At our last Without Warning meeting, Bob, whose wife passed away from younger-onset Alzheimer’s disease several years ago, told me something interesting. He realized that during the 10 years he has been attending Without Warning meetings, he has learned how to share his story. While sharing your story might seem like a small task, I’ve grown to realize that it is a profound and healing skill.
Without Warning, a 13-year-old support program of the Rush Alzheimer’s Disease Center, is for families living with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s means the person is diagnosed by the age of 65 or younger. This is a young age to be experiencing Alzheimer’s disease. Group members might still be working, raising children, driving and have friends who aren’t experiencing such a life-changing disease. Alzheimer’s at any age can make someone feel isolated and different, but these feelings only intensify when someone is young.
‘Agony of an untold story’
The author and poet, Maya Angelo once said, “There is no greater agony than bearing an untold story inside you.” As a group facilitator, I have seen the agony of an untold story in both the person with Alzheimer’s and their family members, and there are numerous reasons their stories are not heard or told.
“When we typically think about Alzheimer’s we think about people who are in their 70s and 80s,” says Susan Frick, a social worker with the Rush Alzheimer’s Disease Center, “but there is this group of people who are under the age of 65.”
“The mission of Without Warning is to give a voice to people with younger-onset Alzheimer’s disease,” says Anna Treinkman, an advanced practice nurse with the Rush Alzheimer’s Disease Center. “We at Rush started this with the impetus from people who are younger, who didn’t feel that they had any connection when they would go to support groups that were stricly for Alzheimer’s disease — a lot of older people — and they had nothing in common with them.”
Participants take immense comfort in the monthly gatherings.
“I really look forward to coming on Thursday,” says one Without Warning participant, whose husband has Alzheimer’s disease. “I just think it’s really healthy to come to terms with the disease. I learn more about it, I learn more about myself. I just don’t feel like I’m alone, which is how I feel most of the time.”
Every month for many years, I have had the wonderful opportunity to listen to an amazing group of people. Their knowledge and insights have taught me about living while facing some of life’s most difficult challenges.
Sponsored by the Rush Alzheimer’s Disease Center, this monthly group is for people living with younger onset Alzheimer’s disease (diagnosed under the age of 65). Our group, called Without Warning, is for both the person experiencing memory problems and the family members or friends who are also on this journey. We meet to talk about how to live gracefully with Alzheimer’s. We talk about the difficulties, but also the triumphs. I’m one of the several staff people who help coordinate this growing and vital program.
As you can imagine, having Alzheimer’s disease at such a young age is often unexpected and can be an overwhelming experience. These individuals describe Alzheimer’s as feeling like they have fallen into a pit and can’t find the way out. They talk about feeling disconnected from people who are right around them. They talk about a tired feeling they have never felt before. And, they talk about realizing that they are not the same spouse, parent, child or friend. Continue reading →