WACKY AND WISTFUL: LIFE OF A DEMENTIA-IMPACTED COUPLE
By Saralee Perel
There is absolutely nothing funny about dementia. Or is there?
While I was sound asleep at 3 a.m. last night, my sweet dementia-impaired husband, Bob, shook me awake and said, "Are you sleeping okay?"
"Yes, honey. I'm sleeping fine."
As we all know, people with dementia forget what they say. So, at 4 a.m. I was once again roused from sleep: "Are you sleeping okay?"
"Fine, dear."
At 5 a.m. when he asked again, I reacted, "Yes, for goodness sake!"
At 6, I responded: "Are you kidding me?"
At 7, I said, beyond exasperated, "You're waking me up every lousy hour with that same inane question!"
"What question?"
Seething, I reminded him: "Are you sleeping okay!?!"
"Yes," he said, "I'm sleeping fine."
Wait for it. He had to add, "Are *you* sleeping okay?"
I resisted the urge to smother him with my pillow. Now, please don't get annoyed with me. I'm not making fun of everyone with dementia. I am making fun of Bob. I'll tell you; I hate myself when I act irritated. I'm trying, though unsuccessfully so far, to learn that caregivers are only human and that I'm not alone in reacting like a crab at times. Bob has the same kind of dementia that Bruce Willis has, which is Frontotemporal Dementia (FTD) with the progressive variant of Primary Progressive Aphasia (PPA), which is essentially a disorder of communication: finding words, understanding words, speaking words. I learned about Mr. Willis' diagnosis as well as his courageous family's support, upon reading the CNN Health website. This diagnosis is lethal; it's heartbreaking, and it upends lives. You see, my husband was brilliant. Once, he achieved the miraculous feat of being a contestant on Who Wants to be a Millionaire? back when Regis Philbin was the host. Bob won a seat as a contestant over thousands of callers that night by answering rapid-fire questions. One was: Name the five youngest presidents in order of their birth, starting with the youngest. Yet now, he can't add one plus one. This is a man who won 24 blue ribbons at the County Fair for his cookies, breads, and muffins. Although he no longer bakes, I decided one recent day that maybe we could bake his award-winning lemon coconut cookies together. That had to be the saddest day of my life. I had him wear his big, goofy chef's hat and his funny-looking apron with frills, lace, and pictures of utensils. I had all the ingredients on the kitchen counter. He looked carefully at the flour, the yeast, the bowls of shredded coconut and lemons. But he just stood there, looking. Out loud, I read from his recipe: "Mix the juice of 2 lemons with 1 cup of coconut … "
but he couldn't understand what I was saying. Trying to be encouraging, I said, "Why don't you pick up a lemon and cut it in half?"
He just stared at the counter. Motionless, confused. He had no idea what a lemon was. "That's okay, sweets," I said.
I added the flour to the big bowl and handed him the spoon. "How about you stir everything together?"
His eyes fill with tears. He did not know what a spoon was for. This award-winning, blue-ribbon maestro of a baker has forgotten my name. Bob built Cape Cod's first community television studio. I mean literally, with hammers and nails. Then, being a media specialist in grad school, he trained aspiring TV hosts how to make a TV show. He was the Director of Cape Cod Cablevision's Channel Eleven for over 20 years. Bob has no memory of his careers. Yet there are funny times too. When he reached into our big birdfeeder instead of the mailbox, we laughed out loud. I keep thinking about our first kiss. We were in the kitchen area of my studio apartment on Cape Cod. He was just about to chug from the milk carton when he said, "Ugh! This milk has gone bad."
I'm Jewish. Bob is not. "Well," I said, thinking quickly, "it's a Jewish tradition to keep sour milk in the fridge to commemorate the suffering of the Jewish people when they spent 40 years in the desert."
Trying to find something to eat, he picked up a half-eaten brick of cheddar cheese. "It's moldy. It's almost all blue!"
"Well," I stammered, "in Hebrew school, we were taught to keep something moldy in the fridge to remind us that everything decays, rots and dies."
"And this?" He was holding a ratty, torn potholder.
"It's a Jewish tradition that -"
He cut me off by raising his hands into a STOP position. Then the moment seemed to stand still. I was getting oranges out of the fridge. I looked up to see him resting his arms on the top of the opened door. Then I did the most unlike-me thing. *I* kissed *him*. Now, I am a stranger to Bob. I feel desperate. I miss my best friend. I miss brownie parties in the middle of the night. I miss birthdays and hot fudge sundaes at the ice cream parlor where he always gave me his cherry. Last week I met my friend, Marilee, at a restaurant in Hyannis, near our home. After our lunch, we stopped in their bakery where I saw a luscious chocolate croissant that Bob would have loved. But I said to Marilee, "Two minutes after he eats it, he'll just forget about it completely."
I paused that thought. Then said, "But he'll have those two minutes of joy."
So I bought it. Bob loved it. And that fleeting joy was a breathtaking moment in time.
