You can only know so much about Africa without visiting. You can read books on Africa. You can look at pictures of Africa. You can spend time with people from Africa…but I don’t think you can really gain a full understanding of Africa without visiting.
That’s where I’m at with Dementialand. I know a lot about dementia. I’m grateful that I am sometimes given opportunities to use this knowledge to educate communities, professional caregivers, family caregivers, and college students about dementia. Sometimes, however, I am put in my place. I’ve never been to Dementialand, and every once in a while someone reminds me of this.
I was talking with a woman with dementia a few months ago when she got hung up on a word. I waited patiently while she tried to pluck it out of the air. She never found the word, and her gaze settled on me.
“You look at me all smiley when I get frustrated with myself,” she said angrily. “You don’t know what this is like. Stop acting like you get it.”
I don’t know what it’s like to have dementia.
If you have dementia, please realize I understand that my education and experience can only take me so far. I don’t understand how you feel. I try to understand, but I can’t fully get there–because I don’t have dementia. Please also realize that I’m trying my best with the skills and knowledge that I have. I’m gonna screw up. I’m gonna say the wrong thing. I’m gonna frustrate you because I don’t know how to help you. (And, to be honest, you’re probably gonna frustrate me, too. That’s what dementia does.)
But I promise that I won’t stop listening and learning. Toward that end, I make an effort to read books, poems, and blogs written by people with dementia.
I’ve mentioned Melanie Wagner in my blog before. She has early-onset Alzheimer’s and continues to write about her experiences at https://mwagner21.wordpress.com/. She’s amazing to share her journey, and yet I don’t think she has any idea that she is remarkable. Her blog will teach you more about Alzheimer’s than my blog ever could.
I spend hours reading, talking, teaching, and thinking about dementia. I spent the last four nights at a hotel where I was annoyed by the carpet design because it would not be appropriate for someone with dementia. It’s impossible for me to go to a basketball game or a bar without thinking about how overwhelming the environment would be for someone who was affected by Alzheimer’s. Despite my passion and knowledge, I could never write anything as insightful as Melanie’s work. She understands dementia in a way that I don’t, and–if I’m being honest–I hope I never do.
Today I am sharing one of her poems.
Hear the words
Listen to the quiet undertones
The crumbs, the soft whispers
The off the cuff remarks
Please don’t judge, accuse, negative or condescending
Each word, the context, the emotion
They mean something
Follow the crumbs
Pick them up
Don’t wait to get to the end
When it’s too late
Don’t be the one who says, thinks, or wonders – the what ifs, I should have seen, known or done something, helped!
Hear my voice, my pain, my heartache
Follow my path, catch me, hold me, help me
Read between the lines
Look for the signs, the cliff
Along the trail are clues
Reactions, implosions, doubt
Loss of self worth, meaning, purpose
No one knows how many crumbs will fall
When they run out
When they stop
Learn and understand
Empathy not sympathy
The bricks have all ready fallen
The crumbs are being placed
Time does end
Light does fade
Tomorrow is never promised
~ Written by Melanie Wagner ~
Original source: https://mwagner21.wordpress.com/2016/01/21/bread-crumbs/