Kristy Basso sets a timer for 25 minutes any time she does a chore outside her West Paris home. As the primary caregiver for her 77-year-old mother, who has dementia, Basso is worried about leaving her mom alone for too long.

Earlier this year, when two of her five children, who are both in the military, were going to be stationed in the same place at the same time, Basso wanted to take a rare vacation. But she had to “jump through hoops” to find a caregiver who could watch her mom, Kathleen Parsons. That was only her second overnight trip since 2020.

With assistance from a pilot grant program called Respite for ME, Basso can now pay a caregiver to spend three hours with her mom every other week.

Although participants in Respite for ME say the program provides a welcome breather, it’s set to end on Sept. 30, and it will be up to the legislature to decide whether to permanently fund it.

“I’m kind of dreading that because I won’t be able to have someone come in anymore and I’ll just be more tired,” Basso said. 

Respite for ME was funded through Gov. Janet Mills’ Maine Jobs & Recovery Plan, using $5.1 million in American Rescue Plan funds, and began enrolling caregivers in October 2022. The two-year program offers grants up to $5,171 to those providing care to a loved one at home.

In addition to paying for temporary caregivers, the funds can be used for counseling, training, financial guidance and assistive technology.

At least 23 nursing homes in Maine have closed over the past decade, and concerns about the quality of care at assisted-living facilities have grown.

As the state’s population — the oldest in the nation — continues to age, the responsibility to care for older adults could increasingly fall on family caregivers.

The Alzheimer’s Association estimates that 51,000 caregivers in the state provided 87 million hours of unpaid care last year, valued at $1.9 billion. 

Drew Wyman, executive director of the Maine chapter of the Alzheimer’s Association, said caring for loved ones with dementia comes with an extra emotional toll.

“You don’t know what you’re going to get when you’re dealing with someone with cognitive decline,” he said. “And the bulk of this caregiving in Maine falls on family members.”

Taking care of yourself

Dr. Susan Wehry, who directs AgingME, a geriatrics workforce enhancement program at the University of New England, said data has shown that respite care is “vital.” She applauded Maine for giving participants a lot of latitude in how the respite dollars can be spent, noting that limiting grants to medical needs isn’t as effective.

“One of the self-defeating beliefs is ‘nobody can take as good of care of my husband as I can,’ ” Wehry said. “While that may or may not be true, it is also true that if you don’t take care of yourself, you won’t be able to take care of him for long, either.”

A state-funded respite program for low-income Mainers who care for someone with Alzheimer’s or dementia has been in effect for decades.

Respite for ME was intended to expand the program to include people caring for individuals over 60; those caring for people of any age with dementia; and those caring for adults with disabilities.

Relatives over age 55 who provide care to someone else’s children are also eligible. There is no income criteria, but the caregiver must not be getting paid for the care and must have suffered economic hardship because of the COVID-19 pandemic.

The grants are administered by the state’s five nonprofit areas on aging, including SeniorsPlus in western Maine.

Betsy Sawyer-Manter, president and CEO of SeniorsPlus, said she hopes to see the program continue, noting that those providing in-home care deserve support.

“This is a huge undertaking and with the continual growth of the older Mainer population as well as grandparents providing kinship care, it is vital for these unsung heroes,” she said.

So far, 1,072 participants have received a total of more than $2.3 million, according to the Department of Health and Human Services. An initial report published after the first year of the program found that three-quarters of the recipients at the time identified as women and 63 percent made less than $35,000 a year. 

The labor of caregiving

After her mom was diagnosed with Alzheimer’s disease in 2017, Basso eventually gave up her job as a private-duty nurse to care for her full-time. 

Her family doesn’t qualify for any of the state’s income-based waivers, so Basso provides the care without compensation. She said she’s fortunate to have income from her husband’s job: “If I was a single mom, I wouldn’t be able to do this at all.”

A recent survey of Maine caregivers found that more than half reported that caregiving was somewhat or very much a financial strain, and nearly 60 percent took time off work, went in late or left early to provide care.

A progress report on the Respite for ME program’s first year found that the funds improved the mental health of participating family caregivers. Half of them reported lower burden scores. High stress scores decreased 7 percent; high depression scores decreased 9 percent; high financial strain decreased 13 percent; and negative impacts on job performance decreased 16 percent.

In addition to some respite care, Basso has used the grant money to buy her mom a bidet, a handrail for the stairs and a bench for the shower. 

Basso, who was a nurse for 20 years and worked in dementia wards of nursing homes, said her mom would qualify for a nursing home, but neither of them wanted that. Her mom also worked as a nurse and had made it clear she didn’t want to end up in a nursing home.

“While working in a nursing home, you’re always doing the best that you can. However, you end up having more patients than you can care for as well as you want to,” Basso said. “As a nurse, you have 30 people on your floor that you’re responsible for, and I know that my mother just wouldn’t thrive in an environment like that.” 

She said she’s fortunate to have the skills and knowledge to care for her mom, but said there are times she loses patience and has to walk away for a moment. It’s like caring for a child, Basso said, but in reverse.

“I do it because I love her. She’s always loved me and it’s the best that I can do for her,” Basso said. “But it doesn’t mean that it’s easy.”

As nursing homes close, Basso expects more families will care for loved ones at home, which she worries could lead to more elder abuse and neglect. People who don’t have a background in caregiving may get frustrated more easily and lash out, she said. 

Basso said there should be more resources so people understand how to deal with certain behaviors.

A survey by the Alzheimer’s Association found that two-thirds of dementia caregivers reported difficulty finding resources and support, Wyman said.

The organization offers a free 24-7 hotline (800-272-3900) staffed by clinicians and specialists that provides support and information for family caregivers, as well as free training sessions and virtual support groups.

Wehry said there’s been a recent shift in caregiver training to focus more on dementia-related behaviors and how to understand them. Her training program at UNE emphasizes the notion of “respite with, not respite from,” which means creating opportunities for caregivers to take a break with their loved one, such as eating at a “dementia-friendly restaurant.”

If society were more accepting of people with dementia, she believes, that would lessen the demand on family caregivers and reduce the need for respite services.

“There will be those times where you need a break. That’s OK,” Wehry said. “But a healthier society would be where you need fewer of those breaks because you’d be able to have a good life with the people that you’re supporting.”