Resources available for caregivers who need respite from care of loved ones

By Lorraine

Burt and Barbara Wilson of Windham
have been married for 62 years. One year
ago, Burt was officially diagnosed with
Lewy body dementia and now his wife
Barbara provides 24-hour care. There are
Many resources available that can help
unpaid family caretakers, giving them a
respite in the Sebago Lakes Region.
SUBMITTED PHOTO 

Glowczak

When Barbara Wilson and her husband, Burton “Burt,” moved from Massachusetts to Raymond in 2006, they not only returned to the state where Barbara’s mother’s family was raised and lived, but she and Burt held a deeply ingrained dream to settle and build their retirement home along the tree-lined hills of Tarklin Hill Road.

“Every time we visited family in Maine, we envisioned the home we would build in Raymond,” Barbara said. “Burt had a specific idea as to how the house would look and it turned out to be exactly as we both wanted. It was such a beautiful place and we enjoyed living there so much.”

But 11 years later in 2017, that all changed. Burt had his first stroke, which affected his body physically, making the upkeep and care of their property too much for one person. They sold their dream home in Raymond and moved to a smaller house in Windham in 2018, one that is more conducive to Burt’s needs and one Barbara can manage on her own.

Unfortunately, Burt’s health has declined. In June 2020, Burt was officially diagnosed with Lewy body dementia (LBD) and had a second stroke two months later.

Lewy body dementia (LBD) is a disease associated with abnormal deposits of a protein called Lewy bodies. The disease affects chemicals in the brain that lead to problems with thinking, movement, behavior, and mood. LBD is one of the most common causes of dementia. There are no known causes for this disease, and at the present time there is no known cure.

Burt, now wheelchair bound needs 24-hour care which Barbara lovingly gives. But who does the shopping and runs other necessary errands?

“I have hired a home-care specialist who comes in twice a week for a few hours in the afternoons,” Barbara said. “She helps me clean the house, changes the sheets, gives Burt a shower and helps him with his physical exercises. While she is here, I quickly get away to do errands, go shopping, etc.”

Although it is with certainty that Barbara appreciates the few hours of help that she and Burt hire so Barbara can run a few errands, this leaves no time for self-care or respite for herself. Barbara is ‘on’ 24 hours a day with no day off. As a family caregiver, Barbara is not able to take time for her own mental, physical, and emotional well-being. Burt and Barbara’s two sons who live in other states are not readily available to assist with the needs of their parents, although they visit as often as possible.

“I need more help, but because we are retired and living on a limited income, I am unable to hire our home care specialist for longer hours or hire another person to assist us,” Barbara said.

Burt and his wife are not alone in meeting the challenges faced by older adults. In fact, the Alzheimer’s Association reported in 2019 that more than 16 million family members and friends provided 18.6 billion hours of unpaid care to people with Alzheimer’s and other dementias, at an economic value of $244 billion. Many of these caregivers overlook their own needs and thus become overly exhausted to continue the care their love one requires.

Despite the adversity in caregiving, there is good news. There are several resources and opportunities available for those who provide home care for their loved ones.

For those who live in Cumberland or York county, the Southern Maine Agency On Aging (SMAA) provides relief for older adults and their caregivers. SMAA not only offers resources but provides information, support services and workshop opportunities to empower older adults, adults with disabilities and their caregivers “to live their fullest potential”. One important resource that fits the needs of Barbara and Burt is the SMAA’s Caregiver Respite Program.

SMAA’s website describes the Caregiver Respite Program as: “support[ing] family caregivers by reimbursing some of the costs of having someone else provide care for the person with dementia. This program enables caregivers the opportunity to take time for themselves, to do what they enjoy or need to do.

Lori Campbell, SMAA’s Family Caregiver Support Specialist said that this program is made possible through a grant received from the State of Maine’s Office of Aging and Disability Services.

“There are certain criteria we must follow to meet the conditions of the grant, including an official diagnosis of dementia,” Campbell said. “But we are here to help the caregiver in many ways - including filling out all the required forms to identify if the caregiver is eligible for services, but we assist also as much as we can to anyone who is playing a role as caregiver for a person with dementia. At this time, there is no waiting list for this program.”

If eligibility requirements are met, the family caregiver can submit up to $3,800 in respite expenses per fiscal year for an 80 percent reimbursement, can help with the cost of in-home care, adult day care, and/or up to two weeks of overnight care in a facility per fiscal year, and allows a caregiver to apply for a waiver for all or part of the 20 percent co-payment depending on income and assets.

Campbell said that SMAA offers community support groups, workshops for caregivers as well as wellness and nutrition for older adults and caregivers. SMAA provides social and interactive opportunities that older adult caregivers lack and need, offering workshops on various subjects that include Caregiver Stress Management, Understanding Cognitive Loss and much more. In addition to the SMAA workshops and support groups, members of the SMAA caregiving team will take the time to talk more in depth with older adults and caregivers in other ways to see to it that their needs are addressed.

“I, along with my colleague, Robyn Berry, are available to guide individuals by phone [1-800-427-7411] or email [lcampbell@smaaa.org],” Campbell said. “We also meet individuals in person via Zoom – or face to face once our office opens up to the public.”

Although we all envision living a life of health and happiness, elderhood takes surprising curves. Eventually, ready for it or not, support and information regarding the aging process is needed – whether it is cognitively, emotionally, physically…or all three.

“Burt and I have been married for 62 years,” Barbara said. “It’s been a wonderful life. I just never imagined that we’d be where we are today. Dementia is something you never picture for yourself when you are young and in love and building a family and a future together.”

There are many resources for older adults in the Raymond and Windham communities. For more information, resources, and support, below is a brief list of many organizations who provide help and resources for those who live in the Sebago Lakes Region area:

Southern Maine Area on Aging (SMAA): www.smaaa.org/resources/caregiver.html or 800-427-7411

Raymond Age-Friendly Community: www.agefriendlyraymond.org

Windham Age-Friendly Community: https://agefriendlywindham.org or 207-892-4649.

Saint Joseph’s College of Maine, Institute for Integrative Aging (Serving the Sebago Lakes Region area older adult population): https://www.sjcme.edu/centers/institute-for-integrative-aging/ or 207-892-6766.

Windham Neighbors Helping Neighbors: https://windhamneighbors.com/site/ or 207-749-1336. Sebago Lakes Region Fuller Center for Housing (serving Raymond, Windham and Standish who choose to age in place and need home repairs): https://www.sebagofullerhousing.org or 207-387-0855. <