By Andrea Davis
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In the Village of Lake Deaton, Kerry Hughes, left, and Cort Cheney take apart a bed as member of the Pickleballers Helping Seniors. |
Caregivers sacrifice more than they let on.
Taking care of a loved one is a 24-hour-a-day job. Breaks are difficult or impossible to come by.
But caregivers living in The Villages can find support in neighbors, friends, support groups and nonprofits.
The 2020 update for AARP Family Caregiving reveals that the number of family caregivers in the U.S. increased by 9.5 million from 2015 to 2020, reaching 53 million. More than 1 in 5 Americans are family caregivers.
AARP Florida State Director Jeff Johnson believes that number will continue to grow as more of the population moves into a phase of life where help is needed to live independently.
"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.
About 30% to 35% of the population of The Villages serve as caregivers, according to Dr. Jeffrey Lowenkron, Chief Medical Officer for The Villages Health.
"The term 'caregivers' is a broad term, and many individuals find themselves providing some type of caregiving to others, such as a parent, friend, neighbor, volunteering for assisting the elderly and/or disabled, or charity work," Lowenkron said in a statement. "In addition, many spouses living in The Villages provide caregiving to their loved one within their home."
Since the pandemic started, even more family members have taken on caregiving roles. Without them, their loved ones would have to leave their homes and move into assisted living facilities, said Sarah Jane Glynn, a sociologist with the National Academy of Social Insurance, a nonprofit in Washington, D.C.
"Having a family caregiver keeps them in a familiar place with a routine that they are used to, causing less stress for the patient," she said.
Among caregivers in the U.S., 55% said they would not have identified as caregivers before the pandemic because they were able to access resources making them feel less lonely, according to a study called "The Impact of Caregiving on Mental and Physical Health” conducted last year by Blue Cross Blue Shield.
The commitment of time, labor and emotional support this role requires can have a substantial impact on caregivers' physical, behavioral and emotional well-being, study authors said.
The Villages has more than 150 support groups, and some of them provide opportunities for caregivers to enjoy an activity with their loved one or drop off their loved one for a few hours so they can take a break to run some errands, get a haircut or just get some much-needed rest.
A support group can even become a "second home" for the patients and the caregivers, said Sandra Ricciardi, of the Day-Break Club of The Villages.
"They look forward to coming here," said Ricciardi, of the Village De La Vista. "For those couple of hours a week, they are able to go do something for themselves and then return back to the role of caring for their loved one."
Ricciardi founded the Day-Break Club in 2013 because she saw a need for it.
"When I moved to The Villages, there was nothing like this club," she said. "I created it as a safe place where caregivers could leave their loved ones while they took a break. It's easy to get burned out and the pandemic didn't help."
Many of the caregivers and their loved ones who are part of the club consider the other members like additional family, she said.
When the club put meetings on hold because of COVID-19 safety guidelines, Ricciardi continued to visit members on a one-on-one basis, giving her time to allow caregivers to socialize and complete errands.
"I wanted to make sure caregivers were getting a chance to step away if needed," she said. "It's very easy to burn out if one doesn't occasionally take a break."
The group held a spaghetti luncheon in October 2020 to give club members a chance to socialize in a safe and distanced environment. About 35 guests were served in shifts.
"It was a great opportunity to allow the members a moment to catch up with friends, while still taking their safety as a priority," Ricciardi said. "They were so glad to be there that many eyes sparkled with tears as they came back to their second home."
The club has not resumed weekly meetings but Ricciardi hopes to get them going again soon.
The Multiple Sclerosis Village People group in The Villages also provides support for patients and their caregivers, with a mission of "breaking down barriers so members can live life to the fullest." MS is a disease in which the immune system eats away at the protective covering of nerves.
Caregivers help loved ones continue to do the things they could do before they were diagnosed with the disease or before it progressed to the point of needing assistance. Sometimes it can be as simple as helping put on shoes. Other tasks are more difficult, such as getting someone out of bed, helping them wash their hair or helping them make and eat breakfast.
Gail Gibson, of the Village of St. Charles, is a member of MSVP and takes care of his wife, Betty, as her MS progresses.
"She is still mobile," Gibson said. "And she fights every day to try new things."
Gibson spends some of his mornings at the archery ranges throughout The Villages, and while Betty doesn't want him to stop doing what he loves, she also is looking for a way to join him.
"MS is a downhill type of disease," Gibson said. "Betty is strong, so it hasn't quite affected her to the point she can't walk. Her biggest battle right now is balance, but she is determined to take on the challenge."
Gibson said MSVP was founded in 2003 and has around 180 members. He said the support of the group makes a huge difference in his life, because he can turn to the members if he needs a hand or has questions.
"We are like a family," he said. "We are always looking out for one another and lending a hand when we can. It's a very encouraging and supportive group."
While their meetings just resumed, they spent the last few months getting together on the second Tuesday of each month at Fiesta Bowl to bowl and have lunch together.
"We just bowl a single game," said member Andrea Springer, of the Village of Amelia. "It's a way for us to get out and socialize with people dealing with the same issues while being safe. We have some who are in wheelchairs and we use a ramp to help them bowl, but we all work together to make sure we can laugh and have some fun."
