Editor’s Note: The following excerpt from “My Parents and Alzheimer’s: A Daughter’s Story” (ISBN 0-533-13551-6) is reprinted with permission by the author Janet M. Stone. For more information about Janet and her book please visit: www.janetmstone.com
“I have a fervent wish to reach as many families as possible that are struggling with Alzheimer’s Disease. I have some genuinely inspirational and practical offerings for them.” (Page 234)
I wanted my father to sense he was in a family setting and to keep vibrant life happening around him. Each day when the elevator door opened and there he was, seated in the hallway in front of the nurses” station, in a semicircle with four, sometimes five, other patents, I joined them rather than the two of us going off to visit alone. I saw this group as a golden opportunity to unite ourselves with the others; it was a pure creative opportunity.
I elected to sit on the hallway table because o the possibility of urine on the chairs, I thought of my mother, whose feet often didn’t quite reach the floor. Swinging my legs back and forth like a child on a picnic bench released my girlish creativity. Yet I didn’t know quite what to do. I felt very self-conscious with the nurses seated at the desk behind me. I had dry myself the task to continue caring for my father; I sensed the others wanted something to happen for them also. The energy in the group was high; so was my father’s mood, I said to myself, Go for it, Janet. Get some life going for these people, and what better way than to josh around with your father?
I had developed a perspective on his behavior, and I could tease him about his rigidities when his mind was clear and he could reflect on himself. I began in much the way I had at home. In the old days he was only comfortable with his nose to the grindstone. Nowadays he was an easier sell. In his Alzheimer’s the responsible rigidities just melted away, his sense of humor came out of hiding, and he twinkled like a child.
“Daddy, when I was little, your were so ethical, so moral, and had such high standards that your were considered a prude.” Where did that come from? I nearly bit my tongue to keep myself from going on.
“Sounds good to me.” His boyish smile told me I was on safe ground. The idea was so universal that the people who were sitting around caught the sense of it and howled. This encouraged me more.
“One Saturday afternoon I went to the movies. I know it was Saturday because you didn’t allow us to go on Sunday. You said Sunday was family day. Why, you didn’t even play golf on that day.
“Is that right?” With the mention of golf I was hoping he was seeing rich green grass.
“Yes, and I got into the theater for underage. I was thirteen and I paid for a twelve-year-old’s ticket. My only mistake was in telling you I lied.”
“You did that?”
“Yes, I did that. But you made me go back and pay the manager the difference.”
“Good; I did that right.”
He laughed; I laughed; they laughed. It felt good.
Among all the patients, Myrtle held a special place in my heart. She was petite and perky like my mother, depending on what chair she was in, her feet barely reached the floor. One day early on, I heard her chuckle to one of the nurses, “Jesus, Mary and Joseph, what are you talking about?”
I turned around and laughed out loud, “What, were you and my mother in the same catechism class?”
She shook her head, “Probably.”
We bonded from that day on. I followed my intuition. One day when I looked at Myrtle, I saw my mother and I thought, Garters. Before I knew it I was off and running.
“Myrtle when you were younger, did you wear garters?”
“Of course I did!” Her sense of timing, her facial expression, made her a stand-up comedian’s dream.
“Did you wear the round blue wedding-style garters or those that had hooks?”
“Both.” She rolled her eyes as if to say, “Doesn’t this girl know anything?”
“So did my mother.” But she only wore the round ones on hot and humid summer says. In the winter they were stored in her sewing box.
I looked at Harriette, who had been a physical education teacher and whose father had been a coach at Boston College, of which she was mighty proud.
“Harriette, did you by any chance wear garters to work?”
“Heavens o! You’d never catch me wearing those things. I taught girls basketball.”…
I quickly learned not to talk about my children or other family members with the patients because they couldn’t follow me. Their loss of the sense of self made it impossible to hear about other selves…
I realized gradually that what I needed to do was focus entirely on their sense of enjoyment that was re-creating for them a sense of self and vibrant life. Trained through my relationship with my father, I learned through conversation about the individual’s past, and this helped me to elicit more memories. I was trying to gather as much information as possible, so that I could give it back to them at our next visit. I had learned to accept their repetition rather than let myself be unduly irritated by them…
I chose not to dwell in doubts and depression. I viewed the more lucid patients as needy but preferred not to look at them or my father as terminally ill.