Until just a few years ago, Jim Molnau, 69, didn’t know how to run the dishwasher. He couldn’t cook, do laundry, prepare taxes, pay the bills or even write out checks.
His wife of more than 40 years did all of those things.
Now Faye Molnau has developed Alzheimer’s disease and can no longer perform those household tasks. When they wash dishes together — he washes; she dries — Faye doesn’t remember where they go, so Jim puts them away. The Molnaus go grocery shopping together, Jim making sure he’s at the checkout to stop her from moving items from the conveyor belt back to the cart. Faye once stashed ice cream in the freezer and accidentally left the door open, letting all the contents thaw, so now Jim double-checks.
“She wants to do a lot of things and she just can’t,” said Jim Molnau, who lives in Lakeville. “I do everything nowadays, almost everything — things I’d never done before. I’m sure there’s a lot of things I’m going to be doing soon that I’m not looking forward to.”
Caregiving, as the Molnaus have discovered, can mean changing traditional roles — husbands taking on wives’ jobs and vice versa; children watching over a parent the way the parent once watched over the child. It means learning new skills, handling unfamiliar tasks and cultivating the ability to be patient.
And those are hardly the only challenges facing the estimated 34.2 million Americans — including 670,000 in Minnesota — who provide unpaid care for people with dementia, mobility limitations or other health problems.
The majority of care that older Americans receive comes from adult children, spouses, friends and other unpaid people. Sixty percent of caregivers are women. On average, family caregivers provide 24 hours a week of services, according to a 2015 AARP report. If those services were paid, they’d be worth about $470 billion a year — or about half as much as the federal government spent last year on Medicare, Medicaid, the Children’s Health Insurance Program and the Affordable Care Act combined.
Saving taxpayers money
More than 80 percent of older adults rely on an unpaid caregiver for help, said Joseph Gaugler, a professor in the University of Minnesota’s School of Nursing and its Center on Aging.
“Families are at the core of the long-term care system, which saves taxpayers money,” said Gaugler, co-editor of “Family Caregiving in the New Normal,” published last year. “If you took caregivers away, it would annihilate the long-term-care system, and probably the economy.”
Family caregivers shop, cook, clean house and provide transportation. They dress, bathe and help with toilet use or diapering. They handle finances and insurance. They meet with providers, agencies and professionals. They schedule and attend appointments. They interpret health symptoms, dispense medication and perform nursing tasks.
People who prefer to remain in their own homes are able to do so thanks to caregivers’ assistance. Even people in residential care often rely on caregivers to monitor their circumstances, interact with staff and be the squeaky wheel, if needed, demanding better services.
Adult day programs can provide caregivers with some respite, but they cost on average $67 per day, according to the U.S. Department of Health and Human Services’ Administration on Aging, generally out of families’ pockets. Home care services, which provide paid caregivers to perform household tasks, transportation and other services, average $19 an hour; $21 is the hourly average for home health care.
Caregivers face challenges of their own. They’re often thrust into their roles involuntarily — perhaps unexpectedly — with little preparation, training or knowledge of available services. They struggle to balance their caregiving duties with other responsibilities, such as jobs and families. Often, they wind up setting aside their own needs to make time for those of others. They may experience stress, depression, grief, isolation or a feeling of being overwhelmed — an emotional toll sometimes referred to as “caregiver burden.”
“There are three significant challenges of caring for somebody with dementia or Alzheimer’s disease,” said Heidi Haley-Franklin, vice president of clinical services for the Alzheimer’s Association Minnesota-North Dakota Chapter. “There’s a high degree of stress. … There are health challenges — it gets really difficult to take care of yourself as a caregiver. And there are financial challenges; it is quite expensive, considering the additional health care costs and lost time at work.”
Financial strain affects 17 percent of caregivers, according to the AARP study. Most caregivers work, averaging nearly 35 hours a week. But their jobs aren’t always flexible enough to accommodate caregiving duties, so they take time off, work late or early, take leaves of absence, quit altogether or take early retirement.
Nearly 20 percent of those surveyed said their own health is fair or poor, or has worsened as a result of their caring responsibilities. Eighty percent said they could use more help and support.
And then there’s stress — reported by 40 percent of caregivers in the AARP survey and as high as 60 percent among caregivers of people with dementia, Haley-Franklin said.
“I definitely can get down,” said Mary Margaret Lehman of Edina, whose husband, Ken, has Alzheimer’s. She keeps a gratitude journal to offset negative emotions. “I have to monitor myself to make sure I don’t get down for too long. I can give myself time to feel sad, I have to honor that, but I have to limit it, if we’re going to keep going.”
Fewer than half of caregivers say they have made plans for their own care, should they eventually need it. But if they do, they may have a harder time finding someone to provide it.
“A major threat to the sustainability of caregiving is that fewer caregivers are available for assistance,” Gaugler said.
Aging baby boomers will depend, in increasingly greater numbers, on care provided by members of much smaller subsequent generations. Also, today’s adult children are more likely to live far from their parents.
In 2010, the ratio between people age 45 to 64 (the typical age of caregivers) and people age 80 and up (those at highest risk of needing care) was 7 to 1. That ratio is projected to plunge to 4 to 1 by 2030 and to less than 3 to 1 by 2050.
Technology — robots, home monitoring equipment and other devices — can help fill some caregiving needs, Gaugler said, but not all.
“To me, technology will act more as a supplement, not as a substitute,” Gaugler said. “There’s always an important human element to the caregiving dynamic. Relatives want family members.”