Understanding What It’s Like To Live With Alzheimer’s

Estimated reading time: 4 minutes

Who are you?

Those three words send shivers down my spine. Dread fills my mind from the inevitable scenario when my dad no longer knows who I am.

Nearly six years ago, we received the heartbreaking news that my dad had Alzheimer’s disease. It wasn’t a big surprise. On my father’s side of the family, Alzheimer’s is relatively common. My grandfather, two great-uncles, and two uncles had Alzheimer’s or some form of dementia. I remember as a teen seeing my grandpa with this vacant stare most of the time. There were moments when I could see that mischievous twinkle in his eyes and that boyish grin; those were his good days when he was more cognizant. As his condition worsened, he did not recognize anyone or know his surroundings. Becoming a stranger in his own home, he became belligerent. Seeing this once robust man reduced to a fearful, overgrown child was heartrending.

What is truly sad are the depressing statistics of this disease that ravages an otherwise healthy mind. According to the Alzheimer’s Association, every 66 seconds, someone in the U.S. develops Alzheimer’s. An estimated five million Americans are living with it, and it’s the sixth leading cause of death. These facts are scary, and I can only imagine what my dad is thinking.

I’m certain the events of my grandpa’s fight with Alzheimer’s replay like a bad YouTube video in my father’s mind. The knowledge of how his future will play out, like his dad’s, most assuredly made him decide not to reveal his diagnosis to my brother and me until a few years ago.

Even then, he couldn’t say the word Alzheimer’s, only confessing that he was having memory problems. But after this last trip to the hospital, I knew the truth as the nurse rattled off his medications. My dad just lay on the bed, looking helpless and embarrassed. All I could muster was a weak, knowing smile on my face as I patted his leg. Staring back at me with his deep blue eyes was a man stricken with fear and helplessness. How do you comfort someone who has been your rock, your rough and tough John Wayne type of figure in your life? My instincts took over. I did the only thing I knew. I told him I’d always be there for him no matter what happened. I told him how much I loved him; I hugged him.

I figured my love and support is all I have to offer, but for this long road ahead, it will have to be enough. As I prepare for those good days versus bad days, I’ve educated myself. Gratefully, my dad still knows most of those close to him. However, I am starting to see cracks in his tough-guy exterior. Occasionally, he blanks on what he was about to do or say. He’s even gotten confused about parking his beloved fifth-wheel camper, something he’s done hundreds of times.

I think the hardest thing I’ve witnessed is on his off days when he sounds like a young, frightened boy on the phone. His voice is much higher; he speaks rapidly and seems scattered in his thoughts. I could tell things weren’t connecting, but I deal with them by smoothing those rough edges, so he maintains his dignity. We speak frankly with each other, but at times like these, I add extra gentleness to our conversation. He doesn’t need my judgment or correction, only my love and acceptance.

I’m playing the parental role more. I’m the stronger one while giving him gentle guidance and reassurance that I’m not going to leave him in his time of need. This may sound noble, but I wasn’t prepared to become the adult in my father-daughter relationship. I’ve had to come to terms with this illness, too. I’ve cried a river full of tears for not only his loss (and losses to come) but my loss of the familiar and strong safety net I call dad.

For now, each day is a gift to us. He wakes up still knowing who I am. I wake up knowing my father is still with me. It is only a matter of time when I become an unfamiliar woman visiting and calling every day. I feel that blank stare coming and that eventual question … who are you?


Originally published Feb 28, 2017/Odyssey

Lisa Mildon

Lisa Mildon is an offbeat geeky wordsmith, storyteller, and founder of Creatively Caffeinated. She has extensive editing and writing experience in non-fiction, fiction, poetry, and technical writing. In 2018, she graduated Summa Cum Laude at SNHU in Creative Writing and English. Lisa loves PC gaming, science fiction and is obsessed with traveling. A self-professed Whovian, she aspires to write for the TV series and in books. With her husband, they have 3 rescues, 2 adorable Rat Terriers, and 1 fat cat.

Previous Post
Next Post