Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Chapter 19- Dad Joins Mom in Heaven

* * *
May 21, 1944
My Dearest Wife,
            Sweetheart, I absolutely love you with all of my heart. Honey, do you remember the four-leaf clover? I still have it in my shirt pocket.
 I’m glad you’re practicing the typewriter. You will make good, my dear.
I don’t mind saying I’m lonesome. I’m looking for an apartment for us. Even if I thought we could be together for just a little while, I would be all for it.
I made $138.43 this month. We could have one room, a little room in the back for cooking and a bath to share with another couple. It’s a heck of a way to live, but we’d be happy. I’ve thought of what you said after our wedding, “Life’s too short.” I guess it’s true, why worry about future, security, position; we want to be happy together. You’re changing me, my darling. Write honey, and tell me what you think.
Your loving husband, forever and ever,
* * *
After being at Mom’s grave, I decided it was just too hard to leave my phone on during school hours. It wouldn’t matter when I arrived after any injury. In case of an emergency, The Lodge could leave a message for me at school. So, for about a month, Dad’s Hospice nurse and I had been leaving voicemails for one another. When I visited Dad on the weekends she was off, so we didn’t cross paths. She’d left routine updates when I was at work, and by the time my students were gone for the day and I called her, her shift was over. Finally we were able to connect by phone on the Friday before my spring break. She concurred with my perception of Dad’s vast mental decline, and his shift from happiness and contentment to sadness and discomfort. I spoke with her about the faith of our family, and said we were at peace with his inevitable passing whenever it should occur. In fact, I told her we were actively praying for his release. The Hospice nurse told me Dad could live yet a couple of months.
I stopped to see Dad on my way home from work that evening. Nurses suspected Dad might have a urinary tract infection, which could be contributing to his overall anxiety. Aides described him as having periods of being ‘wired’ and ‘crashed.’ Hearing these words made me think he must have periods of increased activity and then sleep, but that was not what was meant by these terms at all.
As he saw me, he sputtered, “Hey, hey let’s go.” So, I proceeded to take him out of the locked doors to gain some privacy, hoping to sit quietly by the fireplace––however he became very agitated as we passed through the doors. He was trying to power the wheelchair with his feet in the wrong direction. I began to think I wasn’t going to be able to control him, and I almost had to ask for help to return him to the locked unit.
Observing him when we returned, I witnessed his wired state, meaning he started wheeling his wheel chair back and forth across the common room, moving it by pulling with his feet (almost like he was pacing). He could not be still. He rolled from one end of the room to the other, repeatedly.
Aides told me he could not even be still enough even to eat during meals. He would chase every person who passed by rolling his wheelchair, saying with great confusion, “Hey, hey, let’s go!” He wheeled himself back and forth to the security doors pushing on them, setting off alarms, trying to get out. There was no stopping, soothing, or pacifying him.
I heard him say he had to go to the bathroom. An aide wheeled him to the bathroom, but by the time he had gotten there, he’d forgotten he needed to relieve himself. As aides tried to assist him, he moaned and cried in pain, then became combative.
It was so hard to see him that way––he’d never been belligerent before. Aides told me this was a typical reaction from him now. It was devastating to see Dad’s happy personality be replaced by desperate confusion. I felt helpless, but knew there was nothing I could do––nothing anyone could do.
Aides told me they understood this was hard for me to see. Choking back tears, I responded that I believed Mom must be calling him to heaven very loudly now. Trying to lighten the mood, one of the aides said, “Well, he's not listening. Isn’t that just like a man?” She coaxed a smile out from behind my welling tears as I shook my head, bewildered...