So when I came across the article “Toxic Positivity – What Are You Not Allowed to Say About Dementia?” by Professor June Andrews, I almost laughed out loud. Not because it was funny, but because it felt like she had been reading my mind. Finally, someone else saying out loud what I’ve been thinking (and biting my tongue about) for years. Let’s face it, I was never going to be the poster woman for Alzheimer’s societies that try to sell you the facade of “living well with dementia.”

When Alzheimer’s bulldozed into my life, I had no clue what informal sandwich generation caregiving even meant. Twenty-four years later, it became my life’s work. I literally wrote my dissertation on it. And yet, here we are, still selling families this pipe dream that you can “live well” with a disease that can only be studied post-mortem. The irony is painful.

Yes, I did the things. Flashcards. Exercise. Supplements. Doctor’s appointments like they were a full-time job. But in the end? Alzheimer’s: 100. Caron: 0. My mom wasn’t “living well.” In her early stages, when she still had enough awareness, she cried for hours and asked, “Who has Alzheimer’s?” because even she knew what was coming.

Nobody talks about the incontinence, the confusion, the aggression, the depression, the grief. Nobody talks about the logistical circus of planning an appointment like it’s a military operation—3–5 business days of preparation and a silent prayer that nothing explodes. It was so unreal that I started journaling, which turned into publishing Alzheimer’s: What They Forget to Tell You back in 2014. After 14 years of living with the disease, I put it all out there. People said I sounded angry. My response? Then give me a Pulitzer, because if surviving Alzheimer’s caregiving without rage was the standard, nobody would qualify.

I sat on committees where people flinched when I said my mom was suffering from Alzheimer’s. Now, in our “woke” culture, even that phrase is apparently off-limits. Because God forbid we disrupt the PR machine that insists you can “live well” with dementia. My mom was 57 when she was diagnosed. I was 30 with a newborn. There was nothing about it that looked like living well. Alzheimer’s is rude, abrasive, and disrespectful. It doesn’t knock politely. It moves in, wrecks the place, and dares you to keep smiling for the cameras.

And yet—I’d still do it again. I’d still have cared for my mom. I just wish someone had told me the truth. That yes, there will be good days. But there will also be endless sad ones. That you will grieve every single day, and then start all over again after they’re gone. That PTSD will come knocking too (fun bonus round), and you’ll need counseling to climb back out.

So no, it’s not “a long goodbye.” It’s just long. It’s brutal, messy, and unromantic. And if that honesty makes me sound angry, so be it. Because sugarcoating Alzheimer’s does nobody any favors. We need more truth-tellers like June Andrews. We need to stop romanticizing dementia.

Here’s to saying what so many of us lived: dementia doesn’t come wrapped in rainbows. And the sooner we quit pretending it does, the better.

References

Professor June Andrews March 2019 Toxic Positivity – what are you not allowed to say about dementia? https://juneandrews-net.cdn.ampproject.org/c/s/juneandrews.net/dementia-and-older-people-blog/16/3/2019/toxic-positivity-what-are-you-not-allowed-to-say-about-dementia?format=amp