I wrote “16 Things I Would Want If I Got Dementia” back in 2014. I later added four more items to make it 20 Things I Would Want If I Got Dementia. Please note: the one available here on my site is the only one that you should ever repost, and it must be reposted as an image.
The idea for the list came to me while I was driving my car, and I pulled over and jotted down a quick note in my phone.
If I had known what it would later become, I never would’ve put it on the Internet as a simple text-based poem: I would’ve turned it into a PDF or JPEG image immediately.
About every 6-12 months, someone rediscovers my poems from the depths of Facebook and reposts it to their feed. It will read something like, “Copy and paste this if you have a loved one with dementia!” It never has my name. Sometimes, it’s attributed to “author unknown.” This is particularly frustrating. I want to scream, “The author is known! She’s right here!”
Often, someone will add something to the copy/paste poem that is incorrect. As an example, they may tell people to introduce themselves and their relationship to a person living with dementia. “No!” I want to cry. “Please don’t do that in that way!”
But I can’t. By then, the poem has thousands of likes and hundreds of comments. Typically, some type of “influencer” will spot it, repost it carelessly, and from there it’s off to the races with incorrect information and without my name. This happens about every six months.
You may be thinking, “So what? At least your great information is out there to help people.”
If you’re feeling this way, I can almost guarantee you’ve never created something that was then taken from you, altered slightly, and tagged as “creator unknown.”
There’s a weird, heart-racing feeling I get every time a friend sends me a screenshot of the poem they spotted on their feed.
“Hey Rachael, I just saw your poem again!” Ugh.
We’ve started sending intellectual property lawyers after these copyright violations, mostly because it’s too painful for my team and I to try and do it ourselves.
75% of the time, people are very nice and will take it down or repost with the image without a battle.
The other 25% of the time, the person will launch into a personal attack.
“WOW! I thought you wanted to help caregivers but you must be a terrible person because you won’t let me keep this poem on my website!”
I don’t know why asking for them to add my name and website, or simply adding the downloadable image, makes me a bad person…but apparently, it does.
Now, we try our best to take ourselves out of the equation: we send to the lawyers, I close my eyes as I hit the “pay” button on their invoices.
1 thought on “16 Things I Would Want If I Got Dementia”
Hi, Rachel!
It’s great to have a clear term for why someone with dementia doesn’t remember you. Timeline confusion does make sense in those situations and your advice of not forcing your loved one into your timeline seems like an empathetic ways to handle it. It was also helpful that you pointed out that if a grandparent with dementia now believes that they are in their 20’s, it wouldn’t make logical sense for them to have am adult grandchild.