I haven’t spent my May 2nd birthday with my mother in many years. I’ve been living in California and only visited her in Mt. Kisco, in New York’s northern Westchester County, in the summers. After Mom turned 98 on her birthday in January and her cognitive abilities deteriorated further, it became very clear that talking to her on the phone and getting reports from my New York-based sister Susan and from Sandy, Mom’s live-in caregiver and majordomo, that I wanted to be close by; that I needed to be close by. There were other good reasons to move back to CT but Mom was the primary one. Celebrating my birthday with her, as I did in the photo above. was a treat.
What I’ve discovered spending time with her is that she’s holding her own in many ways. She still has an amazing vocabulary, still has her sense of humor, still remembers plenty. But she doesn’t remember plenty too. Gone are the anecdotes about my childhood. Gone are the anecdotes about her two husbands, my father and stepfather. Gone are the anecdotes about her friends, most of whom she has outlived.
But just when the sadness of all this creeps into my head, I remind myself to find the silver linings in Mom’s dementia. My book, You’d Better Not Die or I’ll Kill You, was all about finding the silver linings in caring for a loved one with a chronic or progressive illness. I not only wrote about the humorous side of being married to a man with Crohn’s disease, but I encouraged the other caregivers I interviewed (a mother whose son is autistic, a wife whose husband has MS, a son whose two parents had Alzheimer’s, etc.) to find humor in their situations too. Being able to find the positives in even the darkest times – and laughing about them – keeps us sane.
So….what are the silver linings with my mother?
For one thing, she’s no longer estranged from her older sister. As I wrote in The Huffington Post a while back, she forgot she was mad at my aunt after ten years of their not speaking to each other, picked up the phone one day and called her. The conversation was friendly and cheerful as if there’d never been an angry word between them. (My aunt, who’s 100 now, has the same level of dementia as Mom.) They’ve been good buddies ever since. How that’s for an upside of dementia.
For another, every time I come to the house to visit Mom now, it’s a pleasant surprise to her. “Nobody told me you were coming!” she exclaims as soon as I walk in the door, even though I’ve spoken to her only minutes before on the phone to let her know I’m on my way. “This is such a wonderful, wonderful surprise! I can’t get over it!” See? Another upside: my mother is always really, really happy to see me.
But the most personal upside by far has been the fact that my mother’s dementia has changed the way she feels about my writing career. Let me back up and explain.
During a recent phone call, she said, “What’s new, dear?”
“Just taking a break from writing to say hi,” I told her.
“Writing?” she said.
“I’m working on a new novel,” I said.
“You write novels?” She sounded flabbergasted. “Nobody told me that!”
I thought I’d misheard her. A former college professor of Greek and Latin, she values words and had never forgotten that I earned my living through words. It was as if she’d suddenly forgotten who I was.
“Why don’t you walk over to the bookshelves across from your bed,” I suggested trying not to show how shaken I was. “You’ll see a lot of books with my name on them.”
She put down the phone, went to look, and came back on the line. “Oh my goodness! I can’t believe my daughter writes novels! I’m so impressed, dear, and so proud. I bet they’re the best novels ever written.”
Well, now she had done a complete one-eighty. I write romantic comedies – novels that have hit bestseller lists, been translated all over the world, and sold to Hollywood. Most mothers would be thrilled to have a daughter who was a successful author, and Mom was thrilled. She called me her “little celebrity,” woke up early to watch me on the “Today” show, and planted herself in the front row at my bookstore signings where she bought multiple copies and had me autograph them. Naturally, I’d assumed she read the books too. I was wrong. She didn’t read them, certainly not all the way through. And the fact that she didn’t – I discovered this after I’d just given her the galley proofs of a forthcoming novel and minutes later found her combing my library for “something good to read” – was like a stab in the heart.
Mom and I had always shared a very close bond. She was my anchor after my father died when I was six. I followed in her footsteps in college and majored in Greek and Latin. I graduated Summa Cum Laude, as did she. I earned a Phi Beta Kappa key that she wore on her charm bracelet. We were smarty-pants women together, rolling our eyes when grammatically challenged people said, “Between you and I.” So imagine my hurt to learn that my novels weren’t up to her intellectual standards, that my work was the sort of facile, mass entertainment she dismissed. The knowledge of her disapproval created a breach in our otherwise loving relationship that was always lurking beneath the surface, unspoken.
And yet now, during our phone call, Mom had just validated the work I had spent my adult life laboring over. In her cognitively impaired state, she had uttered the magic words at last: “I bet they’re the best books ever written.”
So yes, caring for aging parents with dementia can be a struggle and there are times when you long for your parent the way he or she used to be, but when there are silver linings, we have to grab them with both hands. I grabbed my mother’s compliment about my books and will never let them go.