After a few months absence, I’m back in Belleville, Michigan. Or as I like to call it: The B. In case you missed my first post about The B, it’s a small town about 30 miles west of Detroit. So I guess that makes it The D’s country cousin.
Since last summer, I’ve been coming back here every two months or so to assist my granddad with my grandmother’s care and to help him out around the house. My grandmother was recently given an official diagnosis of dementia, devastating news since we’d been hoping her memory loss was the result of some new medications she’d been prescribed for other health issues and most of all, that it would be reversible. Instead, her decreased brain function is permanent. And it’s much worse now than it was when I was here in October.
My relationship with my grandmother has always been as close as that of a mother and daughter, but these days she doesn't always recognize me. Even more painful: I don't always recognize her. I have accepted the fact that the woman I’ve called Grandmother for 40 years is disappearing before my eyes. Taking her place, like something out of Invasion of the Body Snatchers, is a woman who looks like her, sounds like her, but is at times so unlike her, she may as well be a stranger. It is the M.O. of this cruel disease — one minute the affected is as lucid as they ever were, the next they devolve into a state of confusion, anger, or despair, crippling not only to themselves, but also to those who love them.
But she’s still in there, my grandmother. I can see the frustration on her face when she tries to recall even the most recent of memories, the angst when she fails to grasp them. Sometimes she supplants real memories with invented ones: “We were at LeBron’s the other day,” she recently told me, meaning LeBron James, her favorite basketball player. She has never met him. She also has frequent conversations with invisible people. “Are you Mr. James’ boys?” I heard her ask an empty room the other night. “Come here, tell me your names. Come here,” she said.
Sometimes she calls me by her late sister’s name or by my mother’s name. She also calls me by my aunt’s name, the eldest of her two daughters. This is especially distressing since my Aunt Dee Dee died unexpectedly late last year. I believe my grandmother’s dementia was a sort of filter through which she processed my aunt’s death. She still grieves this loss, but she seems distant from it, as though it is one of those filaments of memory she can’t quite retrieve. I always answer to these names, but gently remind her that I am Joi. “You are the one who named me, Grandmother. You named me after you,” I say.
The other day she became increasingly agitated in the early evening, just one symptom of the common condition known in the dementia community as Sundowning. As my granddad guided her from the living room into their bedroom, she began to rail at him for telling her what to do. Her ire towards his attempts to care for her, the razor-sharp words she sometimes hurls at him are difficult to witness. I have to remind myself of what I’m sure my granddad has already told himself countless times: were she in her right mind, she would not speak to him this way.
“I have an invite,” she said on this occasion. “And you can’t make me stay here! You can’t tell me what to do, Sonny! Sonny is my granddad’s nickname, a moniker my grandmother once used only in affection, never in fury.
“Where are you going, honey?” my granddad asked, his tone a study in patience.
“I’m going. I’m going to...to...to my INVITE!”
I don’t have to tell you there was no invite.
Eventually my granddad coaxed her into bed, her imagined invite forgotten. Theirs is a constant tug and pull. Him trying to convince her to take her medication, her resisting. Him pleading with her to eat, her refusing. But he always prevails. Sure, he gets flustered at times and his patience sometimes runs thin. But through all of it, I’ve never once seen him yell at my grandmother when she’s uncooperative. I’ve never seen him treat her with anything but tenderness.
Frankly, I don’t know how he does it. How he cares for her day after day, all by himself, while battling physical health challenges of his own. Among other issues, he suffers from gout, chronic back pain, and needs both knees replaced. The latter is a surgery he won’t even consider because he doesn’t want to be away from my grandmother. I am here for my granddad as much as for her. To give him a break so that he can leave the house, if only to putter around town running errands or to cruise around the supermarket on a motorized cart (he really likes doing that). He also enjoys watching his shows uninterrupted, especially westerns, cooking programs, and Family Guy (which he refers to as Stewie).
When I was a child, my introverted granddad was never loquacious. We mostly got a few mumbled words when he got off work from the Chrysler factory, and perhaps a sentence or two on the weekends. The only times he broke this quiet streak was to verbally spar with my grandmother, a playful and loving back-and-forth they still enjoy on her good days. Since my grandmother’s health decline, my granddad has also gone through a metamorphosis. Perhaps it’s because he has taken over the complete running of the household from my her and now has more responsibilities than he’s ever had in their marriage. These days, he’s not only talking in complete sentences, he’s downright garrulous.
He is also hilarious. I like to think his inner Fred Sanford has always been in there — it just needed a reason to come out. Several times a day, he has a new bon mot to entertain my grandmother and me. For examples of some of his droller moments, see my most recent Saturday Short.
While researching dementia I came across this quote attributed to the actress Carey Mulligan:
“Those with dementia are still people and they still have stories and they still have character and they are individuals and they are all unique. And they just need to be interacted with on a human level.”
The last line has stuck with me. Is there anything more distinctly human than laughter? There’s a reason people say it’s the best medicine. My grandmother has always liked to laugh and at least for now dementia hasn’t changed that. At times, when she is in the thick of a confused or troubled state, getting her to laugh will bring her back around. I think of Mulligan’s quote daily and I remind myself to interact with my grandmother on that human level, laughter being key. And no one can summon a chuckle out of her quite like my granddad. Dementia has brought much sadness to this household, but thanks to Sonny, there is also still some Joy.
