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Vermont Caregivers Open Their Homes to Strangers

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    Paulette Major, right, talks with her caregiver Flo Dorr at home in Groton, Vt., Thursday, April 12, 2018. Major was placed into the Dorr home in the summer of 2017 through Vermont Comforts of Home following a year-long hospital stay while waiting to be accepted by a nursing facility. "My greatest dream is that I would go from the hospital into a family," said Major. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Former LNA Flo Dorr, of Groton, Vt., right, and her husband Robert provide care in their own home for two individuals through Vermont Comforts of Home, trying to create a comfortable, family-like environment for their charges, Thursday, April 12, 2018. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com. Valley News — James M. Patterson

Valley News Staff Writer
Published: 5/10/2018 11:36:40 PM
Modified: 5/10/2018 11:41:55 PM

Groton, Vt. — Driving west along Route 302 from Ryegate, motorists are greeted by a sign that reads: “Welcome to Groton, where a small town is like a large family.”

Paulette Major, 74, joined that family last year when she moved into the Great Road home of Flo and Robert Dorr.

The couple have cared for adults with disabilities in their home for about 12 years, but when the first of those clients — a 53-year-old woman with Down syndrome — died in April 2017, they had a room open.

About two months after her death, when the other woman in their care, Lois, 76, said, “We need a friend,” Flo Dorr said they knew they were ready.

(The Dorrs asked that Lois be identified by her first name to protect her privacy.)

The Dorrs reached out to the Bradford, Vt.-based Upper Valley Services, which is the state-designated agency providing support for people with developmental disabilities in Orange County. Upper Valley Services last year joined forces with Lincoln Street, the state-designated agency for Windham and Windsor counties, to form Vermont Comforts of Home, which aims to place adults in need of nursing home-level care in homes around the state.

It was through Vermont Comforts of Home that the Dorrs found Major, and Major found a home with the Dorrs.

“I prayed a lot for a home,” said Major, who has a mental illness that Flo Dorr declined to describe in detail out of concern for Major’s privacy.

Both Vermont and New Hampshire have Medicaid waiver programs that support home care services for at least some of those in need of care whose income qualifies them for Medicaid and have medical needs at the nursing home level. Vermont’s program is called Choices for Care, while New Hampshire’s has been dubbed Choices for Independence.

The arrangement mirrors the longstanding Medicaid-supported model matching adults with disabilities to providers in the community willing to welcome them into their homes for a stipend. The providers also manage a budget to hire people to supplement the care. Such models are less costly than nursing home care, and it allows people to remain in a home setting, ideally in their own community.

In fiscal year 2017, about 1,700 Vermonters lived in home settings through the Choices for Care program, and 1,360 adults with developmental disabilities also lived in home settings, according to annual reports produced by the Department of Disabilities, Aging and Independent Living.

At the moment, just six participants in New Hampshire’s Choices for Independence program are living in situations similar to Major’s with the Dorrs.

But New Hampshire’s Bureau of Elderly and Adult Services aims to expand use of these services, which in New Hampshire also includes the option of kinship care, which pays a family member to care for someone in need of care, Jake Leon, spokesman for the Department of Health and Human Services, said in an email.

“It is ideal for someone who has some level of independence, but needs increased support to remain in a home-like setting,” Leon wrote.

Given the Twin States’ aging demographic — census projections indicate that by 2030 about one in three Vermonters will be 60 or older and the number over 80 is expected to double — demand for nursing-home-level care is likely to grow, and home sharing arrangements such as those funded by Choices for Care are one way to provide it.

In New Hampshire, residents 65 and older will make up almost 30 percent of the state’s population by 2040, according to population estimates from the state’s Office of Energy and Planning (now the Office of Strategic Initiatives).

In both states, the increase in older residents corresponds with a decrease in the number of people of working age.

Teaching Each Other

Prior to coming to Groton, Major had been living in Central Vermont Medical Center in Berlin, Vt., for about a year. She entered the hospital after a period of declining health, which neither Major nor the Dorrs were able to describe clearly. Flo Dorr said that Major’s admission may have been related to her not taking her medication regularly and therefore neglecting herself in a variety of ways, including not eating.

Major’s hospital stay was considerably lengthened by the difficulty officials at the hospital had in finding another place for her. Her family didn’t want her to return to the Waterbury, Vt., residential care home where she had been living, Flo Dorr said. People with mental illness can sometimes be difficult to place, she said.

“The matching, connecting up with people, is something that really takes a lot of care,” said Bill Ashe, executive director of Upper Valley Services.

Major takes medication four times a day, which Flo Dorr helps her remember to do. She speaks slowly and not always on topic, but is clearly comfortable in the Dorrs’ home, which Robert, a carpenter, built above his workshop. Mounted deer heads decorate the walls. The Dorrs’ hand-painted mushrooms sit on shelves. Major has a keyboard in her room. Robert Dorr has a guitar in the living room, which overlooks a large field behind the house.

“I feel much better than I have even in my own childhood home,” Major, who grew up in the Northeast Kingdom town of East Charleston, Vt., said in an interview last month.

Major said she enjoys crafts and playing the piano. She also likes to sing, though she said she is not a professional.

“I sing for Jesus,” Major said. “I sing for anyone who’s listening.”

In addition to caring for a person’s basic needs, caregivers are also important in “supporting the things that make us want to live,” said Jessalyn Gustin, the director of Upper Valley Services’ Bradford-area program.

It took Flo Dorr about two weeks of working with Major after she first moved in last year to sort out a daily routine, which includes periods of rest necessary to help Major avoid becoming disoriented.

