For Family Caregivers, Unpaid Hours Add Up

Jun 17, 2015

Lori Dollman hooks her muscular arms beneath her mother’s and begins to count.

“One, two, three,” Lori says, helping 86-year-old Regina plod slowly into the living room of their south Kansas City home. In a nursing home, Regina would be a two- or three-person carry. Lori lifts Regina alone.

“We don’t need hospice,” says Lori. “We’re doing quite well. She now walks out of her room with me holding her. I wish I had another me, but there isn’t. So I hold her in the front, and we walk, slowly, out of the room.”

Lori is one of a growing number of Americans – more than 43 million people – who cares for an aging loved one for free. Family caregivers aren’t front and center in the health care system, so their contributions aren’t often recognized.

“I do not work,” says Lori. “I am a caregiver full-time. I do not sleep through the night. My mother wakes me up because she cannot get out of bed without assistance.”

In the 13 years since Lori’s father died, the Dollmans have established a routine.

“My mother gets her hair washed. I’m not going to do for my mother dry shampoo,” says Lori. “That’s not who I am. We still do conditioner. I still color my mother’s hair.”

Today, Lori helps Regina put on lipstick.

“And do you look good?” Lori wants to know.

Regina is showing signs of dementia, but she still has a sense of humor. “Give me the mirror,” she quips, “and I’ll let you know.”

Family caregiving takes a toll

The amount of time Lori spends helping her mother puts her in a category of caregivers most likely to feel stress because of their roles.

“We usually talked about the average caregiver: a woman who’s 49, taking care of a 69-year-old relative, usually her mother, and has been doing it for about four years,” says Susan Reinhard is senior vice president of AARP’s Public Policy Institute.

But a new AARP study out earlier this month shatters the idea of an average caregiver.

“Thirty-two percent of family caregivers are spending more than 21 hours a week in family caregiving,” Reinhard says. “Even more important than that, it’s not just 22 or 23 hours. The average is 62 hours – a whopping 62 hours a week – on top of their jobs.”

About 13 percent of the caregivers AARP surveyed have left the workforce entirely. The impact on future earnings, on Social Security – Reinhard says it can’t be understated. Not to mention the toll it takes on their physical health.

“I consider those who are doing this family caregiving future patients themselves,” she says.

That’s no surprise to Laura Gilman with Jewish Family Services, one of the metro-area agencies that receives funding from the Mid-America Regional Council to administer elder-care services.

“Like, all of a sudden, the caregiver who’s providing 24/7 care has a swollen arm,” says Gilman of 42-year-old Lori. “It turns out to be a blood clot, and she has no health insurance.”

Lori’s health scare earlier this year left her in need of support. She turned to Gilman, who helped Regina, a Holocaust survivor, apply for her pension. Today, Gilman mostly worries about Lori.

“Caregivers will say to me, ‘Well, I can’t get out,’” says Gilman. “We actually have part of our home care fund earmarked for respite services. So if someone needs an hour a week to get to a support group, we can provide respite for that hour to make sure the caregiver can get there.”

No one to take care of caregivers

With Gilman’s help, Lori got insurance. She says her arm feels better, but not 100 percent.

“So right now, when I’m working with Mom, I say, ‘Lean to my left, not my right, because I have to stay healthy for the both of us,’” Lori says.

Family photos line the walls of the Dollmans' home. Here, a young Regina is shown serving in the Israeli Army. She waited until she was in her 40s to have Lori and her sister.
Credit Elle Moxley / KCUR

Lori has devoted her entire adult life to caring for one or both of her parents. But shifting demographics mean there might not be anyone to care for Lori someday.

In 2010, an 80-year-old had, on average, seven potential caregivers. By mid-century, when Lori turns 80, it’s expected each older adult will have just three potential caregivers. Lori has a sister in Florida, a niece, one nephew. But no kids of her own.

“I don’t have a boyfriend. I don’t go out like used to. But do I have any regrets? As my mother and father always taught me, ‘Home is ... ’”

Lori pauses, lets Regina finish.

“Home.”