What It’s Like to Love Someone with Dementia

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It begins again. The unending cycle — a relentless punch to the gut, a jolt to the heart, a confusing loop that seems to have no end.

Stage One: Denial

“Have you spoken to Mom?” That dreaded question from one of my four siblings cuts through me like a knife.

“Yeah,” I respond, squeezing my eyes shut. “Why?”

“She just seems… off.” My brother’s sigh hangs in the air.

“No, I haven’t noticed,” I lie.

After we hang up, I bury the conversation deep in my mind and try to go about my day. I play with my kids, help them with homework, and whip up a lackluster dinner that we all eat together. I nod along as my son excitedly chats about his latest Lego Star Wars creation and wipe my daughter’s mouth while she hums a tune from preschool. We sit around the table, and I act as if everything is perfectly fine, even though I know it’s not.

It can’t be happening again.

And yet, it does, until she reaches that next stage… everyone’s favorite.

Stage Two: “I’m Back!”

My phone buzzes. “Mom” flashes on the screen. I hesitate, longing to hit the red Decline button, but I can’t. I yearn to hear her voice, to grasp onto any semblance of normalcy, so I answer.

“Hi, Mom,” I say, holding my breath.

“You’re coming to see me for Spring Break, right?” she asks, her words tumbling out faster than usual.

“Um, I haven’t thought about…”

“I’m cleaning out my closet!” she interrupts. “Do you want that brown suit we bought at Dillard’s? You could use it for work.” Her thoughts flit around like a butterfly, and I struggle to keep up.

“No, Mom. I don’t work anymore,” I remind her, even though it’s been seven years.

“Oh.” She pauses, momentarily bewildered, but quickly shifts gears. “I’m so alive right now! I’ve never felt better. Did I tell you? I’m back! I have so much energy. I stayed up until 6:00 this morning, organizing everything!”

I picture her chaotic attempts to tidy up, how her clothes are strewn across the bed and the kitchen counters are piled high with mismatched dishes. My father, in a desperate attempt to keep the peace, is likely frowning at the mess, feeling the weight of the illness that has taken over their home.

“I’m glad you’re feeling well,” I say, even though we all know she’s not. Deep down, I know this high will crash down soon, and I brace myself for the inevitable.

“I love you, Mom,” I say, swallowing hard.

“I love you too.”

“I know.”

I know.

Stage Three: Anger

Her name lights up on my phone again — the eighth time today. I sigh, dreading what I’m about to hear, but I pick up anyway.

“Hi, Mom.”

“I don’t know what your problem is!” she snaps.

“I don’t have a problem,” I respond, teeth clenched.

“You and your dad are awful. Do you think I’m a child?” she fires back.

Sick Mom has no filter. The kindness and patience of Well Mom have vanished. She’s angry because I made the tough choice to put her in the hospital last time things spiraled out of control, a decision that haunts me still.

“No, Mom. I don’t think you’re a child,” I insist, even though we sometimes treat her as one.

“Your husband should leave you. Your kids deserve better than you!” she yells, and I nod along, knowing it makes the conversation shorter.

It’s heartbreaking to hear her lash out, to witness how illness has twisted her words into something hurtful. I desperately miss the loving, fun Nana who used to spoil my kids with candy and laughter.

“I’m sorry you’re mad at me, Mom,” I say.

“Sure you are. You don’t care about me.” The call drops, and I put down my phone, tears streaming down my face. I know she doesn’t mean it, but the pain is real.

Stage Four: “The Lights Are On, but Nobody’s Home”

Days pass without a call from her. On her birthday, I reached out, and we exchanged a few words, but today is my birthday. Normally, she’d call to share the story of my birth, recounting every detail of that day. But this year, she forgot.

I check my phone again and again, hoping for a call that won’t come. I remind myself it’s okay, that she’ll find her way back, and we’ll have our special moment again. Until then, I scour through old cards, searching for a piece of her voice. I stumble upon a note she sent years ago: “Here’s your mail, Sweetie. Sure do miss you so much. Love, Mom.”

I miss you too, Mom. So much.



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