“What’s happening to me?” Ellen asks timidly. Her voice is soft and childlike, trembling with dread.
She is buckled into the passenger seat of a blue SUV, staring out the window, wildlife surrounding her. She is in a nature preserve outside the city where its residents come to enjoy the bounties of relatively untouched earth. She can see walkers and runners on the park paths, one is a young mother running with a stroller. Ellen thinks about when she was a young mother and how quickly that time passed. Suddenly, she has three adult children in their twenties, thirties, and forties, spanning twelve years and three decades.
She continues staring out the window as her question hangs in the air unanswered. She knows something is off but she can’t identify what it is. She has a strange feeling of deja vu but can’t place it. The answer seems foggy and far away in her brain and she keeps reaching for it but it only moves further away, like some sort of game.
She looks to her husband, Mike, sitting in the driver’s seat next to her. He is looking out the driver’s side window, facing away from her. She senses that he won’t or can’t look at her but she knows he holds the key to her question.
Parked on the side of the road in a little alcove, overlooking a large pond and overhanging willows. It’s springtime so the branches are still quite bare but the buds and leaves are starting to visibly bloom. It was a snowy, cold winter so it’s a relief to see green emerging all around.
The air is still chilly which is why they are choosing to stay in the car. Ellen seems to be shrinking these days and can’t hold body heat like she used to. Even though she is inside the vehicle with the heat blasting, she continues to wear her winter coat to protect her tiny, frail frame from the cold. Mike sits next to her coatless, overheated, and on the verge of perspiring.
He finally looks over at her but avoids eye contact, taking a deep breath in, audibly exhaling out.
“Are you sure?” he asks. She can see his eyes are glassy and a little red like he’s been crying. Or maybe he’s about to cry. It’s hard to tell.
“Please tell me,” she begs, trying to make eye contact but he continues to avert her gaze. “Are you mad at me?”
She senses it’s the wrong question but it’s all she can think to ask.
His eyes finally meet hers and he opens his mouth to speak but shuts it quickly. He does this several times, the words stuck inside his throat until he is finally able to force the words out.
“You have dementia.”
He doesn’t say anything else right away, the words creating a fog, blurring his vision. But it’s not a hazy mist, they’re tears filling his lids, threatening to spill over but he can’t let them. If they fall they may never stop.
“Dementia?” She questions, thinking she may have misheard him, needing to confirm.
He slowly nods, liquid escaping his eyes, leaving streaks down his cheeks. One drop has managed to traverse the bridge of his nose, creeping to the tip and hanging lifeless on the edge, awaiting the inevitable plummet.
She is stunned by these words, unable to comfort him, unaware that he is on the precipice of bottomless sadness. Distracted by her thoughts, she remains still and silent, flipping the words around in her mind, wanting to make sense of this news.
Her mind mistrusts the information, convincing herself not to believe him.
He is wrong. I do not have Dementia. There is no way. Her internal monologue morphs into a chant, an involuntary self-talk urging her to question this information. He is wrong.
He hates this part. The part where he has to watch her grapple with the news again. To her, this is the first time but to him, this is their cycle. He waits patiently as she works through his incomprehensible words.
“I don’t understand,” she finally responds, hoping he has it wrong.
“I’m sorry, honey. It’s true. We’ve been to multiple doctors over the last several years and they all came to the same conclusion…” he trails off.
“How do they know?” Challenging the “facts” being presented. She needs proof. She needs answers. She cannot accept it.
Expecting this response, he explains, “They ran a bunch of tests, evaluations, brain scans, all concluding the same result.” He hesitates momentarily before continuing, “And I see it too.”
“What do you mean?” Ellen snaps back. This catches her off guard the most, feeling betrayal shoot to the surface. Why has he been lying to me?
Mike flashes to several days earlier when he came home from work with the oven on and the door wide open, spewing heat into their kitchen. He found Ellen pacing in the other room, admitting she did not know how to turn it off.
He remembers two weeks ago when she had gone for a walk and didn’t return home for an extended period. Worry and fear catapulted him to search for her, eventually finding her wandering two streets over, lost and disoriented.
Then a month prior, while at work, their neighbor called him to let him know their garage and front entry doors were wide open, and Ellen was nowhere to be seen. He ran home to check on her, and discovered her in the living room, staring blankly at a dark TV screen. She claimed she had just sat down to take a break, not acknowledging the gaping doors or clear confusion she was dealing with.
That’s just the surface, not to mention the daily increase of words she forgets and the time spent grasping for language just out of reach. These are all foundations of the disease, building a new normal for them, mostly for Mike though. He’s become the keeper of information and of their memories, simultaneously carrying the caretaker load, continuously taking on more as her brain offboards cognitive abilities. He often wonders when his boat will have taken on too much water, eventually sinking him. He can’t think about that now though.
He doesn’t tell her any of these things, knowing it will only make it worse. He’s learned it’s easier to keep it simple and leave space for her processing and questions.
Rather than responding, he reaches a comforting hand to her knee, then her shoulder, but she does not move and he senses the information is sinking in.
As the silence grows, Ellen feels something deep inside telling her he might be right. She can’t put her finger on it but she knows. She does not say anything in return and stares blankly out the window.
Weeks later, Mike and Ellen sit on their back deck, the weather finally starting to break, offering the sun and warmth that they enthusiastically receive. They enjoy the intimate silence of a couple that has been together for four decades, not feeling as though they must fill the silence. It’s these moments they cherish, finding themselves hanging on to seconds rather than minutes, hours, or days. Time is smaller now, quicker. They know to be grateful for the tiniest slivers of joy. That’s all they‘re allotted now.
And just like that, the tide turns and their sliver has disappeared.
“What’s happening to me?” Ellen asks quietly, breaking the silence. Her voice is like that of a young child, scared and unsure.
Mike braces himself, preparing to shatter her world once again. This time, he doesn’t question whether she’s sure she wants to hear it or not and instead, tenderly delivers her diagnosis.
“I’m sorry, honey. You have dementia. I’m so sorry.”
Dementia is a devastating disease, not only impacting the person living with dementia but also for their family and friends experiencing the loss of a living loved one. I wrote this piece in honor of my parents, Ellen, and Mike, hoping to raise awareness and show a glimpse of the everyday struggles of dementia for the person suffering and their caretakers.
September is World Alzheimer’s Month, aiming to raise awareness and destigmatize dementia. Learn more about Alzheimer’s and dementia at Alzheimer’s Disease International.
This is such a poignant account how Alzheimers first comes between a husband and wife—bringing them together and then taking them apart.