Diann Schindler, Ph.D.
Updated: Mar 22, 2021
Ten years ago, when my mother was 85, she came to visit me from Ohio and as we were catching up in the kitchen over coffee, she was a bit off. Usually engaging, funny, and sharp, her mind seemed to wander. She said her arm itched. At her request, I applied Benadryl cream, but the itching continued.
When she became more distracted, I knew something was very wrong. I took her to the hospital.
Initially, the doctors diagnosed her with a simple case of hives. Not because she had a rash or splotches, but because of her itchy arm. They said she was free to go home.
Just as I was gathering her items to leave, I couldn’t get her attention.
“Wooooo. Everything’s so pretty,” she said as she scanned the ceiling. Her face was a radiant pink and her blue eyes sparkled with wonder, like a 5-year-old seeing a rainbow for the first time. Honestly, she looked angelic.
I took her hand. “Mother? Mom?”
She didn’t respond to me. I called for the nurse.
Mother was having a seizure. Doctors and nurses pushed her bed into another room and told me to follow.
Today, it is still too difficult to describe the details of the next few minutes. Except to say, I knew she was dying.
I inched back away from her bed as they jammed a breathing tube down her throat, causing her tongue to balloon out of her mouth. They ripped her clothes off and tethered her to monitors.
I cannot lose my mother this way….
Just then a nurse whispered in my ear, “She’s fine.”
“She’s dying,” I said.
“No, she’s not. She’ll be fine. We’re transporting her by helicopter to Baptist in Jacksonville.”
I drove and arrived 45 minutes later and met with the attending internist and neurologist.
My mother had shingles encephalitis. The shingles rash was on her scalp, hidden under her hair. Her neurologist put her on serious, mind-altering drugs. I didn’t fully understand it when he warned me that her mind and memory would be forever altered from the seizures.
A full 6 weeks later, her seizures finally stopped.
Before this illness, my mother and I were extremely close. She came to visit me for weeks at a time, before and after I retired. We talked nearly every day. She said we were best friends. We were.
During her hospitalization and the weeks following, her memory deteriorated, as did our relationship. Truth is, she believed I was her enemy.
She stayed with me for 2 months, then returned to Ohio.
By the end of that first year following her seizures, she had cut me out of her life altogether. I was devastated but continued to call. Her wrath was almost more than I could bare.
Two years later, when it seemed she had calmed down, we planned my visit. I drove straight from Florida to Ohio and arrived late in the evening after stopping for groceries. We put the groceries away, had a pleasant conversation, and I fell into bed. The next morning, the groceries were back in the bags and sitting next to the door. Then she kicked me out of the house.
While my heart broke, I repeated to myself: She’s not well. Don’t take it personally.
My cousin who lives nearby started taking care of her.
Of course, I braced myself and visited again. Sometimes she knew me, and sometimes she didn’t. Gradually she forgot she hated me, as far as I could tell.
Two years ago, she went into a nursing home. My first visit was overwhelming. When I saw her, her beautiful blue eyes were full of frenzied fear.
“Get away from me! Who are you?” she screamed. When I said I was her daughter, Diann, she said didn’t have a daughter.
Determined to connect with her, I started singing the songs we sang during my childhood: “A tisket a tasket, a green and yellow basket….” “I love you truly, truly I do….” “Oh, mairzy doats and dozy doats and little lambsy divey. A kiddle divey, too. Wouldn't you?”
Her face softened as she sang every word along with me.
Then, she stopped at looked at me with an enormous smile, “You sound just like my daughter Diann.”
“That’s because I am your daughter, Diann.”
She frowned, “Why can’t I remember anything?”
It was everything I could do to answer. “It’s okay. You remember the words to these songs better than I do, Mom.”
“I’m not your mom,” she said as she jerked her head and squinted distrust again.
I kept singing. So did she.
Since that time, when we talked, she knew who I was for a nanosecond, followed by her sinking back into her mind somewhere. But she said she loved her room and her nurses, and she always sounded happy.
I called her recently, and she was in a rage. I heard her fear again. She asked what the black thing in her hand was. I told her it was her phone.
We had talked for less than 2 minutes when she said she had to hang up. “My mom is calling me to come over there. She says she wants to kiss me. I have to go.”
She hung up.
I always cry after talking to her, missing her, knowing her mind is gone, but grateful she likes her room and her nurses.
This time my tears were even more complicated. I was sad she was scared and sinking into more confusion. And, joyful she thought she was with her mother.
I’m looking forward to seeing her again in 3 weeks.