“I just want to learn how I can do things better,” said a soft-spoken woman seated at a table with half a dozen others, everyone listening intently. The woman was attending the monthly Dementia Caregivers Support Group at Zion’s Lutheran Church in Trinidad, where people who care for a dementia patient, usually a loved one, can talk about their own experience as well as provide support for others going through the same thing. For privacy’s sake, other than the group facilitators, the names and personal details of people attending the meeting have been omitted in this article.
The group, started a year ago, is led by Jill Wilson and Suzanne Davis, who take on the endeavor independently of their full time jobs in healthcare. “A lot of it is just having a safe place to get together with other people who are going through the same struggles, as every caregiver does, especially caregivers of somebody who’s got some form of dementia,” said Wilson. “Alzheimer’s just happens to be the most common form and depending upon the overall health of the person it can last anywhere from two to 20 years.”
Once everyone was seated, Wilson jumped right in asking one woman how things are going. She responded that her husband was misplacing things around the house in very strange places, and that she was struggling with how to get him to stop driving. Someone else threw out the idea of having a key made that doesn’t start the car, so then the patient can blame the car for the problem and not direct anger at his wife. Coping mechanisms are a big take home from the meeting and techniques include not arguing with a dementia patient, perhaps using a distraction such as offering candy to avoid an argument
Another lesson for caretakers is to pick one’s battles. “That’s really important to learn early on,” said Wilson, whose father had Alzheimer’s. “I remember my mother calling me in tears one night ‘your dad won’t get into his pajamas’ and I said ‘well what is he in?’ She said ‘he’s in his sweats.’ I said ‘Mom, that really isn’t all that important because the more agitated you get him, something else is going to go wrong, far worse than him sleeping in his sweats versus his pajamas. Please Mom, pick your battle here.’”
The frustrations and difficulties of life as a caretaker also took center stage at the meeting. “I used to like to stay home, now I gotta get out, I don’t want to stay home,” said a woman caring for her husband. Several people also expressed sadness about watching a loved one once so capable lose the ability to take care of financial affairs. Wilson likened the process of dementia to a tree slowly losing its leaves.
Practical information is also doled out along with advice and camaraderie. “We try and do as much as we can for people needing resources for finances,” said Suzanne Davis, whose day job is working as a discharge planner at Mt. San Rafael Hospital. “It’s pretty tough, I guess my biggest part is that if they qualify for Medicaid, get them on Medicaid.’’ Other practical matters include helping people understand more about a healthcare power of attorney and guardianships.
Both Davis and Wilson, who works at Health Solutions Wellness Center in Trinidad, have trained at the Alzheimer’s Association. They wanted to share the information they have with others and that’s why they’re involved with the group. “People are just so grateful, it’s just information that you happen to have because of the work that you do and to be able to share that with others is really a blessing if you can make their life and what they’re going through any easier because it is not easy in any way, shape or form,” said Wilson.
Despite the challenging subject matter, laughter also echoed through the church meeting room during the hour long gathering as people let go, relating their shared experiences. And what stood above all as the attendees spoke, at least for one observer, was the astounding dedication of love.
The Dementia Caregivers Support Group meets the first Tuesday of every month at Zion’s Lutheran Church, 613 Prospect St., Trinidad. For more information call 719- 568-5982.