continuing care retirement communities, offer three and sometimes all four levels of care on the same campus. Residents typically start out in independent living and progress to assisted living and nursing care as their needs change. There are several different financial models. In type A, the so-called life-care model, residents pay relatively high entrance and monthly fees but the monthly fee stays essentially flat as one moves to higher levels of care. Types B and C may charge lower entrance and monthly fees at the outset, but when a resident moves to a higher level of care, the monthly fees increase steeply.
CCRCs serve the more affluent seniors, many of whom sell a home to finance the entrance fee. In exchange, these facilities provide a great deal of security. Residents who start in independent living are guaranteed a place in the community’s assisted living or skilled nursing wing, if and when they need it. And in the case of nonprofit CCRCs, at least, residents who exhaust their resources are usually subsidized by the facility and can live out their days there.
Senior living institutions vary widely in quality. There are excellent, well-run facilities, providing high-quality care; there are merely adequate ones; and there are horrible ones, where the care is substandard. The industry as a whole faces severe constraints. Generally speaking, wages for elder care are low, and the work is strenuous. As a result, turnover is high, and many senior facilities face a labor shortage. It’s fair to say that this patchwork of institutions, of uneven quality, beyond the financial reach of most people, doesn’t provide a society-wide solution, either.
A dangerous silence
Why are policymakers not talking more about this? One reason is the persistent notion that elder care is a family matter and not society’s problem to solve. Another is the fact that care labor is largely hidden from view, provided in homes by unpaid relatives and privately hired aides. Whether in homes or institutions, most caregivers are women, and in the case of paid workers, mostly women of color, including many immigrants. So elder care is considered women’s work and racialized work, and as such it is both invisible and devalued.
In Elder Care in Crisis, Emily K. Abel writes: “Because government policies are based on an ethic of family responsibility, repeated calls to support family members caring for the burgeoning elderly population have gone unanswered. Without publicly funded long-term care services, many family caregivers cannot find relief from obligations that threaten to overwhelm them. The crisis also stems from the plight of direct care workers (nursing home assistants and home health aides), most of whom are women from racially marginalized groups who receive little respect, remuneration, or job security.”
We face daunting choices as individuals and as a society. When it comes to aging, the personal and the political really do go together.
For more information, check out these resources:
Senior care is crushingly expensive. Boomers aren’t ready. Washington Post, March 18, 2023.
Elder care in crisis: How the social safety net fails families. NYU Press, 2022.
The staggering, exhausting, invisible costs of caring for America’s elderly. Vox, August 26, 2021.
The crisis facing nursing homes, assisted living and home care for America’s elderly. Politico, July 28, 2022.
All states must set higher wage benchmarks for home health care workers. Economic Policy Institute, June 2, 2022.
Getting old is a crisis more and more Americans can’t afford. New York Times, August 9, 2021.
The agony of putting your life on hold to care for your parents. New York Times, March 28, 2023.
What to know about continuing care retirement communities. US News & World Report, February 10, 2022.
I have delayed commenting, but not because Juan and I haven´t thought about it. Being in Mexico has it´s advantages and disadvatages. There are NO good govenment options here, and the private ones are very expensive (though not close to the cost in the states) Our plan, like everyone´s is to die quickly at home, be cremated and our ashes scattered in the garden. If not, Juan and I both know that the other one does not want a lingering death. If we are not able to make this descision ourselves , it is up to him or me. this has been discussed. Seeing my mother and father at the end of their lives was very traumatic. My dad was happy, but my mother taking care of him, even with 24 hour nursing care was devastated. Susan did most of the taking care of Mom, though I called her several times a day in the last years of her life. And she called me another 5 or 6 or 15 times a day. Susan was really exhausted, even though Mom had part time help and was in a care facility. (This was only the last year or so of her life.) Before that she was thrilled to be around people and had lots of friends and people to talk to: her gang, (as long as they were not Republican) Back to us. If we do need care, it isn´t that expensive to hire nursing care here to come to our house. I would certainly not want to have any of my children take care of me.
Cathy, Your articles are just right- thank you for writing and sending them.
Robert and I ( long time friends of the Kolas) are in our 80's and i have lookoed into this topic as most of my (alive female)friends have now moved in a CCRC. I have recently visited two of them and discovered the good ones have LONG wait lists- 4-8 years! i also learned that fellow teachers of my son ( ago 60) are now looking into ccrcs for themselves!! It is a delima for sure, and needs more attention. Thanks. Carol Scofield