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.”

WOOLWICH, Maine (WMTW) – Five people, including two infants, were hurt in a crash in Woolwich Friday morning.

Police say the crash happened at about 9:42 a.m. at the intersection of Route 1 and Montsweag Road.

Investigators say a 2008 Subaru Outback, driven by a woman from Woolwich, was trying to turn left onto Route 1 when she pulled out into the path of a 2009 Chrysler 300 headed north.

The Chrysler was driven by a woman from Lisbon. There was also an adult passenger in the front and two infants in car seats in the back seat of the Chrysler.

Police said all five people involved were taken to Maine Medical Center, the extent of their injuries were not clear.

The road reopened to traffic at about noon.

The crash was still under investigation.

Copyright 2024 WABI. All rights reserved.

Well, I’m about 75 miles into Maine at the moment and staying in Camp 43 Hostel just outside of Rangeley. Lovely place hosted by Ken and Jill. Worth a stay if you’re hiking in the area. I also wanted to mention the Cabin in East Andover where I spent 4 nights slack packing some trail sections. I needed a break from my heavy pack after hiking through the Mahoosucs, which I’ll mention later. Honey is the owner of the Cabin, and she offers a delicious and filling dinner and breakfast. The breakfast is actually prepared by Diane, a hired cook from Georgia. Needless to say, her biscuits and sausage gravy are delicious, and my wife Michele would have loved the breakfasts there. Honey is something of a hiking legend having grown up spending summers in the White Mountains. She knew Earl Shaffer, the first to thru hike the AT. I looked forward to Honey’s stories every night at dinner while I stayed there.

The Mahoosuc Range

The Mahoosuc Range is the first set of mountains one encounters when entering Maine. I won’t make any comparisons to the Whites but let’s say that the Mahoosuc offered some of the most steep and challenging hiking that I’ve experienced so far on the AT. On top of the ruggedness, there are alpine bogs on many of the summit ridges. These are transited by so called bog bridges, many of which are broken, rotted, or have sunk below the surface. I successfully navigated these bogs, except one in which my right boot sunk above my ankle allowing bog mud to submerge my foot. Others fared worse than me such as the hiker I met with the trail name “Bog Ba**s”. You can imagine the story behind the origin of his name. The Mahoosucs feature Mahoosuc Notch, the so called toughest mile on the trail. The notch is a jumble of boulders one has to navigate without a fixed path, climbing under and over the rock hoping you don’t end up at the top of a 15 foot vertical drop. Hikers like to describe the experience as fun, which I agree with to an extent. But it got a little old about 2/3 of the way through the notch. Once one finishes the notch, there is an immediate climb up Mahoosuc Arm, one of the steepest climbs of the entire AT. On this hiking day, I covered only 5 miles, but it took me all day!

An alpine bog with bog bridges

A fellow hiker navigating the boulders of Mahoosuc Notch

Sunset over Speck Pond where I camped after a tough hiking day in the Mahoosucs

Nature Update

Exciting update. I saw a moose that crossed the path in front of me. It was a cow and she did not seem perturbed by my presence. I knew the moose were out there because I’ve been seeing their scat on the trail since entering Vermont. Beyond the moose, there is always the birdsong, the music of the AT. I’ve also enjoyed the many Spruce Grouse I’ve been seeing in northern New England.

Can you see the moose hiding among the spruce trees?

How about the Spruce Grouse?

Although I still have over 200 miles to hike before Katahdin, I am starting to feel the end of this northern segment approaching. The southern section is a different story that I’ll tackle later. I feel like I’ll have to keep myself from getting too excited at Katahdin even though I’ll be boiling inside.

West Baldpate Mtn with a full 360 degree view from the summit. One of my favorite views on the trail so far

The weather has taken a turn for the better with sticky humid air replaced by pleasant dry air and the forecast for the next few days is excellent. Ahead, I have Saddleback Mtn with its alpine ridge, the Crockers, and the Bigelow Range. Soon I will have hiked 1,000 miles! Onward towards Katahdin.

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