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Pandemic increases strain on dementia patients’ families, caregivers

  • Lynn Roberto, of Springfield, Vt., visits with her mother Marie Roberto at the Cedar Hill Continuing Care Community in Windsor, Vt., on Friday, July 31, 2020. Due to the pandemic, visits take place outdoors at the facility. Roberto needs to schedule a time slot to visit her mother. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Don Sinclair walks with his mother Kay Sinclair in the backyard of their home in Bradford, Vt., on Wednesday, Aug. 5, 2020. They often take time to enjoy the view from the yard. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Saying their goodbyes after a visit, Lynn Roberto, of Springfield, Vt., blows kisses to her mother Marie Roberto at the Cedar Hill Continuing Care Community in Windsor, Vt., on Friday, July 31, 2020. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Don Sinclair weeds flower beds while his mother Kay Sinclair watches at their home in Bradford, Vt., on Wednesday, Aug. 5, 2020. Kay Sinclair had spent four days a week at the Oxbow Senior Independence Program before the pandemic. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Lynn Roberto, of Springfield, Vt., has her temperature checked by Annie Preece at the Cedar Hill Continuing Care Community in Windsor, Vt., on Friday, July 31, 2020, before an outdoor visit with her mother Marie Roberto. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

Valley News Staff Writer
Published: 8/8/2020 9:34:39 PM
Modified: 8/9/2020 9:08:27 PM

Before the pandemic, Kay Sinclair spent four days a week at the Oxbow Senior Independence Program, where she would socialize with other participants and staff, play games, make crafts, get a shower and eat.

During those six or seven hours a day when the 89-year-old Bradford, Vt., resident, who has Alzheimer’s disease, was at the program, her son Don Sinclair and daughter-in-law Jenn Grossi would get a break.

“It was awesome,” Don Sinclair said recently of the OSIP adult day program, which is on Route 5 in Newbury, Vt.

Kay Sinclair, who uses a walker, needs help getting to the bathroom, preparing her meals and calming her anxiety when her son and daughter-in-law sometimes stray from her side. Don Sinclair, who is in his 60s, and Grossi, who is in her late 40s, are musicians and music teachers, and prior to the pandemic they also rented out space in the home that they share with Kay through Airbnb to help make ends meet.

But OSIP, and other adult day programs and many in-home caregiving services, all had to close down or reduce their hours beginning in mid-March due to the COVID-19 pandemic. OSIP has not been able to reopen due to the challenges of safely operating a program geared for older adults with chronic health conditions, who are at a higher risk of developing serious symptoms should they contract COVID-19.

And a couple of other similar programs in Vermont have closed permanently in recent months.

“It’s not looking any better to get open anytime soon,” said Julia O’Donnell, OSIP’s executive director.

As a result of these closures and cutbacks, caregivers of people with Alzheimer’s disease have seen their stress levels rise. People with dementia have had their routines altered, which in some cases has accelerated the decline of their cognitive abilities.

Because of COVID-19 it has become more difficult for people to move into assisted living, nursing homes or other facilities. And relatives of loved ones with dementia who are living in a facility have seen their visits limited at first to phone or video chat, and more recently to socially distanced outdoor visits, making it challenging to stay in touch.

“I’ve talked to caregivers who have just struggled,” said Mark Boutwell, who directs social services for Senior Solutions, Council on Aging for Southeastern Vermont, which offers support for seniors in Windsor and Windham counties.

“They’re in tears on the phone with me. They don’t know where to turn. When they do reach out, they’re told that the service provider is sorry, but they can’t send staff into people’s homes,” he said.

Even making a phone call to ask for help is a challenge for some caregivers, Boutwell said. He’s had trouble having a full conversation with one woman because her husband interrupts them by taking all the pans out of the cupboards or climbing the stairs.

During the pandemic, many programs to support caregivers of people with dementia have moved online, including those offered by the Dartmouth-Hitchcock Aging Resource Center and the Alzheimer’s Association.

For Carol Wharton, a 76-year-old retired nurse who cares for her 77-year-old husband at their home in the Grafton County town of Landaff, N.H., online programs offered by the Aging Resource Center and Dartmouth-Hitchcock have kept her connected to other people caring for loved ones with Alzheimer’s disease or who have breast cancer, as she does.

“The one good thing with COVID is Zoom,” Wharton said, referring to the video conferencing software popularized by the pandemic. Don Wharton, who served as president of Plymouth State College from 1993 to 2006, was first diagnosed with Alzheimer’s disease more than five years ago.

Support through Zoom

Carol Wharton had attended the support groups in person until COVID-19 hit. She said the group for caregivers, which meets once a week on Wednesdays, offers an opportunity to share “difficult and painful” experiences with others going through similar struggles. Don’s disease has progressed to the point where he doesn’t understand much of what his wife says, so she usually has him sit on the other side of the porch during the Zoom meetings.

Wharton has tried to keep her husband of 34 years engaged in various activities, going for walks, picking up groceries curbside, doing yard work or folding laundry. But she is exhausted by the end of the day and she no longer has much time to herself to garden or make art as she once enjoyed. Don follows her around the house, asking to help with various tasks but unable to actually do so. Their adult children check in by phone and video chat, but live too far away to help in person.

Before the pandemic, Wharton relied on a weekly respite program offered by a nearby church and could schedule respite care for a full day or even overnight as she needed at Summit by Morrison, a care facility in Whitefield, N.H. Recently, she started having private caregivers come to their home for four hours on Mondays and another four on Fridays. She often attends Mass on Monday mornings, and on Fridays, when she has the house to herself, she has four hours to catch up on chores such as filing paperwork.

There are “so many things I can’t tend to,” she said.

