25 things motorcycle riders have in common with people who live with dementia

I bought a motorcycle in late August 2021. Learning to ride it has been a bit of a rollercoaster, just like learning how to care for my mom who lived with Alzheimer disease was.

When I began caring for Mom, I knew next to nothing about Alzheimer disease or about being with 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 riders and others who may know or care for a friend or family member who lives with dementia.

25 things motorcycle riders have in common with people who live with dementia:

1. Many ‘normal’ people think they are crazy
2. They are not as crazy as many ‘normal’ people think they are
3. They don’t give a rat’s ass what ‘normal’ people think
4. They think ‘normal’ people are the crazy ones
5. They have a lot in common with ‘normal’ people
6. They are often misunderstood and stigmatized
7. They need to be free
8. They like to explore and discover
9. They don’t like to be locked up or put in boxes, cages or prisons
10. If you lock them up, they get anxious and antsy
11. If you put them in a box, cage or prison, they will try to escape
12. They like to be around people they love
13. They may forget where they are going and sometimes get lost
14. They may appear confused and disoriented
15. They tend to perceive risk differently than ‘normal’ people do
16. They like to laugh and have fun
17. They sometimes like to be alone
18. They may or may not enjoy being in groups
19. Each one is unique; they shouldn’t be lumped together as if they were all the same
20. If you take away things they love, they get pissed off
21. They don’t like being messed with
22. If you try to make them do stuff they don’t want to do, they may hit you
23. They don’t have to know you to feel connected to you
24. They want to be loved for who they are
25. 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.

the bell on my bike

don’t put me in a cage

on siding & riding