I bought a motorcycle in late August 2021. I’m learning to ride it. It’s a bit of a rollercoaster, just like learning how to take care of my mom who lived with Alzheimer disease was.
When I first began, I knew next to nothing about Alzheimer disease or about caring for someone who lived with it. I learned a lot over the next five years. Then, in 2011, I left my home in Dubai and came back to Canada to live full time with Mom.
From that point until her death in 2016, I learned more than I ever thought I would about dementia and dementia care and how broken our long-term care system is. I also discovered that the way we treat people living with dementia is completely misguided and mostly just downright wrong.
We need to change the way we see, understand and engage people who live with dementia. The list below, which includes links to useful resources on MyAlzheimersStory.com, is for members of the motorcycle riding community who may know or care for a friend or family member who lives with dementia.
25 things motorcycle riders and people living with dementia have in common:
- Many ‘normal’ people think they are crazy
- They are not as crazy as many ‘normal’ people think they are
- They don’t give a rat’s ass what ‘normal’ people think
- They think ‘normal’ people are the crazy ones
- They have a lot in common with ‘normal’ people
- They are often misunderstood and stigmatized
- They need to be free
- They like to explore and discover
- They don’t like to be locked up or put in boxes, cages or prisons
- If you lock them up, they get anxious and antsy
- If you put them in a box, cage or prison, they will try to escape
- They like to be around people they love
- They may forget where they are going and sometimes get lost
- They may appear confused and disoriented
- They tend to perceive risk differently than ‘normal’ people do
- They like to laugh and have fun
- They sometimes like to be alone
- They may or may not enjoy being in groups
- Each one is unique; they shouldn’t be lumped together as if they were all the same
- If you take away things they love, they get pissed off
- They don’t like being messed with
- If you try to make them do stuff they don’t want to do, they may hit you
- They don’t have to know you to feel connected to you
- They want to be loved for who they are
- They are mothers, fathers, sons, daughters, brothers, sisters and friends
I hope this list helps you and others reframe the way you will see and approach people who live with dementia in the future. They are just like you and me: the same and different. Like motorcycle riders who don’t want to be put in cages, people who live with dementia don’t want to be isolated, stigmatized and misunderstood. They want to be free to live their lives fully with the love and support they deserve.
© 2021 Susan Macaulay. I invite you to share my poetry and posts widely, but please do not reprint, reblog or copy and paste them in their entirety without my permission. Thank you.