“A diagnosis of Alzheimer’s is notably shocking… like an earthquake beneath all that matters. I experienced this over a year ago. It is urgent that you know there is tremendous relief from the stress of immediate fears and assumptions about yourself and the diagnosis. I was encouraged to participate in a group, “Sharing Experiences Together.” Of course, I was guarded and cautious to open up about my concerns. I was filled with the fear of embarrassment, especially when talking to strangers. What if they think I’m crazy, I wondered? I found that there is no relief like the company of others who openly share their deeply guarded fears. Attending my third SET meeting, I could actually laugh at myself among my peers.”
“The socialization in our SET groups is sometimes tearful, but more often filled with laughter. Our discussions about living with the challenges of mild cognitive impairment and how to adapt to our new reality are cathartic.”
Monica Franklin, Chair
“The loss of the intellectual stimulation, socialization and camaraderie I enjoyed in my elder law practice before Alzheimer’s was a huge blow to me, emotionally and physically. I immediately embarked on a living well plan that included regular exercise, following the MIND diet and daily meditation. It wasn’t enough. I needed the support of people like me who were experiencing the challenges associated with living with the disease and trying to convince others that I am still a capable adult. SET has filled that gap for me. It gives me a reason to get out of bed, literally and figuratively, and get on with a positive and productive life.”
“When asked, “what is SET and what does it mean to you?” I have to start with the feeling of finding an old friend from the first day. It has been easy to trust, to share stories, to be accepted non-judgmentally by all. Most every meeting, I say, “I love you” to the group, and I mean it. I appreciate the opportunity to participate in SET.”
Susan Trotter, Secretary
“SET is immeasurably beneficial to John and to me. Through SET, we now enjoy new friends on a similar journey. We appreciate the opportunity that SET provides for sharing feelings and experiences, for receiving and extending encouragement and support, and to laugh and learn in a judge-free zone.”
“My husband, Doug, was diagnosed with Alzheimer’s disease in February 2018 at the age of seventy-four. He was told his best defense against the progression of the disease was to follow the MIND diet, to exercise and to socialize. Diet and exercise were easy prescriptions to implement.
Where do you go when you’ve never been a joiner? I found Alzheimer’s Tennessee’s once-a-month Memory Café, a group for persons in the early stages of dementia and their care partners. We joined. The once a month meeting was not enough! Two Memory Café members, Monica Franklin and David Compton, started weekly breakfast meetings for persons with mild cognitive impairment and/or early stages of dementia. They wanted diagnosed people to be able to share their experiences. SET was formed. Doug was invited to join.
This group is peer driven. Members share their stories, their fears, and their joys. I often hear them laughing as I wait outside the meeting room. They encourage each other to be in charge of their lives. My husband loves every member. The SET members are more than his family. They are his close friends. The doctor’s prescription for socialization is filled with SET.
Because of SET, Doug and I have things to talk about. We talk about his week and what he plans to share at the next meeting. I help him formulate questions he wants to ask the group. A member recommended he get hearing aids, a crucial tool for socialization. Because of SET, Doug is more conscious of how he spends his day, opting for puzzles, reading and on-line courses instead of television news. After becoming a member of SET, Doug’s cognitive test scores improved! He no longer passively accepts his cognitive decline but actively finds way to challenge his brain. Doug is living life to the fullest because of SET.
Why are there so many Alzheimer caregiver support groups and so few support groups for the people who are actually living with the disease? People are getting diagnosed at earlier stages of the disease, yet our support model continues to focus on the end stages of the disease. The SET group is my most important resource as my husband’s care partner because it helps me focus on who Doug is now, not on the future. I need the “now experience” in order to survive what may be in the future. Besides, with all the socializing Doug is doing now, who knows what his future might be.”
“After my mother was diagnosed with vascular dementia and Alzheimer’s disease, she had to retire from her career as a psychologist. We were eager to find activities that would not only occupy her, but also stimulate her need to be among intellectual peers. A long time friend introduced her to SET. She began attending the weekly meetings in 2018 and has barely missed one since. It has become a core part of her life and has provided her and us a sense of belonging and community. Monica, David and SuAnne create a safe and vital space for those who are diagnosed with cognitive impairment for “Sharing Experiences Together.” There’s no better way to say it!”
“My sister regularly reminds me of what a wonderful experience it is to be part of the SET group in Oak Ridge. I heartily concur! The encouragement, energy, and sometimes deeply moving experiences that are shared are immeasurable gifts. The conversations Monica and David began almost two years ago are now bearing fruit for which both of us are very grateful.”