22 years ago, while living in St. Louis, Mike Caldwell, a resident of the Triangle area in North Carolina, walked into the Alzheimer’s Association’s offices seeking help to navigate his mother’s diagnosis.
“I walked in and this was before computers were a big deal,” Mike says. “We weren’t sharing a lot of resources online like we do now, and I spent about 30 minutes with a gal in there who I still keep in touch with.”
He left the Association with a large packet of information, and a new resource for understanding what his mom was going through.
“I felt like I had a road map in front of me, and Alzheimer’s wasn’t a mystery anymore,” Mike says. “I had a list of resources that I didn’t know existed, and I had a direction of where the disease was going to take us.”
Years earlier, Mike’s mom, who was once “very independent” and hard-working, had begun experiencing mood changes and confusion.
“My mom was what people in St. Louis call a Scrubby Dutch,” Mike says. “She started cleaning floors for Southwestern Bell telephone lines, and when she retired she was a supervisor on the long distance lines. And she did all of that while raising me and my brothers as a single mom. She was a very independent lady.”
But eventually, she became confused about what day it was, and unable to handle her finances. Once her Alzheimer’s progressed, she was confused by her home environment and would call Mike in panic because she didn’t recognize her husband and thought there was a random man in her house.
“The Alzheimer’s Association was instrumental in helping me find a nursing home,” Mike says. “They gave me all of the advice that a caregiver should know before making a decision on an assisted living facility and helped me figure out how to have conversations with her about transitioning into one.”
After his mom passed away, Mike wanted to help other caregivers facing dementia, so he became a volunteer Helpline Specialist with the Alzheimer’s Association. Then, after moving to the Triangle area, Mike became a volunteer Support Group Facilitator, leading monthly meetings for families facing the disease. In 2015, Mike started a support group for male caregivers in Cary, providing them a safe space to share their feelings and emotions.
“My passion was to create a support group for guys,” Mike says. “We thought we were going to get guys that had intimacy questions: ‘How do I bathe her? Change her? etc.’ But what we found was that many of them were feeling guilt and crying because they were sad. They were experiencing the same things that female caregivers experience but they wouldn’t talk about them in a mixed-sex environment.”
Now, the Male Caregiver Support Group has expanded with a second group in Durham, and Mike says the most rewarding part of seeing his passion grow is seeing how many people he is able to help.
“I often tell people, when you’re unhappy with a situation, you have three options: change yourself, change the other person, or change the environment,” Mike says. “Unfortunately, you can’t fix Alzheimer’s, so you can’t change the environment. You can’t change the other person, because they are not really themselves because of this disease. So what does that leave? You have to change yourself.”
He continues: “When I see people have that aha moment, and somebody says to me, ‘I have to learn to live with this and cope with this,’ that’s the most rewarding thing. It’s really seeing people wanting to understand dementia and how this disease really impacts people.”
Join a Support Group
We offer peer-or professionally led groups for caregivers, individuals living with Alzheimer’s and others dealing with the disease. All support groups are facilitated by trained individuals. Many locations offer specialized groups for children, individuals with younger-onset and early-stage Alzheimer’s, adult caregivers and others with specific needs. Due to the COVID-19 pandemic, all support groups scheduled through April will be hosted via phone or video conference instead of in-person. Meetings scheduled for May and June will be assessed at a later date. Find a support group that finds your needs.
Become a Support Group Facilitator
Like Mike, you, too can become a Support Group Facilitator and create a safe, open environment where people share their feelings, thoughts, and experience. For more information on this or other care and support volunteer opportunities, visit our Program Volunteer Community.