I was just trying to do the right thing.
There’s been a minor flurry of media attention around Mom’s dementia in the last year, and it’s all my fault. I have been working on a new play about caregiving (Blackberry Winter by Steve Yockey, with Out of Hand Theater). The Atlanta Journal-Constitution did a story about the play. And more recently, Mom and I were featured in an article in the Alumni Bulletin of Randolph College, which we both attended.
Founded as Randolph-Macon Woman’s College, our alma mater went co-ed just a few years ago. For Mom and me, Randolph-Macon was a haven of smart, funny, gutsy women who wanted an education outside the patriarchal mainstream. Mom graduated in 1948 with a dual major in chemistry and math, and went straight to work in nuclear medicine. I graduated in 1982 with a French degree and a background in theater, and wound up with a bi-lingual acting career.
Randolph-Macon is one of the ties that bind Mom and me. I have a vivid memory of sitting under a tree on the verdant front lawn my freshman year, struggling with a math assignment and realizing for the first time in my life that my mother was highly intelligent. I don’t know what I had thought before; I knew she was a college math professor and had been a research chemist, but I always saw my dad as the scholar in the family. With degrees from Georgia Tech and Virginia Theological Seminary, he was a true renaissance man, a civil engineer who’d been ordained.
Mom, on the other hand, was Florence Nightingale, Suzy Homemaker, Betty Crocker, and Dr. Seuss – the loving, unassuming teller of bedtime stories and singer of lullabies who sewed all my Halloween costumes. Sure, she taught at the local community college, but so what? I imagined that she’d been handed a teaching diploma and put to work; I’d never pictured her clawing her way through a college curriculum that was now giving me serious doubts about my academic future.
I soon learned to consider my mother a Force to Be Reckoned With.
The other night I dropped by to show her my copy of the Alumni Bulletin, with its cover story and several side articles about Alzheimer’s disease, including the one about us. I’d hesitated to show it to her, because I don’t like to remind her of her own dementia. We do talk about it, but only when she brings it up; she refers to it as “memory loss”. But a couple of her classmates had written to her since reading the article, and I thought she should see it.
It’s written with compassion and sensitivity, and presents her as brave in the face of a challenging situation. It also contains quotes from me about the anxiety and frustration I felt when we first began learning to deal with this. Mom read the piece slowly, and seemed to find some parts painful, others encouraging. She didn’t like being portrayed as “demented”; she thought the focus should have been on what a good life she has in spite of her setback. I told her I thought telling our story honestly could help other people feel less alone. She smiled.
Then we opened the mail from her classmates, one of whom wrote to say she too has been diagnosed with Alzheimer’s. She was touched by Mom’s story and wanted to stay in contact. Another classmate wrote to commiserate, saying that at this point, they all have one health problem or another. Such lovely friends my mother has, after all these years.
I came home satisfied that I’d done the right thing. Until the phone started ringing.
Mom called several times that night, angry over the way she was presented, frustrated that the magazine had been mailed to my address instead of hers, generally unhappy. I tried to help her relax, but she’s going to feel whatever her mind decides to feel. All I could say was, “I’m sorry it feels that way to you, Mom. I think the article might help people deal with this experience in their own lives. I hope it will.”
The third time she called, I was ready for a scolding, but she said, “I’ve decided that if the article helps people, it’s a good thing. I just wanted you to know I’m not angry anymore.” There were no more calls that night.
Yet the next morning when I went to visit, we were back on the roller coaster: “You told them I was crazy! My classmates are sending me sympathy cards because you told them I was crazy! I’m not crazy!”
Me: I’m so sorry, Mom. It seems like I crossed a line you really didn’t want me to cross. I didn’t mean to.
Mom (calming down): I know you didn’t.
Me: What do you want to do?
Mom: I want to take you shopping and buy you something nice . . .
Did I do the right thing? Was it wrong of me to tell my mother’s story in a forum where her beloved classmates would see it? Did I betray her trust? Are these blog posts a betrayal? Is Blackberry Winter? Should I let my highly intelligent mother be remembered for the remarkable person she was, and keep my mouth shut about her final years?
I don’t know. All I know is, we’ve got a country full of baby boomers who need to talk about their parents’ cognitive issues before they start having issue of their own. We have a culture that’s terrified of cognitive decline. Many of us would (understandably) rather live in denial than build new systems of care. I think it’s high time we had this conversation. I don’t want to embarrass my mother, but I need to talk about dementia, not sweep it under the rug for the sake of polite society.
Mommy, I’m sorry if I’m letting you down. All your life you have gone out of your way to help people. Telling your story is my way of helping. I wish I could tell you that, but I think you’d rather not know. So I’ll only say this: I’m trying to follow your example, Mom. I’m just trying to do the right thing.