Mike Belleville says living with dementia is like learning a new dance every day. His wife Cheryl agrees; she often has no idea which Mike she is coming home to. They tackle each day – and new dance – with flexibility, tenacity and a little grace.
Mike was diagnosed with dementia in 2013 at the age of 52. The diagnosis rocked his world. He retired early, downsized his family home, and spent several months in a deep depression.
“I quit doing all the things I loved,” says Mike. “Until Cheryl said, ‘enough is enough.’ She Googled for answers and our journey started from there.”
A Google search led them to the Alzheimer’s Association, which led to a “new career” in advocacy.
For January’s Optimum Life Continuing Education series, I sat down with Mike and Cheryl for an open and emotional conversation about what life is really like after a dementia diagnosis. Dementia: The Lived Experience is offered to nurses, nursing home administrators, case managers and social workers for continuing education credit.
Mike and Cheryl are candid about their experience. Mike describes what it feels like to have dementia and Cheryl explains the struggles she faces in day-to-day life. They also discuss how their doctor handled Mike’s diagnosis and what they wish he could have done better.
Here’s a sample of my conversation with Mike and Cheryl:
Juliet: Can you share how your family reacted to the diagnosis?
Cheryl: We had a conversation and said: where do we go from here? Who do we tell? We didn’t know where to start. Telling our adult children, it was really hard for them. Their children are young. How long would they see their grandfather? We were all left in awe. It just felt like he was too young, only older people experience this. So, the diagnosis was really hard for us, especially at the beginning.
Juliet: What does living well mean to you today?
Mike: Living well, for me, is just trying to reinvent myself every day. What I mean by that is I try not to sweat the small stuff anymore, let the drama go away. I keep challenging myself every day. People think that when you have dementia you can’t learn new things. I’m now the cook, I’ve been doing that since I retired. Because of the Dementia Action Alliance, I have two podcasts. I’ve taught myself how to photo edit. I’ve learned that I love to paint. So, I am trying to live a meaningful, purposeful life every day. And to try and feel like I’ve accomplished at least one good thing every day.
Juliet: What do you want professional care partners to know about dementia?
Mike: I want caregivers to remember that dementia is a disease, not a personality trait. Respect me for the person that I am. Look at the whole person and use your creativity to find ways to help me.
In addition to this candid conversation, this webinar will:
- Explore the evidence related to care and support challenges faced by people living with dementia and their caregivers.
- Define what quality of care and support is through the eyes of someone living with dementia.
- Offer tools for supporting independence and identity for people living with dementia.