It’s estimated that 26,000 Vermonters are caring for someone with dementia, a condition which makes it hard to think clearly and remember.
According to the Alzheimer’s Association of Vermont, these volunteer caregivers save the state and federal government hundreds of millions of dollars in nursing home costs. Yet support services remain patchy, and caregivers often feel overwhelmed and ill-equipped.
Caregiving is not a job most people plan for.
Sheryn, a Rutland Town mother of two, recalls how it began for her: "My sister and I started the conversation of, ‘Gosh, mom's declining, what are we going to do?'”
Sheryn doesn't want to use her last name in this story, because she doesn't want to embarrass her mother, who has Alzheimer’s disease.
“I think somebody said something about dementia and Alzheimer's being the 'long goodbye,'" Sheryn says. "It is, because I'm already grieving my mother's death. And she's still alive.”
"I'm already grieving my mother's death. And she's still alive.”Sheryn, a Rutland Town resident who cares for her mother who has Alzheimer's
But Sheryn’s ability to grieve has been sidetracked by caregiving duties.
“You know, trying to check in with her if I can during the day, and if I’m having a really busy day, I can’t check in with her on the phone until the end of the day," she says. “Stopping almost daily on my way home, stopping every weekend and making sure that she had all groceries that she needed, or that she's been taking her medicine, or you know, picking up the medication that she hadn't been taking during the week so she didn't mix it up.”
Sheryn works full-time, and her kids are teenagers. She says constantly worrying about her mom on top of everything else made her feel anxious and overwhelmed.
“And you get angry for this being kind of the lot,” she says. “You know, I love my sister and brother. And just because of logistics, they can't be here to help. So I would find myself getting angry at them.”
Then she’d feel guilty for getting mad, something experts say is common.
“People who have dementia have behaviors that are hard on us,” says Cinda Donton, who counsels caregivers in Rutland and Bennington counties for Rutland Mental Health Services and the Southwestern Vermont Council on Aging. “Those of us who find ourselves in the role of a family caregiver, we were never trained for this. All of a sudden, it’s thrust upon you.”
Donton works with clients to help break the cycle of negative emotions and lessen the stress of caregiving.
Improving communication, she says, is one way to do that. People with dementia repeat themselves, forget and get agitated, which can be irritating.
“So let's say that you tell your husband or your wife, ‘We're gonna go to the doctor today.’ And he says, ‘We were just there two weeks ago,’" Donton says.
You might be tempted to remind your spouse that that visit was in fact six months ago. But Donton says don't correct someone with dementia. It doesn't help, she says, and will just make them feel bad.
Instead: "Say you say, ‘It's really important that you stay well, because I really want to keep you around,'" Donton says. "Or you say, ‘I appreciate that you're willing to do this, because I know you don't enjoy it.’”
Donton says this approach is validating, and it helps strengthen the caregiving relationship, which is crucial.
Something else that’s helpful? Stay in the moment. With Alzheimer’s and other illnesses that cause dementia, the future is scary, so Donton tells clients to focus on what’s good in their life right now.
“Cultivating a practice of noticing what you're grateful for and rehearsing it makes it bigger, and emphasizes it," Donton says. "Like, you know what, he's still getting at least five hours of sleep a night, and that's really helpful.’”
And she encourages caregivers to say those compliments out loud to the person they're caring for.
“Those of us who find ourselves in the role of a family caregiver, we were never trained for this. All of a sudden, it’s thrust upon you.”Cinda Donton, caregiver support person for Rutland Mental Health Services
Donton says it’s also vital to address the isolation and burnout caregivers feel.
“One of the things that I work with caregivers a lot on is helping them to understand why it's so important for them to take care of themselves, and to let that actually be their priority," she says.
Like flight attendants who remind us to put on our own oxygen mask first.
Donton tells caregivers to get out with friends, take breaks, do things that bring them joy and don’t be afraid to ask for help.
But she also knows doing that is not always easy. In some communities, respite care may be hard to find. And behavioral changes brought on by dementia can be embarrassing.
Donton says she remembers a client who used to bring her husband with her when she ran errands. At first, he’d stay in the car. But then he started getting out and urinating in public.
"So then what do you do? Right?” Donton says. “I hear this a lot from caregivers, that it's difficult to talk with other people about their experience because they really feel like people don't get it.”
Donton says it makes the situation very isolating.
Talking to a counselor, like Donton, or joining a local caregiver support group can help.
But those services may not be available in every part of the state.
Luba Routsong says she had to fight to get her husband Tom tested for Alzheimer’s, and was shocked at the lack of support once he was diagnosed, even though the couple lives in Chittenden County.
“Where's the brochure?" Routsong says. "Where is the pamphlet that says, 'Now that you know this, this is where you can go?' It wasn't there. And I was astounded for the next year how hard it was to find resources.”
The University of Vermont Medical Center is trying to address that by expanding services and creating a Dementia Family Caregiving Center.
Lori McKenna, a clinical social worker involved in the project, says they want to become a gateway for people across Vermont with information, dementia education classes and counseling. (While they don't have a website up yet, McKenna says you can call 802-847-2466.)
“Prior to the pandemic, our groups were all in-person and really served Chittenden County,” McKenna says. “But now that we are proficient with telemedicine, we can offer groups to anyone in the state.”
McKenna says they're creating peer mentoring, so new caregivers can learn from those who are more experienced.
Because of the shortage of social workers trained in gerontology and the needs of caregivers, she says they are also investing in workforce development to incentivize and attract more students to the field.
Megan Polyte, who directs policy for the Alzheimer’s Association of Vermont, applauds those efforts, but says more is needed.
"I think we have to talk about older Vermonters, and oftentimes they're not talked about," Polyte says. "So step one is that we're talking about this, and that we're recognizing there's a really significant need."
"I think we have to talk about older Vermonters, and oftentimes they're not talked about. So step one is that we're talking about this, and that we're recognizing there's a really significant need."Megan Polyte, Alzheimer's Association of Vermont
Even with UVM's expanded services and the work being done by state agencies and Vermont's five area agencies on aging, Polyte says caregiver support services remain difficult for many to access.
It’s why she hopes lawmakers will approve proposed legislation to create a state dementia care coordinator. It’s a position budgeted at $150,000 a year.
“We need somebody who can look at all of the pieces that come together and figure out what what's working, what's not working, how we have to expand, where we have to expand," Polyte says. "And I think that that point person would really make us so much more efficient, because it would allow us to focus our work where it's most needed and is going to have the greatest impact.”
From 2020 to 2025, she said the number of Vermonters 65 and older who have Alzheimer’s disease is expected to grow by 30% — and those who will have to care for them will need help.
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