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Seeing Alzheimer’s through my children's eyes

Dani Klein Modisett is a writer and comedian who just finished a 15 city tour for her most recent book about laughter and love, “Take My Spouse, Please,” (Shambhala, 2015). She has been working in the comedy world for the past twenty yea...

What my children have taught me about Alzheimer’s patients like my mom

“Wanna hug, Grandma?” Gideon, my 9-year-old runs in and asks my mother before I’ve even walked through the front door of the Alzheimer’s home where she now lives. It doesn't matter if she has soup stains on her shirt, her hair is flattened to one side of her head, she’s sitting at a table with six other people in wheelchairs or a table by herself playing with her napkin. As soon as my son finds her, he throws his arms wide open, stretches his mouth to the widest smile he can make and gets his body in pre-hug position. My mother’s 84-year-old eyes light up.

“Yes! Yes, please!” she says.

Then he leans his whole body into her, turning his head to the left so he can press his small chest against hers. She grabs his neck with her long, bony fingers and hangs on to him. It’s a breathtakingly pure expression of love, and a lot for a 9-year-old to take. He usually pulls away first.

“OK, Grandma, I’ll be right back!”

He runs off, either to watch cartoons with some of the other residents or weasel an ice cream sandwich out of one of the kitchen staff. He is unbelievably comfortable at this place.

I’m not sure how this happened, this OK-ness with people whose minds and bodies are in such bad shape. I spend every afternoon with my two children from 3 p.m. to bedtime. I know they’re not saints. I also know that their grandmother’s illness has never been shrouded in secrecy. We visit her regularly. They have heard me talk about it with my husband as well as friends in similar situations. When we are all together, I always check in with my kids. “Are you OK? Is this too much?” I ask. I make it clear that I understand if they are freaked out and want to leave. Certainly there have been times when I felt that way. But I'm also careful not to project my reactions onto them. Not doing this became embarrassingly clear to me last year with my older son.

Gabriel and I spent three months of Sundays volunteering at Silverado, the home where my mother is now living. Our motivation was twofold. He was preparing for a bar mitzvah and public service was one of the requirements. We also wanted to better understand the progression of Alzheimer’s. We had a basic understanding of how the illness attacks the memory, but neither of us had been exposed to how it also breaks down bodily functions, which, even for me, a grown woman, is frightening to see.

After our first shift, I was concerned he was going to have nightmares. We saw people at every stage of the disease: slack-jawed in wheelchairs, arms and legs akimbo, a few of them yelling profanity and hitting their caregivers. As a mother afraid my son might be too young to see all this and the daughter of a woman headed in this direction, that’s certainly all I could see. Gabriel saw all this as well, but it didn’t get in the way of his curiosity.

The first day there, we met a man named Israel. He had a Groucho Marx face and wore his pants pulled up very high. He immediately wanted to talk to us.

“Tell me who you are,” he barked at my son.

 “Gabriel,” he answered, sitting down next to him. “Who are you?” 

“I’m Israel.” 

“Hello Israel,” he said, smiling, ready for the next question.

Israel was not a young man, maybe 80 or so, but his face didn’t look like a person who was done with life yet. He stared at us.

“Where are you from, Israel?” I asked, hoping to keep the conversation going.

“China,” he said.

“China, wow. Have you been here long?”

“One day,” he replied.

Gabriel smiled at me and then at him.

“Do you like it here?” Gabriel asked him.

“No!”

Gabriel let out a small reflexive laugh, taken in by his bluntness.

(Sidebar: If you are looking for a silver lining in the ravages of Alzheimer’s — and who isn’t? — this is one. There isn’t a lot of editing of emotion, which, when it’s not blind rage, can be endearing and even refreshing.) 

For the next few weeks, whenever Gabriel and I went to Silverado, he would immediately look for Israel. If he was sleeping, Gabriel would find someone else to talk to. One time, I came out of the bathroom and found Gabriel standing by the front door holding hands with a frail woman with a striking head of half gray and half brown hair.

“Mom,” Gabriel yelled, “I’m going to take Evelyn for a walk with one of the aides. We’ll be back.” When they returned, I mentioned something about her hair, and how it was kind of sad.

“Why?” Gabriel responded, “She was very happy outside. She likes to walk.”

He didn’t see her hair and her disheveled robe the way I did. He didn’t see a once-active woman stripped of her independence. And he doesn’t see his grandmother this way, either. He’s certainly aware that she is no longer the grandma who navigated through crowds at Times Square so he could buy M&M’s at the M&M's Store. But he also sees the woman who can still laugh at a joke and makes him feel like the most special kid in the world. This is true for both my boys. I love this not only for them, but also, selfishly, for me. When I am able to see her through their eyes, unburdened by a long and complicated history, I'm able to enjoy her right now, in the moment, which, as any self-help guru or family member of someone with Alzheimer’s will tell you, is all we really have.

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