Susan Cogswell’s father “stepped up to the plate as the caregiver” when his wife could no longer take on that role.
“My mom suffered from rheumatoid arthritis for years,” said Cogswell, of New Lenox. “She took a back seat to being the caregiver of the whole family because of her health.” At that point, she says her father “did household chores, went grocery shopping, (and) did the cooking and the laundry.”
As her parents aged and her mother’s condition deteriorated, it became clear to Cogswell they needed help.
“(My father) was definitely in denial,” Cogswell said, but she noticed a sadness overcome her parents when she and her siblings first broached the subject of home-based help.
Cogswell chalks that up to her father being “too proud” to admit he needed help – though her mother was used to receiving it. “He was the one we had to convince to let go. We had to work with him way more than mom.”
Her experience is a familiar one, says Dr. Lee Lindquist, a geriatrician at Northwestern Medicine.
“I see patients in my clinic who could definitely use home support … and they’ll absolutely refuse it,” Lindquist said. “It drives me nuts because you see other people who are accepting of services and flourishing.”
Curious as to why some older adults refuse to accept help, researchers went straight to the source. “We decided let’s ask seniors, ‘Why wouldn’t you want help in the home? And what could we say to help you accept help?’” Lindquist said.
Nearly 70 seniors participated in the study and researchers documented four distinct reasons why they refused home-based help.
Among those reasons, participants reported feeling fearful when asking for help because they perceived it meant they could no longer perform a task. “I think one of the difficulties is when you’re asking for help, you’re kind of looking in the mirror and saying, ‘I can’t do this anymore,’ and I think that’s a hard thing to get over,” said one study participant.
Seniors also said they didn’t want to burden family members or others. They also reported being distrustful of home-based helpers “because they’ve heard these horror stories of someone getting taken advantage of, or had their stuff stolen,” said Lindquist.
Asking for help was also associated with a loss of control. “If they ask someone to, say, clean their house, they’re not in charge of what it looks like or feel like they won’t be in control of it,” said Lindquist.
After identifying the reasons behind their reluctance to accept home-based help, seniors shared their strategies for overcoming that reluctance, such as reframing the idea of independence. Rather than viewing the situation as a loss of independence, participants pointed out people are dependent on others throughout their lives.
“I prefer interdependence because I think, from the time we’re born until the time we die, everybody gives something even if they’re in ... a state where they can’t do as much,” said one study participant.
Seniors said that by accepting help, they are allowing others to feel joy in helping them, Lindquist said.
Participants acknowledged that asking someone for help the first time is difficult. But once they conquered the initial ask, they said they had an easier time asking for help again. Their advice for overcoming that hurdle: “Just bite the bullet and do it. Just ask,” said Lindquist.
While participants expressed concerns that utilizing home-based help would put them “one step closer” to being in a nursing home, Lindquist said that’s not the case.
“It’s actually the reverse,” she said. “You’re less likely to be in a place where you need nursing home support, if you’re willing to accept home-based help.”
Cogswell said her parents were able to remain in their home longer because they had home-based help. Her parents were moved into a nursing home last December. (Her father died in July at the age of 89, but her 87-year-old mother is still alive.)
If possible, she recommends a slow introduction to home-based help. Instead of starting with full-time, live-in help, Cogswell had someone come a few days a week to help her parents and gradually moved toward having someone stay with them 24/7.
Lindquist says at the very least, people should begin conversations about home-based help before an emergency occurs. “Because when an emergency happens, it’s too late,” she said, adding seniors have less authority in those situations.
Lindquist and study co-author Chris Forcucci hope families can use the insights gleaned from this research in guiding their conversations with seniors.
“They have some great ideas and we need to sit back and listen to what they’re telling us,” said Forcucci, who is a special advisor for integrated care and research for Aging & In-Home Services of Northeast Indiana.
“I love the content of what seniors gave us because it gives people the tools so they can speak the seniors’ language,” added Lindquist. For instance, families can tell seniors they won’t be a burden to them, or they enjoy being able to help them.
Researchers are planning to conduct a study where they’ll teach family caregivers how to negotiate with seniors, as well as provide an online course in the winter.