Journey with Dementia Minds – an Unforgettable Hour
“I may forget years of technical training, but I’ll remember this hour for the rest of my life.”
That quote from a physician who participated with me in a ‘Journey with Dementia Minds’ session in Lansing earlier this month summed up my sentiments exactly. It was the most powerful professional development session I’ve ever attended.
The session featured six men living with dementia. With extraordinary candor, the men shared their experience from what it was like to receive the diagnosis to their current daily life struggles and triumphs. An unmistakable thread of hope and living with purpose ran throughout the conversation. Here are just a few of their insights:
- “Life ain’t over. I am still productive. I focus on what I can do well. I can’t do everything well… but, get this… people with dementia can learn!”
- “Stop telling us to go home and ‘get our affairs; in order’. It’s wrong… tell doctors to stop saying that. We have a lot of life to live, even after getting the diagnosis.”
- “One of the most unenlightened things people say to me is ‘you don’t look like you have Alzheimer’s?’ Well… what should I look like? I just want people to look at me as a person, not someone with a disease.”
They talked about how long it took each of them to talk to their doctor. Each of them said they waited too long.
- “I knew things weren’t right, but I didn’t want to admit it.”
- “Get the big checkup. You need to get ahead of this disease. There’s no cure, but there’s life. When you know what you’re dealing with you can deal with almost anything. I have been living with dementia for ten years. I don’t know how much longer I’ll live, but I’m living every moment I can.”
The participants shared the sad reality of the significant percentage of people with dementia who choose to take their own lives. One participant said, “this group, these men, saved my life.”
They talked about living with hope:
- “Come to peace with what you have. I won’t live long. But while I’m here, I can love my family. You can fight or deny this, or you can grab every moment and live it for all you’re worth.”
- “I am grateful for where I’m at. Don’t get me wrong. I wouldn’t wish this on anyone, but I’m okay. It’s a good life I have.”
The session ran long, but no one left their seats. The audience was captivated. It was riveting and ended too soon.
Journey with Dementia minds is a part of the National Council of Dementia Minds (NCDM). “We embrace the diversity of persons affected by the multiple types of dementia and promote our strategies to enhance well-being and refute the misconceptions about living with dementia” says Brenda Roberts, NCMD co-founder and president.
The Area Agency on Aging spearheads a local effort to combat the fear and stigma associated with dementia through its Dementia Friendly Communities strategy. Core to that effort is Journey with Dementia Minds groups and an Arts and Aging Partnership presenting live theatrical performances.
The local Journey with Dementia Minds group will present their own “Journey of living with Dementia” on April 28th at the Campus for Creative Aging and at 11:45 AM on the Entertainment Stage at the Senior Expo on May 12th at The Mendel Center.
Memory of a Dance, an original play based in-part on the experiences of local individual who are living with dementia, runs this weekend at the Campus for Creative Aging at 2:00 PM Saturday, April 22nd and Sunday, April 23rd. The Campus is located at 2920 Lakeview Ave., in St. Joseph. The final performance is April 29 at 2:00 PM at the Hanson Theater at Lake Michigan College, 1100 Yore Ave., Benton Harbor. Tickets are $15 for adults and $12 for students. Tickets can be purchased online at campusforcreativeaging.org/classes. Free tickets are available to those who cannot afford the ticket cost. Leave a message at 269982-7748 to reserve a free ticket. Your ticket will be waiting for you at the door. Memory of a Dance is funded in part by a grant from the Berrien Community Foundation. Ticket sales support the Dementia Friendly Communities movement.
Join us for a powerful journey at one of these events. Like the physician who joined me at the Lansing session, you too will likely never forget this hour.