Finding Joy While Losing Her
“It’s ok, Joy. Just go with Kelsey and the kids to find seats, and then we’ll meet you in the theater,” says my stepmom as I gently wrap my arm around the small of Joy’s back and try to guide her away from the concessions line. Joy’s face holds the wide-eyed, half-smile expression we’ve all come to learn over the past two years as meaning she doesn’t quite understand what’s being asked of her in that moment. It’s not a furrowed brow, and she doesn’t protest in anger. She simply stays put and looks back and forth between our faces as if we are all underwater trying to shout out the steps to a complicated lasagna recipe through columns of bubbles and floating hair. Eventually she understands, or perhaps she just gives up and acquiesces to our request because something in the depths of her deteriorating mind knows that we are people she can trust. Maybe it’s neither one of those. I lead her down the hall to our theater as my kids run up ahead of us.
My 4 year old daughter can find the theater on her own without any problem, but our 73 year old Joy cannot.
I hold Joy’s hand as we walk through the lobby. Though she is not feeble and can physically get around perfectly well on her own, sometimes I feel like I am holding onto a helium balloon that could float away for good at any moment. And I want to hold on tight.
I make simple, one-way small talk with Joy that consists of me narrating out loud the basics of getting from point A to point B: “Ok, I think we’re looking for Theater 25…there’s 23, 24, ahh yes, here we are, right through these doors..ok, up these stairs here to our left and then right in this row here…yep, these seats right here.” I can’t help but feel like I’m being ridiculously condescending. This woman has visited all seven continents, and climbed ruins, and camped in the bush, and hiked more miles than I will ever walk in my lifetime. But here we are, guiding her small frame through movie theater aisles, making sure she stays right next to us.
Joy is my stepmom’s lifelong friend, and she has been like an aunt to me since I was little, and a great aunt to my own children for their entire lives. We may not have any shared DNA, but she is family without question. She has spent every holiday, birthday, get-together and random outing with us as far back as I can remember. She has been the one in charge of the mashed potatoes at Thanksgiving, and the one who makes baked apple french toast on Christmas morning. She’s the one who always shouts out the answers to Trivial Pursuit questions whether it’s for her team or the other team, too excited about knowing to care about winning.
But the most important part — the absolutely essential part — of Joy has always been her fierce independence. Joy never married or had kids. Instead, she crafted a life of service to humanity and nurtured her love of adventure. She dedicated herself to a decades-long career at the American Red Cross, and once or twice a year would use her vacation time to travel the world. And I mean really travel the ENTIRE globe all on her own. Every time I would see her she would have pictures and tales to share from her last trip, plus details and dates for her next planned excursion. She craved the newness of places and people, and thrived on discovery.
But Joy probably doesn’t remember any of that anymore. In 2014 she was diagnosed with Alzheimer’s, and the disease has progressed quickly over the past year. She now lives with full-time care and is unable to find the right words to express herself with even the simplest of sentences. She cannot drive, or even go for a walk by herself. Sometimes she has to be shown what to do with a drink that’s just been poured for her.
Afflictions of the human body and mind do not discriminate; disease knows nothing of fairness or irony.
Joy is my first experience with Alzheimer’s, and it is a strange disease to say the very least. Even writing about her now feels odd because it sounds as if I’m writing someone’s obituary before they have even died. But Alzheimer’s seems to be a disease of paradoxes. Joy is with us, and yet she is not.
It’s often said that Alzheimer’s is a unique struggle in that it seems harder for the loved ones to cope with than it does for the person with the actual diagnosis. Somebody you love profoundly is right there, standing with you in the grocery line or sitting across from you at breakfast, and yet that same person might not be able to answer you if you turned to them and said, “What is my name?” What tethers us to our closest friends and family is a shared history together. So what are we to make of it when the person stays put but their memories slip away? I imagine it as if you are holding onto one end of a rope, and the other end is held by your loved one. That rope is the relationship between you two, and woven into it is every single inside joke and embarrassing moment and argument you’ve ever had with that person. But when Alzheimer’s takes over the other person’s brain they can’t hold onto the rope anymore; it slips from their grasp and drops to the floor. And yet the person remains standing right there in front of you as you hold a rope that dangles.
As Joy and I and the kids all settle into our seats inside the theater, my stepmom and dad return from the concessions line and dole out popcorn and drinks for everyone. The movie we are seeing is the Disney Pixar sequel Finding Dory. I know the Finding Nemo story, but I have no idea what the sequel will entail. A short time into the film it becomes abundantly clear that the movie’s overarching theme is ALL ABOUT memory, and more specifically about forgetting. I have a sinking feeling in my stomach, and I start to wonder if this movie wasn’t the best choice to watch with Joy. What if it stirs something upsetting inside of her? What if it makes her angry? What if she cries? We’re all out at this animated movie because my kids wanted to see it, and I will feel horrible if this movie ends up bothering her in any way. I lean forward in my seat and look down the aisle trying to gauge her expression. And then I see it — that profile I’ve known for all these years, with her spiky, silvery pixie haircut and her glowing perfect skin. And she’s smiling. She’s beaming up at the screen in between sips of her oversized soda and the occasional chuckle. I feel relieved and then a little bit silly. In that moment Joy is feeling joy. And why wouldn’t she be? The sadness over the concept of forgetting who you are or where you came from is upsetting to the ones who are still holding onto their end of the rope.
There was a time, in the early stages of her diagnosis, when Joy was fully cognizant of what was going to happen to her brain over time. I make no romanticizations of this disease. There is anger and frustration and utter fear. There are long and difficult stretches that tax the person and all those who love them. And I cannot claim to know what Joy is experiencing inside her thoughts as the disease takes over completely. We do not know what lingers or what may come in momentary flashes, or what is merely foggy and what is gone for good. What we do know is that she is here, still hugging us and still smiling.
Now when I get together with Joy there are no pictures of Machu Picchu to sift through or tales from the summits of the Alps. Instead, she’ll just grab my hand leading me over to a big bowl of chocolate-covered blueberries, and while rolling her eyes to indicate sheer decadence and delight she’ll point to the bowl and make the effort to put together two perfect words: “So. Good.”
And that right there is pure Joy.
This article is dedicated to my stepmom, Maggie, who when her best friend dropped the other end of the rope Maggie simply picked it back up, tied it around her friend’s wrist and said, “Let’s keep going.”
