For self-care, Betty Perrow wakes up at 5 a.m. to enjoy the solitude while the sky is still pitch black. Her husband, Roy, has dementia, and she is his full-time caregiver. “I like to have time for me,” she said. “I go on the lanai and have my coffee and eventually the sun will come up.” Perrow is part of a growing number of American family members who are caregivers. And a growing percentage of them says their health has worsened as a result. Although COVID-19 shut down a lot of area support for now, Village caregivers can find clubs and resources to tap into once things fully reopen. Even now, some organizations are trying to keep in contact with, and provide a respite, for local caregivers.
The changing face of caregiving
In 2015, there were 43.5 million caregivers. By 2020 that number had swelled to 53 million, an 18% spike, according to report from the American Association of Retired Persons. Nearly 48 million of those are caring for someone over the age of 18.
Also up from 2015 is the percentage of Americans who report worsening health conditions as a result of caregiving, from 17% in 2015 to 23% in 2020.
The growth in caregiving is attributed, in part, to the baby boom.
“As the baby boom population continues to move into a phase of life where more of them need some help in order to live independently, family caregivers are stepping in as the first and often best line of care,” said AARP Florida State Director Jeff Johnson.
This upsurge in caregiving combined with the pandemic has the potential to shape the future of caregiving, Johnson said.
“While it is too soon to say what this portends for long-term care, it’s reasonable to assume that families are even more likely to try to find ways to help keep frail parents or spouses at home if they possibly can,” he said.
To avoid the risk of contracting and possibly transmitting the coronavirus to her husband, Perrow has given up cards, yoga and water aerobics for the time being.
Before the virus hit, Perrow would receive caregiver support from New Covenant United Methodist Church and the Day-Break Club of The Villages.
Since it cannot meet in person these days, the church’s efforts, called Joy Room, calls caregivers on Thursday mornings, Perrow said.
And while Day-Break Club of The Villages shut down in-person gatherings in March, Vice President Sandra Ricciardi has been maintaining a schedule of reaching out to the clients so her caregivers can get a break. Ordinarily, the weekly Day-Break gathering provides free supervised locations where caregivers can leave a loved one for activities, fun and social interaction each week, which might include exercise, trivia or dancing to live music.
Ricciardi has been in touch with her “Day-Breakers” on a weekly basis and has started visiting clients, wearing masks and gloves.
“I know how much (the caregivers) need it,” she said. “These caregivers are exhausted and they’re getting no relief.”
This way, caregivers can take a nap or run an errand.
She doesn’t know when Day-Break will resume its original activities, but is watching closely for news about the virus and what activities will be allowed and when.
Virginia Jensen, whose 90-year-old husband, Bob, has Parkinson’s doesn’t much consider the stats or the future of caregiving when caring for her husband.
“I do it for love and don’t regret anything,” Jensen said.
However, caregiving takes its toll. Caregivers can find themselves too taxed to give their best in other areas of their lives, at work, with children or spouses or even themselves, Johnson said.
“At a basic level, more family caregivers means more stressed-out people,” he said.
To give herself a well-needed break, Jensen relies on the kindness of neighbors.
She depends on Villages resources such as Summerhill Caring Neighbors for respite care, so she can take a trip to the grocery store or get a haircut.
Summerhill Caring Neighbors offers help with everything from getting mail to running errands. It has resumed some of its services, including transportation, errands and mail after shutting down because of the pandemic.
“There’s so many people there who are so caring and want to help,” said Jensen, of the Village of Summerhill. “No questions asked. They’ve been a lifesaver for me.”
Taking on the role of caregiver is a 24/7 job, and it takes a toll on the individual, Ricciardi said.
Ricciardi has taken on the challenges of caregiving for two family members and knows the hardship it can present.
Day-Break frees up caregivers to get a haircut, take a nap or shower.
“All of this provided by a group of loving, caring volunteers who give so much of themselves each week to help make their day a little brighter,” said the Village De La Vista resident.
When Day-Break can gather, Perrow, of Village of Sabal Chase, drops off her husband and finds an activity for herself, such as attending a caregiver support meeting at American House Wildwood.
“I got a lot of good ideas from people who have been caregivers longer than I had,” she said, “things that I hadn’t thought of, not only things for making his life easier, but for making my life easier, too.”
Those discussions are bound to develop more as the number of caregivers increases.
It can be a taboo subject, which can lead to isolation, with the false notion that caregivers are the only ones dealing with the challenges, Johnson said.
“As the number of family caregivers grows, it has the potential to move those conversations into the open, which would be hugely reassuring for those who are trying to make it all work right now,” he said.
Discussion is a large part of the sessions provided by Billie Weiss, the founder of Caregiver Reboot. While they’re not meeting at Captiva Recreation Center right now, Caregiver Reboot usually features meditation and guest speakers on holistic topics.
Weiss and her sister were both in caregiver roles when they noticed a trend that people their age were taking on caregiver roles. The class was started two years ago as an aid to them, to head off caregiver burnout.
She currently is in touch with members of the class and has made efforts to continue the sessions off site with small groups, while maintaining the appropriate social distance.
The Village of McClure resident said members of the class are grateful for the “reboot” and she gets many compliments — and hugs.
“I don’t think people realize how taxing it is to give up of themselves,” Weiss said. “That’s why it’s so important to give back to that community.”
Staff writer Julie Butterfield can be reached at 352-753-1119, ext. 5254, or firstname.lastname@example.org.