We dance round in a ring and suppose
But the Secret sits in the middle and knows.
~ Robert Frost, "The Secret Sits"
Throughout Mom's dementia journey, I've wrassled my thoughts and feelings into dementia perspectives that often differ with the majority. I've finally decided to write 'em out so I can understand my own mind better, and find others who are also thinking dementia-different.
The secrecy began even before diagnosis; everybody noticed something was a little off with Mom but nobody talked to her about it, just to each other, and to me. I understand why - when I brought up my concerns with Mom or Dad they blanched like I'd just announced I had taken up cannibalism and would they mind if we had barbecued baby tonight?
But knowing that the only strategy for cognitive decline was drugs that could delay that decline, I urged Mom to see her doctor. She agreed if I went with her, but, at her request, we kept the appointment a secret, even from Dad. After the appointment, Mom and I told him together. What followed was a couple months of discussions about what this meant for our family before the curtain came down and our new word of the year, "Dementia", was whisked off stage.
Maybe she confided in her closest pals about her dementia future? How she felt about it, her hopes and fears. Maybe girlfriends/sisters were privy to conversations she felt she couldn't share with daughters? I know I never saw or heard Mom tell anyone that she had dementia. Dad, being an overly private man at the least opportune times, also kept his mouth shut, so then it became kind of like a guessing game; I didn't want to "out" Mom before she was ready, but I also didn't know who knew and who didn't. Conversations became a tad combative at times.
Family reunion: cousin I haven't seen in awhile:
"So, how's your mom?"
Me:
"Why? What do you mean? Why are you asking? What have you heard? WHO'S BEEN TALKING?
Cousin backs away slowly
Me:
"That's right! Keep walking, McNosey. Wait, come back! Which way to the beer coolers?"
Eventually, everyone connected to Mom knew, but dementia was still not discussed openly. Well-meaning friends and relatives would approach me, not Mom, to ask how she was doing. I once responded rather curtly, "You know, she knows she has dementia, why don't you ask her?"
I found this secrecy baffling. It was as if we were all embarrassed for her, like she'd farted but nobody wanted to acknowledge it, instead we just metaphorically wrinkled up our brains and pretended we couldn't smell the dementia.
And it wasn't just us treating it like it was a dirty little secret. Did you know there's business-card size handouts you can order to give out behind a dementia person's back to further avoid saying the word out loud?
There's no equivalent cards for cancer, heart disease, diabetes - apparently people are allowed to say those words, have those diseases. I think I'll make up a bunch for menopause and start handing them out behind girlfriend's backs as we all get older.
And the stress of hiding the disease took a toll on Mom; she kept that up for the first three years. It was painful to watch her attempt to be her former self in social settings, but probably not as painful as it was for her to try. Once she finally let go of the shame and stopped trying to hide the fact that she flat-out couldn't remember much of anything there was a marked improvement in her disposition. And her symptoms decreased, albeit temporarily.
It is not my place to scold people with cognitive decline on their personal choice to share their diagnosis or not. It is also not my aim to admonish those who love them, but don't know how, or are afraid, to broach the subject. Nor to chide any care givers who utilize tools such as the dementia cards above. It's dementia. We are all doing the best we can with what we have to work with. But...
...I want to see a change. A future where people who have cognitive decline, and those who care about them and for them, don't hide, aren't embarrassed, and don't live their lives with this big secret that, eventually, is A SECRET TO NO ONE.