Everybody has a story.
When you walk around this world and tell people you teach about dementia and started a dementia simulation house, everybody has a story.
And it’s my job to listen.
It’s a parent living with dementia who wandered away from home for two days before being found in a park. A nursing home that treated a loved one poorly. A neighbor who thought you were stealing his tools. A suspicion about your mom or your dad. Or yourself.
Many times there are questions. Why did he behave like that? Can you use the nursing home? How can I convince the neighbor I’m not stealing his tools? Do you think I should be concerned about my loved one? Or myself?
Keep in mind…these are conversations I have in passing. At graduation parties. At wedding receptions. At the indoor cycling studio where I coach.
You could say I should do better at keeping home/work boundaries and avoid these conversations. Or maybe have these individuals call me during work hours.
That’s not really how I’ve structured by life. It’s a choice. I jump into the conversation leaving my poor husband wondering if we’ll ever make it out of Target. (Bill, I appreciate the way you patiently wait for me to finish a dementia lecture in the cereal aisle.)
But here’s the thing….what am I interested in? I’d better say dementia, or I’ve take a wrong turn somewhere in life. These stories are interesting. And I learn.
There was a guy who said, “My wife has that dementia. It’s from all the time she spent breastfeeding. It messed with her brain.”
I learn I need to do a better job helping the public understand what may cause dementia, and what does not.
And the woman who told me, “My dad has both dementia and Alzheimer’s. Can you believe our bad luck?”
I learn I need to do a better job teaching the difference between Alzheimer’s and dementia. Alzheimer’s is one type of dementia. Everyone with Alzheimer’s has dementia.
In the middle of a wedding reception, a woman approached me and said, “I heard you’re the dementia lady. I want to know where I am supposed to turn after my husband got diagnosed. No one can help us.”
I learn we still have a long way to go in providing support services and making families aware they are available.
Once a gentleman asked me if dementia was contagious. The jaws of people lingering around dropped. I responded that it was not. And I realized that there are people who have not have an opportunity to learn about dementia.
In order to teach communities about dementia, I need to get a feel for what people know and don’t know. I’ll be honest. When I have conversations about dementia, I talk too much. And I don’t listen enough.
So I’ll start at the gym. At the wedding reception. At winery in northeast Iowa. At a martini bar. (Ask my friend Amy…sometimes I wonder why she wants to go out with me anymore. Sorry, Amy, for all the times you had to sip your drink and listen to me give a TedTalk to the bartender.)
Before you think I am trying to throw myself out there and suggest I’m a hero, stop. I know a lot about one particular topic and I want to share that info to help when I can. But, really, I am incredibly fortunate.
I have a few favorite topics….indoor cycling, pets, and dementia. All of them are part of my daily life. And y’all know I could talk about dementia all day, and so I do. Except when I am telling you about my two dogs and three cats.
My life is pretty cool.