rewrite this title As the U.S. population ages, solo caregiving becomes more common

NPR’s Emily Kwong speaks with clinical social worker Marie Clouqueur on what it’s like to be a solo caregiver and how to navigate the challenges.

EMILY KWONG, HOST:

Call it a silver tsunami or just going gray. The U.S. Census Bureau reports that in just 10 years, older adults will outnumber those under 18 for the first time in U.S. history. America is aging, and that means more families providing care for parents and grandparents and even great-great-grandparents. And while much has already been said about caregiving, there is far less research into what it’s like to walk that road alone. To talk about solo caregiving and more, we called Marie Clouqueur. Clouqueur is a clinical social worker specializing in older adults and family work at McLean Hospital in Massachusetts. Welcome to the show.

MARIE CLOUQUEUR: Thanks so much for having me.

KWONG: So let’s talk about this phenomenon – because I imagine a lot of NPR listeners are in this situation, are the sole caregivers…

CLOUQUEUR: Absolutely.

KWONG: …Of people they love. So can you talk about what are the mental and physical day-to-day realities of that?

CLOUQUEUR: The day-to-day is you’re not only caring for yourself but also keeping up with appointments, creating a social calendar, making sure meds are correct. You’re running two people’s lives…

KWONG: Yeah.

CLOUQUEUR: …But you’re only one person. And this is also a significant role shift for everyone, whether it’s a spouse caregiver, who based their life with this other person as mutually coming to decisions, of someone who cared when you said, you know, I really need a haircut, and they actually listened to you. And now you’re holding all of that with no one to share it, or a child who’s caring for a parent where the roles are now reversed. And this is a huge disorientation for caregivers.

KWONG: Yeah. Just briefly, what additional challenges do single caregivers face when taking care of those who have dementia or Alzheimer’s or another cognitive disease?

CLOUQUEUR: People who care for someone with dementia, the hours are much more. And this has a physical and emotional toll on folks, where the, you know, dementia caregivers have 40% higher odds of increasing in frailty, chronic diseases like diabetes, even increased odds of cancer, decreased mobility, and then higher levels of depression and anxiety. And the toll is, you know, in part because dementia can be such a long disease, but it’s also what they call the long goodbye. You’re losing a piece of a person at a time as their abilities change. And so it’s a moving target. You think you’ve adjusted, and then the disease progresses, and you’ve lost another piece.

KWONG: And so where can people turn to for help in that situation, both among their family and friends and also when it comes to groups or services?

CLOUQUEUR: There are aging service access points or area agencies on aging, called AAAs or ASAPs. And so these coordinate and offer services that help older adults remain in their homes, get some home care, Meals on Wheels, homemaker assistance. Some of them would be private pay – things like home care agencies where a home health aide may be able to come in, depending on one’s financial situation. Sometimes these can be covered by, say, Medicaid.

KWONG: And I imagine having stronger social connections makes a big difference in having just contingency plans. You know, should something happen to you as a caregiver, knowing there’s a wider community out there to check in on your person is important.

CLOUQUEUR: It sure does make a difference. It is both important for the caregiver to cultivate social connection, but I also think about what- is our responsibility as a society? When caregivers are supported in the ways that help them to draw out those deep values that keep them – maybe started them caregiving and keep them caregiving – things like loyalty, feelings of integrity, selflessness, the closeness and connection of caregiving and of inviting other people into their lives to share through help actually yields people who have become more flexible, more tender, more gracious and more connected. If we can imagine that help for caregivers would support even a fraction of the 53 million caregivers that we have in the U.S. to emerge as that more generous, gentle, connected people – can you imagine how that will change our society? And I think that this is the invitation to our generation to care for our older adults and to care for their caregivers.

KWONG: Marie Clouqueur is a clinical social worker specializing in older adults and family work at McLean Hospital in Massachusetts. Thank you so much for talking to me.

CLOUQUEUR: Thanks so much for having me.

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