The group Caring Neighbors lends a hand to caregivers and others who may not yet need a caregiver but have a hard time doing some activities by themselves. The group provides rides to medical appointments, grocery shopping and any other type of errand.
Founder Anne Bosler, of the Village of Hadley, has recruited volunteers for the past four years, with the mission of starting up several Caring Neighbors programs throughout The Villages. Hadley Caring Neighbors was the first, followed by Summerhill Caring Neighbors.
"Ideally, six or more neighbors are needed to start the program in a village,” Bosler said. "Hadley Caring Neighbors began with six members in 2016 and now has over 50 members.”
Once the program has the required number of volunteers, it will partner with United Way of Lake and Sumter Counties, Bosler said.
United Way provides background checks on volunteers and supplies materials such as brochures, name badges, a dedicated phone and documentation guidelines.
"In addition, several volunteers from existing Caring Neighbors groups are ready and willing to contribute in any way to help a new volunteer group get up and running,” Bosler said.
The group continues to expand and now has five chapters throughout the Central Villages region.
"As more people move to The Villages, we are seeing more people needing help," Bosler said. "As The Villages continues to expand, we hope to expand with it. Some Villages residents have a hard time giving up their independence and our group helps out in any way we can."
In the Village of Gilchrist, two residents who started a program in 2018 are continuing to lend a hand to their neighbors. They call their group 214 Assist and they help with many different tasks.
"I think the program is a good thing and important to those in our neighborhood,” said Bob Heit, co-leader of the program. "We help people with tasks they think aren't important, like getting a ride somewhere."
When COVID-19 happened, the neighbors found ways to work around the virus while staying safe.
"We would hold virtual meetings once a month just to check in," said Joyce Doblosky, leader of the program. "We wanted to make sure everyone was OK and if they needed something, one of us would be able to assist. My husband, Jack, and I started doing online groceries just to keep us safe from the crowds and it made it easy to order something for a neighbor when they needed something."
The group has more than 22 ambassadors keeping an eye on the 140-or-so homes in the village, including watching their houses when they are out of town.
"We still check the email and help any way we can, but we keep all communications digital,” Jack said. "One of these days we will go back to 'normal,' but right now, it's about keeping us all safe. We do miss spending time with our neighbors though."
When Joyce broke her ankle in 2020, an ambassador from the group got her mail for her.
"When one has an injury, even a little task feels like it takes forever," she said. "Having someone around who was able to help me, even by getting my mail or helping me with groceries, it made a huge difference and is one of the reasons I am glad we have this group."
They also drive other residents to appointments and errands so they do not have to seek outside help.
"We have all come together to help one another in some way, shape or form," Heit said. "Without the communication and being able to rely on each other, we would all be in trouble and our happy spirits would diminish."
Pickleballers Helping Seniors formed in 2020 during the pandemic to help residents who cannot do things on their own or just want someone to talk to.
"We make grocery store and pharmacy trips, provide technology assistance, assist with the mail or just hang out and have conversations together," said Doug McClintock, of the Village of Pennecamp.
McClintock is one of the seven board members who started the group.
"We just got together in our golf cars while keeping our distance so we could remain safe," he said. "We started talking about the situation our community was in and how people in need might need a hand and we just set out to help."
The group has more than 100 volunteers helping out and volunteers don't have to play pickleball to be in the group.
To learn more about the group and how to get involved, visit pickleballersservingseniors.com.
As the group takes on additional volunteers, they are looking for more ways to help out their neighbors.
"We are always open for new volunteers, especially as we are expanding our services into the nursing homes and helping with light yard work," he said.
Recently the group helped Keren Pekkanen, of the Village of Lake Deaton, who takes care of her husband who has dementia. Members of the group took apart a bed, moved it to another room and put it back together.
"The bed is really heavy and bulky," she said. "I wouldn't have been able to get it apart and put away the way I needed to without their help. I have worked with this group before and I cannot say enough praises about them."
Pekkanen has been filling in as a caretaker for some of her other loved ones as well, and when she is unable to do a task, she calls the group for their help.
"Sometimes, I am unable to leave the person I am helping and it means I have to find someone who can assist me while I continue my care," she said.
Pekkanen has called on the group a couple of times since its formation and said she would recommend them to anyone in need.
"They are always so polite and willing to help," she said. "Even if it's a small task like hanging something on a wall or helping in the yard, they are quick to assist without complaint. It gives me the opportunity to focus on caring for others and it gives me peace."
Linda Tucker was in the process of starting a new nonprofit called Dementia Pals last year before the pandemic started. The group would pair caregivers or volunteers with someone needing assistance in groceries, company, errands or day-to-day activities.
"It was going really well," said Tucker, of the Village of Fernandina. "But then COVID happened and we had to delay. Then we ended up in Massachusetts longer than planned because of my husband's health."
Tucker plans to continue setting up the nonprofit when she returns.
"There is such a need for it," she said. "So many caregivers need an extra hand so they can go out and do whatever it is they need to do. It's hard caring for someone who may be in a condition where you can't leave them, but at the same time, you don't want to make it feel like they are a burden because they aren't."
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