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 13- Life Behind Locked Doors

* * *
April 5, 1944
To the Greatest Wife in the World,
I know you wonder why I don’t write about the base, but you’re my existence, and my constant prayer is that wherever you are or whatever you’re doing, you’re all right. Honey, we need each other. Dear, I never want to stop writing as it always seems I haven’t told you enough how much I love you. I only wish it was possible for me to hide myself inside this letter and send me to you. When the letter arrived, I would reach out and hug and kiss you with all my might.
It’s you and me forever and ever, baby.
Your loving husband,
* * *
After the holidays, extended family returned home, and I returned to work, but I continued to see Mom and Dad as much as possible on weeknights or weekends.
Often I stopped on Saturday to visit. We’d sit either in their sunny room or the common room, as they told me over and over they’d been lucky in their lives, and were happy to be together. This language replayed like a record album with a scratch, repeating and repeating. These words were a comfort to me, but haunted me as well, because I just couldn’t see how they could be happy in such unhappy circumstances. Going to see them in the locked unit was hard, but leaving Mom and Dad behind those large metal security doors was harder. Making my way to the doors when it was time to leave was difficult because some residents lurked around the doors, waiting for a visitor to key in the magic door-opening code, then they’d try to flee by pushing their way through.
When any visit with my parents started to wind down and come to a close, calculating my exit invaded my thoughts. I’d try to time my departure while my parents were involved with something else. If I visited after work, at suppertime, it was easier to leave because Mom and Dad were distracted by food. I could avoid situations where they might want to walk me to the doors. I didn’t want Mom and Dad to follow me, because then I’d have to explain why they couldn’t go through the doors with me. I’d keep an eye on the metal doors to see when staff or aides were coming or going, then I’d slip out with staff because they knew how to hold back potential escapees.
As I was leaving one night, walking toward the doors, Dad saw me and said, “We’re not allowed to touch those doors.” He knew and understood this basic rule. I don’t know if he remembered that his former freedom and independence existed on the other side of those doors, or if his world had so quickly become so small that he didn’t remember such things, but I’m convinced he was afraid of what might happen to me if I went through those walls of protection into the big, bad world beyond.
For dinner Mom and Dad were seated at a table of four with a petite woman with a beautiful smile. Her skin was flawlessly pink, like smooth Bazooka Bubble Gum, mid-bubble, even though she was in her eighties. She was nearly deaf, but always returned a smile. Mom and Dad seemed to understand she couldn’t hear. When Dad could catch her eye, he took his two index fingers and brought them together in the middle of his lips to pretend to draw a smile on his face, lifting the corners of his mouth as his fingers traced lines up to the apples of his cheeks. She’d smile brightly in return. The pink lady was a model of patience and grace.
Their other tablemate was a tall, thin man, named Carl, who always dressed in jeans and a flannel shirt. He didn’t come out of his room much, except for meals. Carl lurked inside the door of his room, just peeking his head out to see what was happening around the unit. He spoke kindly to everyone and could make some conversation, which was rare in this unit. He did come out of his shell enough that he would walk to Mom and Dad’s room, as well as the pink lady’s room, and tell them it was time for dinner. The four of them became friends, as much as was possible in a unit where people were losing their minds. Whenever I was there, I tried to keep conversation going between Mom, Dad, and the Carl. Every night Carl took a picture of his wife out of his wallet to show to Mom and Dad and the pink lady, saying, “We were married for fifty-three years.” The soft, pink woman would just smile.
Any normal conversation was difficult in this atmosphere of abnormal. Some people sat staring listlessly into space, being fed by aides. One man droned, “Help me.” about every sixty seconds in a low, almost animal-like sound, even though there appeared to be nothing he needed help with.
One woman could not remain seated, but stood behind a chair pushing it round and round between tables, almost like it was a baby carriage. Without speaking she’d bump the pushed chair into the chairs of others, expecting them to move because they were interfering with her stroll.
Another woman made her way around the tables sampling food from people’s plates, not realizing she had the very same food on her own.
One woman spoke only in rhymes and moved around the room patting other resident’s shoulders, hands, or heads––I knew she must have been a primary school teacher.
Another held a baby doll, and either cooed at the baby or sobbed holding the doll tightly to her breast.
The biggest distraction, however, was the man who barked obscenities and was rude to other residents and borderline violent to aides who tried to assist him. Anyone who had to sit near him recoiled. Dad’s friend, Carl, became so upset by these outbursts he once bolted out of his chair to try to fist fight the man who blurted out these foul words. I wondered if Carl thought he was protecting Mom and the pink lady at his table. Afterward, aides had to sedate the irate man to finally quiet him. Dad sedated Carl simply be speaking calmly to him, and shaking his head in a gesture that meant, “It’s OK. Just let it go.
            Mom and Dad both continued to smile. My parents came to view their caretakers as their family.
Often, as I’d leave to go home, I’d kiss them, tell them I loved them, and walk to the door quickly. I’d force myself to look only straight ahead and never back at them, because I knew I wouldn’t be able to mask my emotion if I saw them watching me leave. I would hold my breath to dam up my tears as my shaking fingers keyed in the code to disarm the alarm. Once I was beyond the locked doors the tears would seep out as I walked to my car. The emotional levy would break as I called my sister. Annette became my therapist...