What is it like to live with dementia? I have no idea.
I have a string of analogies I use to explain to families and caregivers what it’s like to live in Dementialand, but the truth is that I don’t know what it’s like.
I know someone who works in adult day services. She works with a woman who has younger-onset Alzheimer’s. I’ll call her Tina.
Tina is prone to what can be best described as meltdowns. In fact, that’s what Tina calls them. Her meltdowns are due to the smallest of things. Someone sat on the end of the couch–where she was planning to sit. The pants she wanted to wear were in the wash. Her nail polish chipped. And, one time, someone used the term “tippy toes,” which she found childish and annoying.
She cries. She gets angry. She can’t calm down or stop shaking. After the meltdown dissipates, she says to my friend, “I’m sorry about my meltdown, but you have no idea what it’s like to have this disease.”
And it’s true. Sometimes when I am doing my best at trying to help someone with dementia and failing miserably, they will remind me that I don’t get it. Sometimes they don’t even have to remind me. Sometimes people will cry and I can’t figure out exactly what’s wrong. I don’t know what they’re going through. I visit Dementialand, but I don’t live there.
As a person without dementia, I don’t get it. And as many people as I talk to and as many research articles as I read, I won’t ever really get it–unless I’m diagnosed, of course. I’ve been through the Virtual Dementia Tour and several other simulations meant to make a person feel like they have dementia. It’s a valuable experience and one I recommend, but I know I’m just visiting.
So here’s the point of my blog today…THANK YOU to those of you who have dementia who try to show me and tell me what it’s like, even though we both know I will never really get it.
They try to show me and tell me in different ways. People with dementia have blogs. They write books and poetry. They allow themselves to be videotaped. They try to verbalize, even though it is hard, what it’s like to live in Dementialand. They allow me to spend time with them, just so I can understand a little bit better.
But the truth remains. I visit Dementialand but I don’t live there.