20 Nov WHEN THERE ARE NO WORDS. LITERALLY.
“Thank you,” my mother said to me a few weeks ago as I pulled my face away from hers, having just given her kisses, one on each cheek. I didn’t know I’d be blinking back tears, but there they were. Happens to me a lot now. I’m fine, I’m fine, and…tears. So that’s not important. The significance of the moment was the “thank you.” My mother was not a “thank you” kind of person before she had Alzheimer’s. Not that she never said it to me, but since leaving New York City after my father died 22 years ago, “thank you” wasn’t exactly on the tip of her tongue. She was very angry with me.
My mother doesn’t speak much at all now, a word now and then, which is what made the “thank you,” connected to an action, so striking. She wasn’t saying thank you to the chandelier in the lobby of the home where she lives, she was fully present to having been kissed and was expressing gratitude for affection. Which is one of the reasons why I thought to bring comedians to people with Alzheimer’s. Because anyone not intimately familiar with the disease could spend a short time with my mother, particularly on a day where she is tired, or simply just not interested in making the effort to dial in to her surroundings and think, “Well, she’s gone.” I am not being glib. I have heard people say these words, usually ending a sentence that starts with, “What’s the point of visiting? I mean, she’s gone.” Allow me to report from the front lines, the person is not “gone.” And I haven’t met one yet who wouldn’t love to have you kiss their cheek. Okay maybe my father-in-law, but he’s a former Colonel in the Army and has never been a big fan of affection. I make him hug me anyway, because surly old men, though they huff and puff, they love a good hug too.
To be very clear, people with Alzheimer’s disease are not gone.
Though they often can’t express it, the appreciate you looking in their eyes, holding their hand, saying “I see you,” sending through word and deed the message, you are not alone. Because once the disease kicks in the majority of a person’s waking hours are spent in fear and isolation. It may feel to us go-getters like, what’s the point?, what am I really achieving by being there?, it’s not like they’ll remember me, or remember that I was even there. This is where visiting a person with Alzheimer’s disease becomes a spiritual lesson, like one of those soothing yet intentional messages your yoga teacher says to your class just before doing your sun salutations. About how being present is all, and to let go of whatever is telling you you’re not enough, to breathe and just be here now. Visiting a person in the later stages of dementia, you get all of that wisdom without having to twist your body into a pretzel. Sitting with a person with Alzheimer’s disease is the ultimate lesson in being. They do not give a sh#t what you have done that day, that month, or even with your entire life. (Twenty years in Hollywood and I finally found a group of people who don’t care if I’m famous!)
I actually have this fantasy – yes, this is what it’s come to folks – that any of us, when we start to feel the panic/depression of not being or doing enough welling up, that we could get in our cars, type “senior residence” into WAZE or Google Maps or the latest navigational aide and then just drive to one of them. You park your car, get out and walk into the dining room of any memory care “wing,” or “floor,” or if you are lucky enough a place entirely dedicated to memory care where the crazy flag runs free. You see a person sitting alone and pull up a chair next to them, look the person in the eye and ask them how they are doing. If they stare at you blankly, you make a funny face. Or make a very serious face and then follow it with a silly face. Or sing, even if you can’t carry a tune. Or just hold their hand, thinking for a second you are doing nothing, but understanding somewhere that what you are doing means everything.
And maybe, you’ll even get a “thank you.”