Caregivers adapt during pandemic

How those responsible for taking care of elderly family members have coped during COVID-19.

As socialization circles shrink, people hunker down at home, and our world becomes virtual, vulnerable populations have felt the weight of the pandemic. For family caregivers, taking care of an elderly relative throughout this time takes a mental and physical toll. They have been forced to shoulder all responsibilities for those they care for, while dealing with issues of isolation and fear themselves.

On Martha’s Vineyard, many caregivers rely on services at the M.V. Center for Living (MVCL) to ease their burden. MVCL provides services, programs, and activities for Islanders 55 and older through a partnership with the town Councils on Aging and other related organizations. They serve and support residents who are impacted by aging and impairment and their caregivers, offering support as clients progress through disease.

Prior to the pandemic, MVCL offered a supportive day program at the center for 27 clients. The VTA lift service brought clients to the center for a full day of activities. In March, the center was forced to shut down, and MVCL moved virtual. They currently provide virtual programs four days a week for two hours, and a caregiver support group on Fridays.

“It’s been a real challenge, but I think we have a good system going,” MVCL executive director Leslie Clapp said. “People are pleased. I am very proud of not only our staff, but our clients and their resilience. They all have a willingness to try something new.”

Everyone at MVCL has been adapting to the new format. A robust schedule of Zoom programming that includes chats, exercise classes, bingo, and virtual picnic lunches has taken the place of the day program. Turnout has been strong.

“The goal of our programming is to provide human connection,” Clapp said. “People can see their friends, talk with them, and have a usual back and forth. People need to know that we are here, and they are a part of this world and community. We haven’t given up on them.”

The Zoom programming allows community members to stay connected with those they are familiar with. MVCL now serves 32 clients virtually, providing personalized care to each individual they serve. The center purchased tablets to lend to clients so they could participate in programming, and sent individual staff members to talk through getting online with those who were struggling at a distance.

“It’s an amazing thing when you have a whole group of people who cover different ranges of a disease, and you see how supportive they are of each other,” Clapp said. “They are very understanding of each other; it’s quite inspiring.”

Because the Center for Living serves seniors who are experiencing cognitive issues, some of them are not aware of the complexities of the pandemic. Clapp notes that most understand what is happening, but frequently need to be reoriented with the circumstances. Caregivers, on the other hand, are feeling the weight of the situation.

“The caregivers are more stressed, frustrated, and anxious,” Clapp said. “They’re afraid.”

Carolyn Flynn is an Edgartown resident who lives with and takes care of her husband Tom. Tom has dementia, and has been involved with MVCL for three years. Prior to the pandemic, Tom took the VTA bus to the center five days a week.

“The Center for Living was a godsend,” Carolyn said. “One of the most important things you need when you are living with someone with dementia is the socialization. Otherwise they just wither away, they cannot carry on a conversation.”

Since MVCL has gone virtual, Carolyn worries Tom is losing that socialization. He loses interest in the Zoom programming, and does not like staying on the calls. The dynamic at home has shifted.

“[MVCL] makes a huge difference in our lives as caregivers because it gives us a break,” Carolyn said. “There is no way I can run a household and babysit [my husband], and that’s what it has amounted to lately.”

Carolyn is responsible for Tom’s daily needs, including meals, and makes sure she socializes with him when she can. The isolation at home has disrupted the balance the couple found before the pandemic.

“It was difficult at first, but now we are getting patterns in place,” Carolyn said. “I don’t really miss what life was like so much anymore, but I know [Tom] is missing it. I’ve noticed that some of his skills have gone downhill since he is not physically going into the center anymore. He doesn’t have the same interest in daily life that he did before.”

Brenda Costa, a Malboro resident whose parents, Islanders Joseph and Vivian, are involved with MVCL, has also noticed her parents’ deterioration. Costa cared for her parents from a distance during the pandemic, as she was unable to visit them for a month as she does each year.

“When I eventually got down there to visit in August and check in on them, I could tell they had declined during this whole lockdown,” Costa said.

Vivian was attending the day program at the center three days a week, giving Joseph time to himself. Since the pandemic, Vivian has been participating in the Zoom programing, and particularly enjoys the weekly bingo. However, it’s not the same as going into the center.

“She loves it there, and she really misses it now,” Costa said. “She was really thriving there.”

Costa has also been struggling with being away from her parents for this extensive time, and missing giving hands-on care.

“Mentally it was tough not being able to go visit,” Costa said. “My mom really looks forward to me coming for an extended period of time, and she was pretty sad about the fact that I wasn’t coming.”

Costa was staying in touch with her parents over the phone and through Zoom before she was able to visit. She also relies on Elder Services and the Island community to keep her in the loop with her parents’ care.

“I have connections on-Island, so I am able to get to my parents that way, just through other people, fortunately,” Costa said.

Vineyard Haven resident MJ Munafo is also caretaking from a distance. Munafo is the main caregiver for her mother-in-law Lucy. Prior to the pandemic, Munafo visited Lucy in her home in Woodside Village every day to take care of her appointments, medications, and any day-to-day tasks. Now she has limited in-person contact with her mother-in-law.

“It’s been hard for me,” Munafo said “It’s been a huge shift in how much time I spend with her, but that’s the way it is. She’s doing pretty good right now, but this experience has changed her.”

In May, Lucy broke her hip and was hospitalized. Munafo was unable to be by her side.

“We were not allowed to be there with her, and that was extremely challenging, especially with Lucy’s dementia,” Munafo said.

After she was recovered, Lucy returned home, but her routine was not able to return to normal. In recent months, Munafo had to enlist at-home care in order to fill the gap.

“The biggest change for us is that not only has her lifestyle changed, but we have had to rely on a level of care that definitely will not be financially sustainable for awhile,” Munafo said. “But it’s what we have to deal with right now.”

Lucy attended the MVCL’s day program three days a week. She was highly involved in the Island community, and attended weekly lunches at the Edgartown Council on Aging. Since the pandemic, she has been missing the daily socialization.

“Even if she didn’t remember that she went [to the center], she was happy, she was cared for, and she was loved,” Munafo said. “It’s really been a hole in her life since this all stopped.”

Lucy recently got the technology to participate in the MVCL Zoom activities, and appreciates seeing familiar faces on the screen. Munafo is now able to see Lucy a few days a week at her home, with masks on. She is vigilant about being careful and staying safe, due to her contact with Lucy.

“It’s been hard for me,” Munafo said. “It’s been a huge shift in how much time I spend with her, but that’s the way it is. She’s doing pretty good right now, but this experience has changed her.”

All three caregivers have been particularly careful about who they come in contact with, and hesitant about interacting with society as places have opened up, because of the vulnerability of those they care for.

“It’s difficult, it’s boring, and there is no such thing as a nice conversation with anyone in my house right now,” Carolyn said. “Sometimes I get kind of down just because it’s not very interesting.”

“It’s been pretty difficult, because I’ve had to talk [my parents] off the edge, which is hard when you are on the edge yourself,” Costa said.

MVCL plans on running Zoom programming side-by-side with the in-person Center when it reopens. However, they are currently operating with no revenue. When the daily programing shut down, MVCL was unable to collect revenue through Elder Services or private pay. They continue to provide programming because they believe the value from the services they provide is essential.

For now, clients and caregivers are continuing to cope with the situation.

“I’m one of those people who takes it one day at a time,” Munafo said. “We are all just trying to do the best that we can.”