Ali Harris first met her husband-to-be at age 18. More than four decades later, she became his sole caregiver, meeting all of his hygiene, health and emotional needs around the clock.
Harris recalls how her husband's moods and behaviors changed as his dementia and Parkinson’s disease progressed. In one particularly harrowing accident, he became agitated and pulled a door down on himself. Harris, who uses a walker, remembers having to crawl across the floor to rescue him.
“It’s just me and him,” she remembers thinking. “What am I supposed to do? I used to joke, 'Has anybody got some Navy SEALs? Like, who can you send in?'”
Her husband has since passed away. But the acute needs of other caregivers in Massachusetts, she says, remain pressing.
As Harris sees it, homebound people and their caregivers often fall through the cracks in policymaking. She and others who shared their priorities for state government through GBH’s “ Have Your Say: Gov. Healey’s Agenda” project say the estimated 780,000 family members providing unpaid care in Massachusetts are a population that needs more attention and support from state officials.
"They're not thinking about me having my husband bite my finger, or me physically crawling on a floor that I might not be able to get up from to get a door off of my husband," Harris said.
Caregiving can be more than a full-time job
Family caregivers' experiences span a wide spectrum. They're helping spouses, aging parents, children, siblings and other loved ones through a variety of health needs. Support, they say, can be hard to find, even as policymakers propose ideas aimed at making caregiving easier on families.
Harris had online support groups, and a hotline and other resources from the Alzheimer’s Association.
Martha Chisam, a retired school van driver, and her disabled son Danny, who’s in his 50s, visit the Life Center in Brockton. An acronym for Living Independently For Equality, the Life Center is a nonprofit based out of the community room in an apartment complex. It provides services and a gathering place for adults with disabilities, and it acts as a support center for their caregivers.
As Danny sits nearby with markers and a coloring book, Martha told the story of how she became her son's primary caregiver about 20 years ago after her husband died. Now, they're together essentially 24 hours a day, she said.
“When I was sick at one time, I was in the hospital. After that, he’s clinging to me,” she said. “It’s like, 'I will only go out with my mother.' And it’s getting a little better, but it’s like, 'OK, I’ll be here.'”
Chisam says she and her son aren't socially isolated; they participate in activities through the Life Center and other organizations, go to church, and spend time with family. But right now, she's having a hard time finding someone to do the dental work he needs, whether it's an office that takes the right insurance or a provider who will put him to sleep with anesthesia to fill a cavity.
The challenge of connecting with the right providers is a theme echoed by other caregivers.
Jamie Hart is a caregiver for her sister, a 61-year-old former nurse with younger-onset Alzheimer’s. She also cared for her aging parents near the end of their lives. Hart said she could spend hours pleading on the phone, trying to arrange services like podiatry care for her mother in hospice.
It was hard to mange it all during the workday, and Hart said she left her job in 2019. Her mother had died by then, but she still had her father's and sister's needs to juggle.
“Everybody I needed to talk to worked, let’s say 8 to 5,” Hart said. “I worked 8 to 5.”
On a recent afternoon, Hart sat at her kitchen table with her Jack Russell terrier on her lap and her neighbor Cheryl Grant across from her. Hart says she and Grant, whose late husband had frontotemporal dementia, are alike in their tenacity — neither would take "no" for an answer when their loved ones had a need, but nailing down a solution was usually tough.
Hart said she’d like to see a single clearinghouse for resources, a one-stop shop to help caregivers figure out how to meet their relatives’ needs.
"There are good people that that's their joy in life is to work with our loved ones. And finding those people is like ... it's a big secret,” she said.
Filling the shortage in the direct care workforce
The Massachusetts and New Hampshire chapter of the Alzheimer’s Association sees a link between the challenges unpaid family caregivers encounter and shortages in the direct care workforce. Essentially, you're more likely to be left with the burden of caregiving if you can't find professional help or relief.
The association backs a bill that looks to strengthen that workforce amid an aging population and growing demand for the services offered by home health aides, nursing assistants and personal care aides.
Chelsea Gordon, public policy director for the association's local chapter, said the legislation's goal is to help recruit people into direct care jobs, remove barriers to entry, and reward people for staying in the field. In recent years, low pay and limited opportunities for advancement have led paid caregivers to leave the field for greener pastures.
"Currently, there are over 200,000 family caregivers or unpaid caregivers in Massachusetts that are providing over 300 million hours of unpaid care to their loved ones with Alzheimer's and other dementia," Gordon said. "So if our workforce is struggling, that really just increases the burden. If there's no one to come to your home and provide home care for your loved one, then what that means is, someone has to do it."
But not every family can afford to hire a professional. There are moves afoot, too, to provide direct financial support for family members who step into the role of caregiver themselves. The centerpiece of Gov. Maura Healey’s $742 million tax relief plan is a new $600 per-dependent tax credit, for people taking care of children under 13, seniors and adults with disabilities.
Some lawmakers see Healey’s proposal as an opportunity to ask for more. At an AARP advocacy day this week, Sen. Jason Lewis and Rep. Dave Rogers highlighted a bill that’s been floating around Beacon Hill for years but never made it into law: a $1,500 tax credit that would help family caregivers cover costs like medical devices, transportation to appointments and home health aides.
Rogers, a Cambridge Democrat, says the credit is one way the state could help ease burdens facing caregivers.
“People don’t talk about that, the stress it puts on families, because on the one hand, you’re caring for someone you love deeply,” he said. “On the other hand, these caregivers have other responsibilities in their life and their career and their work, their own children or what have you.”
This story is the result of audience submissions to a collaboration between GBH News, NEPM in Western Massachusetts and CAI on the Cape. Do Gov. Maura Healey's priorities align with the issues that are top of mind for you? Tell us what you think her focus should be.
