My dad is on the front lines of Mom’s Alzheimer’s. He bears the burden of being Mom’s primary caretaker. He schedules and takes her to doctor’s appointments. He is her emotional touchstone, and he is painfully aware of her need for his constant presence.
From my perspective, Alzheimer’s has brought blessings to our family almost as much as it has brought heartache. Here’s what I mean.
We used to say that Daddy never suffered fools lightly. I remember as a child his impatience when he tried to teach me math or his anger with my brother Simon when Simon indulged in age-appropriate—and annoying—antics. We were afraid to ask him to help us with our homework because we'd get a lecture in response, no matter what the topic. Daddy was (and still is) very opinionated. If you could not keep up with his arguments, or give back in equal measure, Daddy had little interest in continuing the conversation.
My parent’s roles were clearly defined: Mom, the housewife; Daddy, the bread winner and intellectual. Even though Mom held down a job for most of my school years—even rising to executive director of a synagogue—she was often belittled for her silliness. We had a running family joke that when we watched movies, Mom could never tell the good guys from the bad guys. She was always more heart than head.
When Mom first started showing signs of Alzheimer’s, Daddy became even more impatient. If she insisted, for example, that the defrosted chicken was fish, he wanted to drag her back to reality, no matter how painful and frustrating it was.
Simon and I would tentatively suggest that Mom couldn’t help misplacing items or buying the wrong things at the store or forgetting what day it was. It’s not her fault, we’d say. And we cautioned that it would only get worse.
Mom was angry and scared about her memory loss. More than once she sobbed in my arms because, as she said, something strange was happening to her. In order to keep her calm, we had the responsibility for conducting our interactions without anger. What does it matter, we’d ask, if she claims the chicken breasts are really pieces of sole? This is her reality. It only hurts her to insist otherwise. But we also weren't with her all day every day.
Alzheimer’s has stripped Daddy of his life partner. Often, she thinks he’s her father rather than her husband. She is no longer capable of involved conversation. She can’t watch or understand movies. Daddy is lonely; he misses his wife.
On the other hand, Daddy is a changed man. He has become patient and loving. He has by necessity accepted the changes that Alzheimer’s has wrought. When he’s out at meetings, he calls home because he knows Mom gets anxious when she’s away from him. He can make Mom laugh even when she’s in the midst of an anger attack. And he tries very hard not to give in to the frustrations of living with someone who asks the same questions over and over again. There is still an intimacy between them that has been built up over the many years of their marriage.
These are the blessings in the heartache.
What better way to honor my parents than by presenting a sweet recipe that’s just right for Thanksgiving. We give thanks for enjoying Mom as she is now. The alternative it too difficult to contemplate.
Sweet Butternut Squash Kugel
I love this kugel. It reminds me of pumpkin pie, but with a sweeter taste and a creamier texture. Worth the time it takes to cut, cook, and spoon out the pumpkin meat.
2 butternut squash
¾ cup brown sugar
1/3 cup oil
½ cup flour
½ cup orange juice
1 tsp salt
With a long, sharp knife, cut the butternut squash in half length-wise. Scoop out the seeds with a spoon. Oil cut side with fingers and place halves cut-side down on a baking paper-covered baking tray. Bake at 350° for 30 minutes or until the thickest part of the squash can be easily pierced with a knife. When squash is cooled, spoon the meat of the squash into a mixing bowl. Add remaining ingredients and mix thoroughly. Pour into baking dish. Sprinkle top with cinnamon, and bake approximately 1 hour at 350°.