By Sarah Wibell
With more than five million Americans diagnosed with Alzheimer’s, a memory-impairing and personality-altering disease that is a subcategory of dementia, there are exponentially more people caring for them. The Alzheimer’s Association asserts that every 66 seconds someone in the United States develops the disease, increasing the number of people with a form of dementia and those offering care.
For the first time in Morgan County, a monthly support group specifically for caregivers of people with Alzheimer’s and dementia, is being hosted by the First United Methodist Church (FUMC) in Madison. Caregivers can gain specific information about caring for people with various dementia diseases, share experiences, talk through struggles or challenges to try to find solutions, and engage with others who understand.
The Alzheimer’s Association of Metropolitan Atlanta’s statistics estimate that Georgia had 519,000 caregivers who offered 591 million hours of unpaid care in 2016. Morgan County alone was purported to have 305 residents with a type of dementia in 2015 based on data from the Division of Aging Services of the Department of Human Services.
It is common for caregivers to wear themselves thin while trying to maintain the dignity of the people they are caring for, to become withdrawn and to feel alienated. That’s why there are various books on the topic such as Nancy L. Mace and Peter V. Rabins’ The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss.
It is also why support groups and other resources are so beneficial. But support groups like this don’t materialize on their own. They take an instigator, coordination, and sometimes a bit of serendipity or, if you so believe, a touch of divine intervention.
FUMC Director of Adult Spiritual Growth Margaret Ligon stated, “We have several parishioners who we know are dealing with family members or loved ones with some form of dementia disease. What we started out with was just an Alzheimer’s and dementia caregivers’ workshop back in January to give them some basic tools, because Cindy Snyder came to us and said, ‘There’s a need for this.’”
Snyder, FUMC parishioner and one of the support group organizers, wanted to help others gain resources as a result of her own experience.
“I was inspired while providing care for a neighbor who is affected by Alzheimer’s,” she said. “There is a need in our community to help caregivers successfully deal with aging parents and spouses with Alzheimer’s and dementia. My church and I wanted to be a part of something that would help others by offering support through education.”
During the initial workshop, a representative from the Alzheimer’s Association of Metropolitan Atlanta and an elder law attorney were brought in as speakers. “We had 40 people turn up – we had expected maybe 15 – from all over the county and a couple from out-of-county,” Ligon recalled.
The support group as it exists now was conceptualized as a result of responses from a survey taken during the workshop. The questionnaire revealed that the caregivers really wanted additional, regular support.
Enter Mary Jo Gibbons. Having recently relocated to Madison, Gibbons, a senior living and memory care specialist, heard about the support group through an FUMC bulletin and is now the group’s facilitator.
“My dad had younger-onset Alzheimer’s, and I was the one caring for him,” Gibbons shared. Her focus for more than 30 years has been to treat people with the disease like she wanted her father to be treated and to teach caregivers how to manage the difficulties of such a task. Gibbons continued, “I just knew that I had the gift, skill, and ability to offer something that the support group needs. I feel that it was just natural and that the timing of it was divine intervention. That was very exciting to me.
“I can so relate to the caregivers, and they can relate to me because I was a family member. For me, my ability to share the stories and to relate to their stories just offers a deeper kind of connection because I get it – I completely get it.”
Meeting the fourth Monday of each month at 5 p.m. in the Epworth Building, Room 202, the first meeting of the year was Feb. 26. Eight people attended, most of whom had never been to a support group previously. Many of those participating said that the most beneficial information given to them was that other people are dealing with this demanding and exhausting challenge; they aren’t the only ones.
As a facilitator, Gibbons encourages healthy sharing and guides caregivers to resources to increase caregiver support and education.
Topics discussed in the group may vary in range: tips on managing stress, how to deal with challenging situations as it relates to behavior or communication, personal centeredness, and even how to help someone up after a fall if they’ve forgotten how to get up on their own.
“I really want to take facilitation to a different level where my focus is much more about the person than the disease, more about their experience, and more about how you connect soul to soul,” Gibbons said.
“I can’t begin to express enough how what I want to do is really change the perspective people have about this horrible disease and realize that maybe we don’t present it with such a fear factor and talk about it as being ‘victims of’ and how horrible it is and ‘oh, it’s like a death sentence’, but really look at the beauty within it. When I say that, I mean that from the standpoint that oftentimes in life with adversities like a disease like this, there can be beauty within that.
“I talked a lot in the meeting about ‘the windows’, as far as ‘the windows of opportunity,’ for really just embracing the moment. Whether that be a look, a wink, a laugh, or whatever it is, we’ve got to be able to treasure the good and not always look at the negative. My goal is to really get people to learn how to cope with it in a more positive way.”
FUMC’s support group for caregivers of people with Alzheimer’s and dementia encourages anyone in need of support and resources to come to their next meeting on March 26.
While this support group is not affiliated with the Alzheimer’s Association, the national organization is an important resource and offers a 24/7 hotline: 1-800-272-3900.