The Stoicism of the Caregiver
These are difficult realities without Hollywood cliche answers.
Caregivers and the costs of caregiving don’t get much attention. They’re not part of the news flow, and the day-to-day grind of caregiving doesn’t lend itself to the self-promotional zeitgeist of social media. Look at me, helping Mom on her walker is not going to score big numbers online.
The burdens in human and financial terms are often crushing. These realities are generally obscured by taboos and Hollywood cliches: it’s considered bad form to describe the burdens of caregiving, and anyone who dares to do so is quickly chided: “You’re lucky your parent is still alive so you can spend quality time together.”
Meanwhile, back in the real world, 4 in 10 family caregivers rarely or never feel relaxed, according to a 2023 AARP survey, as an integral part of caregiving is being on constant alert for something untoward happening to the elderly person in one’s care.
The demographics are sobering: we’re living longer, often much longer, than previous generations, and in greater numbers. This means 65-year olds are caring for 85-year olds and 70-year olds are caring for 90+-year olds. I’ve logged 8+ years of caregiving (5+ years here at home) from age 63 to 70 caring for my mom-in-law, so I have personal experience of being old enough to “retire” but retirement is a fantasy for caregivers. Our neighbors are 80+ years of age and they’re caring for her 102-year old Mom. What’s this retirement thing people talk about so cheerily?
All these realities are abstractions until they happen to you.
These burdens are seeping down to Gen X and the Millennial generation. ‘It’s a job, and a tough one’: the pain and privilege of being a millennial caregiver.
The financial costs of care are staggering. A bed in private assisted living is around $75,000 and up a year, a private room in a nursing home is around $150,000 a year, and round-the-clock care at home costs from $150,000 to $250,000+ annually.
The Crushing Financial Burden of Aging at Home (WSJ.com)
“Christine Salhany spends about $240,000 a year for 24-hour in-home care for her husband who has Alzheimer’s. In Illinois, Carolyn Brugioni’s dad exhausted his savings and took out a home-equity line-of-credit to pay for home healthcare.”
More than 11,000 people in the U.S. are turning 65 every day and the vast majority–77% of Americans age 50 and older according to an AARP survey–want to live as long as possible in their current home. At some point, many will need help. About one-fourth of those 65 and older will eventually require significant support and services for more than three years, according to the Center for Retirement Research at Boston College.
About one-third of retirees don’t have resources to afford even a year of minimal care, according to the Boston College center.
“The new inheritance is not having enough money to give to kids but to have enough money to cover long-term care costs, says Liz O’Donnell, the Boston-based founder of Working Daughter, an online community of caregivers.
The costs of home care are so high that not just inheritances are exhausted; the home equity is also drained. $350,000 sounds like a lot of money but that might cover two years in a nursing home but not be enough to cover two years of round-the-clock care at home.
The cost of maintaining the home doesn’t go away: property taxes, insurance and maintenance expenses must be paid, too.
Those without monumental financial resources make do by doing everything themselves. Depending on the resources available in the community, there may be some minimal assistance such as weekly visits by a nurse, meals delivered, and adult day-care facilities, but there are no guarantees any of these are available or that the family qualifies.
In other words, the idea that the retired generation will leave ample inheritances is increasingly detached from reality. As noted, the new inheritance is to get through the years of caregiving without acquiring debt.
The human costs are high, too. In the Hollywood cliche, everyone adapts and makes the best of it, and there’s plenty of Hallmark moments that make it all worthwhile. Yes, there are Hallmark moments, but the elderly person misses their independence and may feel resentment that they no longer control how things are done. The caregivers are often exhausted–especially if they’re 65 or older–and despite their best efforts may feel resentment at ending their careers early and sacrificing their own last best years caring for a decidedly unstellar parent who doesn’t seem to appreciate the immense sacrifices being made on their behalf.
The indignities of extreme old age weigh on the elderly, and the 65+ caregivers worry that they can’t pick Mom or Dad up now that they’re so old that they have their own infirmities.
The responsible parent frets at the expense and feels bad they won’t be able to pass on much to their grandkids. They may express guilt at being a burden, though that is beyond their control. The responsible adult child is burning out trying to juggle three generations and keep themselves glued together enough to keep functioning. They can’t help but want their own life back, but to say this out loud is taboo because if life gives you lemons, make lemonade. In other words, tell us a happy story, repeat an acceptable cliche or say nothing.
Nobody wants to hear any of this, and so the caregiver develops a self-contained stoicism. Everyone with no experience of caregiving wants to hear the Hollywood version, and so conversations with other caregivers are the only moments where the truth can be expressed and heard. In the rest of “normal life,” the caregiver quickly learns to say what’s expected: “We’re managing. Life’s good.”
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