How quickly I go from elation to despair—from reveling in my brother Simon’s impromptu three-day visit to anguishing over the person most missing from our core family gatherings. The person. The one colorful, generous, loving, joyful mother who sits in her closed Alzheimer’s ward with no concept of being missed, no concept at all of who we are or what we mean to her, or she to us.
Today when we visited, we sat outside in the courtyard in the warm sunshine and played ball to show tunes and songs by The Beatles. Mom is still coordinated enough to catch and throw the ball, but she was incapable of kicking it with her feet or even stamping them in time to the music. Not only does Alzheimer’s affect areas of the brain that are related to memory recall, it also disrupts the executive functions, those linked processes that allow us to achieve a goal. Executive functions is an umbrella term for the neurologically-based skills involving mental control and self-regulation. If dementia affects those areas of the brain that control movement and balance, Alzheimer’s patients can lose the ability to walk and perform everyday tasks. We had to help Mom stand, as if she had forgotten how to use her legs.
“I don’t have feet,” she said.
Did Mom enjoy herself? She laughed and smiled, but only some of the time. She also, at times, retreated to a blank, internal place where we could not reach her.
Mom did call both Simon and I by our names. And when Daddy played “Take the A Train,” by Duke Ellington, Mom quipped, “Where’s the B train?”
I hadn’t expected to see Simon until next year since he was here in August. But a work commitment in Paris meant that he had a few days to spare on his way home to California. The three of us—my dad, Simon and I—spent as much time together as we could. We ate ice cream (in November!), played word games, spoke about our lives, went on a short hike, and celebrated Simon's upcoming birthday with too much good food. (While on the hike, one of us (who shall remain nameless) fell on the unpaved path and injured his palms.)
When Simon next sees her, Mom will have deteriorated even more. This terrible illness, this slow dissolving of Mom’s essence into nothingness, is devastatingly hard to bear. Having Simon at our side makes it a little more bearable, though.
I’m the more serious child in our family, and Simon was always the class clown. His visit was a happy shot into my system. I can’t reproduce his exuberance, but I can allow myself to find the joy in my daily being. Life is not only one thing. It is the light and the darkness, the hope (“Got hope?” Simon’s t-shirt read) and the misery. I have two parents who need assistance in very different ways. Daddy and I will continue to support each other in our non-Mom lives, and we will try to make our visits with Mom as meaningful as we can as we encounter each new setback that Alzheimer’s presents. It is the most I can do.
Happy birthday, Simon!
I remember celebrating rich Thanksgiving meals with friends in New Jersey. We’d go for the weekend, eat until we were stuffed, watch the special movie airing on the TV channels that would scare me silly—The Wizard of Oz or Chitty Chitty Bang Bang—then spend hours pretending to fall asleep. (It galls me that my kids laughed—yes laughed!—at the terrifying dinosaurs in Jurassic Park!) I have a vivid memory of waking in the night and not being able to find the door to the hallway, my hands tracing the walls of the bedroom searching for the handle, feeling trapped and frightened. An adult eventually rescued me. And, oh, the food! As immigrants to the US, my parents didn’t quite know what Thanksgiving was. We stumbled along those early years, learning from our friends and neighbors. Now it’s a part of me, and even though I no longer live in the US, it is nigh impossible to separate me from that bountiful tradition. Of course, you don’t only have to eat turkey and stuffing. Here’s an orange lentil dish that will satisfy your vegetarian and gluten-free friends.
Orange Lentil and Spinach Dahl
I really liked the tasty yet mild spices in this dish. Serve with rice for a complete meal, or eat it alongside your turkey and stuffing.
1½ cups orange lentils
1 Tbsp olive oil
3-4 cloves garlic, minced
1 onion, chopped
1 tsp cumin
1 tsp turmeric
½ tsp mustard
½ tsp dried chili pepper flakes
1 Tbsp fresh ginger
400 gr / 14 oz can chopped tomatoes
100 gr / 3.5 oz baby spinach leaves
2 Tbsp chopped parsley
Salt and pepper to taste
Cook lentils in 3 cups water for 10 minutes, then drain. In a large frying pan, sauté garlic and onion, adding spices when onion becomes translucent. Add tomatoes and drained lentils to pan. Let simmer about 15 minutes. Add a little water if needed. Fold in spinach leaves and parsley and simmer another 5 minutes or until spinach leaves cook (wilt and reduce in size). Serve hot.