Wendy Drexler had been her husband’s caregiver for several years when she walked into the bathroom to find him brushing his teeth with a razor and some muscle cream.
“That was a threshold moment, where it just became clear I couldn’t keep him safe at home,” she said. “There were a lot of really stressful events, but this was a clear danger. He was just no longer safe.”
When he was first diagnosed in 2017 with mild cognitive impairment — an early stage of memory loss that often, but not always, progresses to Alzheimer’s disease — Drexler’s husband didn’t require a significant amount of extra care.
Over time, though, his condition deteriorated, and the impairment became more pronounced. Decisions they used to make together — financial or otherwise — she made alone. Meal planning became her responsibility, and safety issues became more of a concern.
Drexler recalled a family vacation after which the pair stayed in California with Drexler’s son before returning home to Massachusetts. During their stay, her husband placed an electric kettle on the stove, setting off the fire detector and ruining it.
“That was kind of a scary moment,” Drexler said. “When we came back, I had to become more vigilant. That’s one of the primary stresses on a [family] caregiver — the constant vigilance and watching, especially when you want to allow autonomy.”
For some extra help, Drexler worked with the Wolk Center for Memory Health in Boston, where her husband had access to a team of multidisciplinary professionals.
“We had a few things in place,” she said. “But then, I went into the hospital. … I explicitly told him not to come to the hospital, that I’d be released the next day.”
Still, her husband managed to convince the senior companion he was with to drop him off at the hospital. After his surprise visit, he began walking home unaccompanied — nobody knew where he was for a while. Eventually, one of his hired caregivers found him along Concord Avenue.
That was 2023, six years after his diagnosis. It was at that point that the team at Wolk recommended he move into a memory care facility. Not ready for that step, Drexler agreed to start using home care services. Someone came to entertain him while she made dinner, offering her some time “off” from her role as his primary caregiver.
About a year later, he’d reached the point of needing guidance through every step of the bedtime routine — changing his clothes, putting on his pajamas, getting his toothbrush ready to go, and setting up his CPAP machine. It was one of those nights, after setting up the machine, she went to the bathroom to set up his toothbrush, only to find him brushing his teeth with a razor.
Drexler’s experience is not unlike that of the roughly 1.4 million family caregivers in Massachusetts who bear the physical, emotional and financial burdens that come with caring for a loved one. In her book of poetry, “Harvest of What Remains,” Drexler documents the “physical and emotional exhaustion, the anticipatory grief” that come with caring for her husband with Alzheimer’s disease.
In an effort to recognize the sacrifice and social benefit that family caregivers provide, state Rep. David Rogers, who represents Belmont, Arlington, and Cambridge, along with Rep. Michael Kushmerek, D-Fitchburg, is championing the bill, An Act Supporting Family Caregivers.
“Caregivers, as our society is aging and life expectancy, is increasing [is] … placing a large amount of burden on family caregivers,” Rogers said. “This is a problem that’s not going to go away.”
The bill, which received a favorable report from the Revenue Committee and is presently in the Rules Committee, would provide up to $1,500 in tax credits to family caregivers with incomes of $135,000 or less (or $250,000 per household). It also provides provisions protecting family caregivers from discrimination and includes an unemployment insurance provision, he said. So, if caregivers have to leave work to care for a loved one at home, they can qualify for unemployment insurance.
And, finally, the bill would establish a commission to further study ways to improve caregiving and support caregivers in Massachusetts.
“Family caregivers are stressed and often overwhelmed balancing the physical, emotional, financial and time-consuming demands required to care for their older loved one,” American Association of Retired Persons (AARP) Massachusetts State Director Jen Benson said during her testimony at the State House last fall. “This bill will provide commonsense solutions that save time and money and offer more support.”
Factoring in a variety of variables, including requirements to qualify, the bill could benefit as many as 100,000 of the state’s family caregivers, according to Rogers, using data provided by AARP.
For him, it’s as much about “good public policy” as it is personal.
“I’ve seen it in my own family,” Rogers said. “My mom lived to be 95. She had a long life, which is great, but in the final years of her life, she never went to a nursing home or an assisted living facility. We were able to keep her in the family home, but to do that required family members to all help out a lot with all sorts of things.”
Bonnie Alpert of Winchester said that when she was the primary caregiver to her husband — who moved into a memory care facility two months ago after years under her care — she had about a year during which she got help from the organization, Seniors Helping Seniors. They kept him company while she had work or meetings by taking him to lunch, to museums, or on walks.
“It costs money; not everyone can afford that,” she said. “It was a big help to me.”
Alpert said the goal of the proposed legislation is not just to provide some financial assistance to family caregivers so they can provide services for their loved ones, it’s also “so the family caregiver can take care of themselves.”
With Seniors Helping Seniors, she was able to make time for herself and her own activities, in addition to caring for her husband.
“If I had to be by myself, it would have been extremely stressful,” she said. “As it was, it was stressful. But it would have been much more stressful.”
