Worn-out caregiver? Not alone. 1 in 3 Michigan women aged 50+ care for others

• Estimates vary when it comes to how many people are caregivers
• It’s a responsibility that ranges from checking in on someone to acting as chauffeur and patient advocate to providing round-the-clock care in the final days of life
• A new poll suggests that about 3 in 10 Michiganders overall are caregivers, but about half aren’t aware of a longstanding resource where they can find help

More than 1 in 3 Michigan women 50 and older are caregiving for at least one person with a health condition or disability, according to state data extracted from a national survey. 

It’s a responsibility that — while it offers rewards and moments of joy and laughter — can exact a heavy physical, emotional and financial toll. 

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And while men also are caregivers, it’s a duty shouldered primarily by women and primarily for people older than 65, according to the latest installment of the University of Michigan National Poll on Healthy Aging, which began in 2017 to survey older Americans throughout the United States.

The latest poll showed that just over 29% of Michiganders age 50 and older were caregivers, but the number jumped to 35% among Michigan women 50 and older.

“People are living longer, and that’s a blessing and a gift,” said Karen Monts, at Ann Arbor-based Hospice of Michigan. “But what comes with that is that the 70-year-old daughter, the 65-year-old son, the 60-year old neighbor, caring for parents, grandparents, aunties and uncles.”

Monts, 58, is manager of counseling services at the hospice agency, which has locations throughout the Lower Peninsula. Earlier this year, she was among Michigan’s caregivers, too. She and her siblings were caring for a 64-year-old sister until she died of complications from cancer this spring.

Expect caregiving in your 50s and 60s

The poll, which was released Tuesday, confirms what many had sensed: That caregiving often falls to those in their 50s and 60s and, more often than not, to women. 

The answers also revealed “specific health issues and disabilities they're helping loved ones with and … the need for more awareness of existing support programs for older adults and their caregivers,”  Sarah Patterson, the U-M demographer who worked with the poll team on the new survey, said in a prepared statement released with the findings.

Nationally, the most common health issue or disability that requires assistance from a caregiver is a physical disability or mobility problem, at 59%. But memory or thinking were issues 42% of the time, followed by vision or hearing impairments at 28%, and mental health concerns at 22%. 

The poll paints a picture of caregiving in Michigan, too — based on interviews of 344 Michiganders age 50 and older who said they are caregivers:

• Nearly 7 in 10, or 69%, take care of someone over age 65
• Nearly 1 in 5, or 19%, take care of someone with an intellectual or developmental disability
• One in 20, or 5%, take care of three or more people
• And 1 in 20 caregivers said they were tending to three or more people.
• About half say the government should take the lead in covering the cost of caregiving for people aged 65 and over, while 26% said it should be the person receiving care and 19% said family or friends.

The poll also revealed a lack of awareness about Area Agencies on Aging, a national network of federally funded centers — 16 in Michigan — created by Congress in 1974 as one-stop shops for programs, services and housing options for older Americans.

Even as a more than 30-year social worker, Monts said she was surprised to have to search for answers and for help for her sister and the siblings that cared for her.

“I had to call in friends and social workers; Where do I find this and where do I find that (resource)?” Monts said. “I never thought I’d be the person on this side.”

Navigating the caregiving experience

For many Americans, caregiver isn’t a role, it’s simply a verb. It’s what they do as part of the family and community, said Dave LaLumia, executive director of the Area Agencies on Aging Association of Michigan.

“Even when you’re knee deep in (caregiving), some people just think of it as what they do. It’s part of their life, and they don’t see themselves as a caregiver or that there are resources that are available” to help them through it, he said.

LaLumia talks from experience: “My mom lived with us for 10 years before she passed. We were delighted that we could provide her a place…. But we didn’t think of ourselves as caregivers or in any other way than her son and daughter-in-law,” he said.

That may be one reason caregivers who put their loved one’s needs in front of their own are exhausted, worn down, and suffer suicidal ideations. 

In the thick of caregiving, it’s about putting one foot in front of the other day by day and hour by hour, often while juggling someone else’s walker or wheelchair or tending to their meals or toileting issues, said Kathy Dawkins, of Leland, who cared for her mother-in-law, mother and husband, all of whom had dementia when they died.

She said she nearly drowned in depression after her husband died.

“When he was alive, I didn’t have the choice of falling apart,” she said.

These days, she can almost laugh about the unexpectedness of caregiving and those horrible moments, she said — tending to her husband’s adult diapers or navigating her mother’s final days when she no longer recognized she had children or when, in confusion, she slapped a helpful police officer she thought was assaulting her.

Dawkins took a course at the Area Agency on Aging to help her know how to handle the cruelty of dementia.

“It educated us on dementia, but just knowing I wasn’t the only one (caregiver) helped,” she said.

The aging poll is based at U-M’s Institute for Healthcare Policy and Innovation and funded by AARP, U-M’s academic medical center and the Michigan Health Endowment Fund.