Though her husband is on a waiting list for a spot at the facility in Whitefield, Carol Wharton said she can’t imagine him there. The price of about $7,000 per month out of pocket is also a deterrent, especially when she would still need to maintain her own household, she said.

She isn’t alone in at least entertaining the possibility of moving her loved one into a facility. Calls requesting information have increased at Cedar Hill Continuing Care Community, said Patricia Horn, the Windsor facility’s executive director.

Bringing new residents into senior living facilities during the pandemic isn’t easy, Horn said. In Vermont, residents are required to quarantine in their rooms for 14 days when they first arrive. Quarantine is especially challenging for people with dementia, Horn said. It’s also difficult for staff to put on personal protective equipment to care for them while they’re in quarantine. Because of the challenges, Horn said Cedar Hill stopped bringing in new memory care residents for a time and now brings new people only gradually.

“We’re doing our best,” she said.

While there haven’t been COVID-19 outbreaks in senior living communities in the Upper Valley that have caused the high rates of death and illness in other regions, residents and their families and caregivers still have been affected by the altered procedures.

Before the pandemic, Lynn Roberto, a 66-year-old Springfield, Vt., resident, had few restrictions on seeing her 90-year-old mother, Marie, who lives in assisted living at Cedar Hill. She’d visit whenever and for as long as she wanted, and they would go shopping and get lunch together.

Roberto said her mother’s condition declined during the early part of the pandemic due to isolation. Marie doesn’t have a formal dementia diagnosis, but she is forgetful and unable to live independently, Roberto said.

To limit the spread of the virus early on, residents were required to eat meals in their rooms and group activities were canceled. Roberto said her mother seemed depressed and slept more than usual, which made her more confused.

Limitations on visits

From mid-March until June, Roberto had to make do with phone calls and waving to her mother from the parking lot. Now, she can have scheduled in-person visits, but she’s restricted to a half-hour. They both have to wear a masks and sit 6 feet apart. No hugging is allowed.

“Now that I can go up there, that’s better,” Roberto said. “It made me cry to see her in a window. Waving to me, it was just pathetic.”

Still, Roberto, a member of the parole board for the Vermont Department of Corrections who is now working from home, said she finds it frustrating to have to schedule visits in advance and to have to stick to just 30 minutes. It’s also hard not to be able to tell her mother when these restrictions will end or to help her cut her hair or do her nails for her.

“Before (COVID), anything she’d ask, I do that,” Roberto said. “I just have to keep saying I can’t.”

In at least one case, family members decided to move a loved one with dementia out of a congregate living facility during the pandemic. In April, Thetford resident Cat Buxton drove to an independent living facility in Connecticut and picked up her 78-year-old father Mike Duffy, who began having hallucinations last fall that Buxton said she believes were due to Lewy body dementia.

She picked him up because she said she feared that Duffy’s anxiety and delusions would worsen if he was forced to live out the lockdown without visitors in the facility. She brought Duffy to Thetford “expecting to take care of him for a good five years,” she said.

Buxton told her father he had “superpowers” to explain why she couldn’t see the things he saw through his delusions. She helped Duffy, who was 46 years sober, to use Zoom to connect with his Alcoholics Anonymous group in Connecticut. And she and her husband managed to find him and bring him back when he hitchhiked to White River Junction and got on a bus bound for Hartford, Conn., over Father’s Day weekend in an apparent attempt to get to his childhood home in New York City.

Buxton was in the midst of organizing an informal group of friends and neighbors to assist in providing respite care for her father when he had a heart attack and died in her arms on July 16, her 48th birthday.

“If COVID hadn’t happened, he might have passed away in a facility,” she said. “I might not have gone to get him. A blessing of COVID is that I managed to have my father with me.”

Paid caregivers also have had to adjust to pandemic times. Lyme resident Nicole Collins cares for a woman with early-onset Alzheimer’s disease who lives at The Village at White River Junction. While before the pandemic, Collins would often take her client out to the Path of Life Garden in Windsor, the greenhouse at Dartmouth College or to visit friends, they are now more or less stuck in the Currier Street facility. Collins also helped her client to use electronic devices to connect with loved ones via video chat. Within the past month or so, as restrictions have loosened, her client has been able to see some people in person, Collins said.

But even with the adjustments necessary to help her client adapt, Collins said work hasn’t gotten harder.

Instead, “my personal life is harder,” she said.

Because she works in a senior living facility, Collins said she needs to take special care to avoid contracting the virus outside of work. While some of her friends have started getting together socially and some families are preparing to send their children back to school, Collins is not.

“I have to live by stricter rules to keep everyone safe,” she said.

Her husband will continue to watch their 3-year-old and 8-year-old and monitor their remote learning, Collins said. Her job has made navigating pandemic times more difficult.

“But I’m also a pretty positive person, and this isn’t forever,” she said. “We’re humans, we adapt. We make this work. We do what we’ve got to do. Take one day at a time.”

In Bradford, the Sinclair/Grossi household has found some stability by finding an in-home caregiver who comes twice a week for five or six hours, and who even stayed overnight recently so they could go camping. Kay Sinclair is still able to enjoy riding in the car looking at the scenery, knitting simple scarves, doing basic exercises and listening to music outside near a friend’s pond. One especially bright spot for her has been getting to spend time with her stepgranddaughter Sage Reger’s dog, an Australian shepherd named Krispie.

“It’s a lot of effort, but it’s pretty stable,” Don Sinclair said. “We keep fine-tuning it.”

Resources for people affected by dementia are available online at dhaging.org and alz.org. The Alzheimer’s Association also operates a 24-hour helpline for people with dementia and their caregivers, 800-272-3900.

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

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