In the hospital, Major slept in a chair, when she slept. It was difficult to get rest with people moving around and making noise, Major said.

“I really did need more sleep,” Major said.

Gustin noted that it often can take people a while to stop “institutionalized behaviors” after they are discharged following a long stay.

Flo Dorr taught her to climb into bed under the covers, as well as some personal hygiene skills such as how to wash her face.

“Paulette had to learn a lot of stuff,” Flo Dorr said.

But, she added, “We taught each other.”

Dorr learned which activities of daily living, to use the lingo of the industry, Major is able to perform on her own. That independence has helped her to become part of the family. For example, sometimes while Dorr is in the kitchen preparing a meal, Major will read a book to Lois, who is now on hospice and bed-bound. She also spends some of her personal spending money on shared household items such as batteries and stamps.

Major told Dorr that she felt she has “always been treated like a child.” Contributing to the household in ways she can manage “makes her feel like an adult,” Dorr said.

Perks of the Program

This shared family life is one of the perks of the program, Gustin said.

“If it’s the right match, people see a benefit to their lives,” she said.

Before caring for people in their home, Dorr — who was a licensed nursing assistant — worked at the Grafton County Nursing Home in North Haverhill and at Cottage Hospital in Woodsville. Before that, Dorr also worked as a child care provider and raised her own children.

She much prefers the one-on-one or two-on-two care that she and Robert are able to provide in their home.

“I love this kind of work,” she said. “I think there’s a need for it.”

Having fewer people to care for allows Dorr to focus on all of the needs of the people in her care, she said.

“Part of that is loving them,” she said.

Dorr’s methods seem effective.

“Flo and I fit together like a glove,” Major said.

For his part, Robert Dorr helped make Major’s room her own by making a leather cover for her keyboard, hanging netting for her stuffed animals and making a potty chair for her to use at night.

A highlight of Major’s time with the Dorrs so far was meeting Santa Claus for the first time at the mall in Berlin at Christmastime.

“I just feel so amazed that I went to see Santa Claus,” Major said.

During the visit, Major chatted with Santa Claus for an hour and helped a little girl, who had previously been too scared to get close to the bearded elf, find the courage to talk with him.

“That was the greatest thing I wanted to do was help people,” Major said.

‘It’s Not Always Easy’

In exchange for caring for clients — also known in the industry as “consumers” — in their home, the Dorrs receive tax-free stipends based on the level of care each require through Medicaid. Citing privacy reasons, Flo Dorr declined to provide the amounts of their stipends.

Annual per-client contracts for home providers paid through Choices for Care typically range between the “upper $20,000s to the mid-$30,000s,” said Marie Zura, the director of Vermont Comforts of Home.

Home providers also receive a taxable room and board payment paid through Social Security, which is usually about $700 per month, Zura said. Major and Lois also have some spending money for personal items, undergarments and medicine. Spending money is usually about $130 per month, Zura said

The agency also provides oversight and training, Zura said.

The income is not comparable to what someone might consider a reasonable hourly wage, Gustin said. It does not include retirement, health insurance or Social Security.

But, Dorr said she doesn’t look at it that way. If she did, she wouldn’t do it.

It does explain, though, why at 74, Robert Dorr continues to run a carpentry business, which “helps make ends meet,” he said.

He predicted that he’ll be working another 10 years, until he’s 84.

“It’s not always easy,” Robert Dorr said. There are “bumps in the road all the way along.”

Annie Crowley, who with her boyfriend cares for two adults in their home in Wells River, agrees that the work of being a home provider is difficult. Because of the lack of benefits provided to home providers, Crowley also works at the Grafton County Alternative Sentencing.

“If something happens and you fall sick, your job is over,” Crowley said in a March phone interview. “That’s why I always carry a second job.”

Crowley, 45, has been providing care in her home for about 28 years. She said she’d like to offer care to a third adult because she has the room, but doing so is against regulations without her undertaking significant building improvements, such as installing a sprinkler system.

There is a need, though, Crowley said. She said she gets calls at least once a month from families trying to figure out how to care for an aging loved one. The challenges they are juggling include the stress of caregiving, their own health and their work and other responsibilities. It can also be costly and difficult to find someone else to provide care in the home of the aging or ill person.

“We’re going to have to get creative” to address all of the needs of the region’s aging population, Crowley said.

“I’m going to be there someday,” she said. “How are we going to take care of ourselves? It’s a scary thought.”

It is a sacrifice to care for people in her home, Crowley said. For example, she said she can’t take her kids to the bus stop because she can’t leave the adults she cares for alone.

“When you dedicate your life to being a home-care provider you really are dedicating everything to it,” she said.

Finding a Balance

Part of welcoming clients into their home is helping them to learn and follow the rules of the house, Robert Dorr said.

For example, Dorr said, it’s important that they all have some quiet time in the late afternoon. By that time of day, he said, “I’m ready for an adult beverage.”

Delineating personal space and private time is very important for everyone involved. Regulations require that clients have a room to themselves, which have doors that can be closed. The Dorrs’ bedroom is also off-limits, Flo Dorr said.

The house rules also require that everyone have privacy while they are on the phone.

“I don’t want Paulette to worry about stuff I’m dealing with like her meds,” Flo Dorr said.

Choices for Care brings in some respite care, with the clients remaining in the home under the eye of substitute caregivers. The Dorrs have trained three such providers, but it can still be difficult to get an entire weekend away. More often, the Dorrs try to sneak in a lunch together when they have a few hours free to go grocery shopping.

“You have to take care of yourself or you can’t take care of people,” Flo Dorr said.

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.




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