Tell Me More

Tending to Endings (eleven)

I generally don’t focus on regrets. My mom taught me that. There is no point to stewing over what you can’t change, she would say, unless you like to feel bad. And she’d give her small knowing smile. But sometimes the moments I wish I acted differently provide a helpful contrast, a non-example we would call it in education lesson planning.

There was a morning about five Christmases ago when my sisters and their families and mine met in Maui for the holiday. My mom, 75 at the time, did not seem elderly. She walked a couple miles each day. She was very involved with friends and community and life. But there were noticeable memory lapses, more than grasping for a word or mixing up grandchildren’s names.

On this morning, one of my nephews— I will call him Chris here—joined Mom and I in the elevator and was looking at his phone on the ride down to the lobby. When the doors opened, he said, goodbye to us. After he left, my mom said, “Chris didn’t even say good morning. You’d think he didn’t appreciate that we brought everyone here to be together.” I heard hurt and anger in her voice.

I was confused and a little defensive on Chris’s behalf. Mom didn’t believe in using guilt. The sentence didn’t sound like her. Also, we had just had a really good conversation with Chris. He had come to see her first thing that morning.

“I don’t think that’s how he feels,” I said, “We were just talking to him in the condo. He said good morning then.”

My mom stopped walking. “We did? I don’t remember that.” I could tell from her worried look that she really did not remember the conversation we’d had only about twenty minutes earlier.

“Yes, remember, we talked about walking to breakfast tomorrow morning.”

“I’m losing my mind,” my mom said. “I don’t know what’s happening to me.”

“You’re ok, mom. You just forgot.”

“I don’t feel ok.”

I don’t remember everything I said, but it was along those same lines. We all forget things sometimes. You are fine!

What I wish I was able to say in that moment instead is: Tell me more about what that feels like. It sounds like it might be scary and I don’t want you to feel alone.

Today I see that my own fears got in the way of being able to hear what my mom was saying. I couldn’t see the opportunity, that she was reaching out to me.

It was a year before my mom was diagnosed with Alzheimer’s, and even longer before I learned to not try to correct or adjust her perspective and instead listen to her feelings. (Something that has proven incredibly valuable in other circumstances if I remember to do it!)

Sometimes I think Alzheimer’s is going to be the thing that finally helps us to turn into a more compassionate culture—compassion for those with cognitive differences, compassion for caregivers and families, compassion for ourselves. One in three seniors dies with Alzheimer’s or another form of dementia. And with more and more of us living to old age, the number of people living with Alzheimer’s is likely to almost triple by 2050. Chances are high that each of us will at some point be close to someone who is affected.

Loving someone with Alzheimer’s means drawing close to a person who is undergoing profound loss. It is a heartbreaking disease that makes everyday life unpredictable. It is difficult to not let fear take over.

But not everything was as bad as I feared. I may regret moments, but I am so very grateful for all of the time that I did have with my mom and all that I learned. I found patience and open-mindedness and compassion are incredibly helpful. So is community. So is self-forgiveness.

Earlier this week a friend and I were talking about how before you know the disease of Alzheimer’s intimately, you think your loved one not remembering you would be the worst thing. It’s what people often ask—Did your mom know you? It was a question I didn’t even know how to accurately answer.

One afternoon my mom’s friend Pat came to visit. My mom wasn’t eating or drinking much. Pat had brought egg salad which had always been a favorite and mom ate spoonfuls from the bowl and groaned at how good it was.

Pat sat close to my mom who was reclining on the chaise lounge on the lanai.  

Mom said, “We’ve had a lot of special times together, haven’t we?” I could tell she was searching. Mom had learned over the years to prompt people into giving more context.

Pat held my mom’s hands and looked into her eyes. “Yes, remember our parenting group when all of our kids were small? We’d gather in your kitchen.”

“Oh, I remember that,” my mom said. And I could tell from the glint in her eyes she did.

“And then later we used to come here to Maui and sit out on the lawn of Mahana and talk about books and try and solve all of the world’s problems!”

Mom laughed. “We have a ways to go on that one, don’t we!”

After awhile, Pat had to go, and I walked her to the door. When I returned to the lanai, my mom was staring at the empty chair where Pat had been, and continuing the conversation. “Pat, how are your children doing?” she said, staring intently at the empty chair. I slipped into it and smiled back. I held her hands. I answered as though I was Pat. My mom remained animated, happy. We talked and talked.

I remember that moment as a joyful one. It turns out, my worst fear was not that my mom wouldn’t remember me. It was that my mom would feel afraid and alone at the end of her life. I knew my mom had a very good life, and I didn’t want her ending to be tragic.

My mom had many challenges and difficulties at the end, but it was not tragic. She was surrounded by love and she knew it.

One morning a couple months before her death, my mom and I sat where we had shared coffee so many mornings. We looked out on the Pacific Ocean, the water and the sky still gray in the early light. She said, “It is so beautiful.” 

“Isn’t it? Aren’t we lucky?” I said. And when she turned toward me, I could see from the searching look in her eyes, she wasn’t sure who I was.

“It’s ok if you don’t remember this—you have an illness that jumbles up time and place sometimes—but I am your daughter.”

“Really?” she said. “I don’t remember, but you feel familiar.” She smiled. “I have a warm feeling toward you.”

We sat, then, with our arms touching watching the surfers on their boards waiting for waves, watching the sky turn pale, then pink, then blue.

I think now about how close I felt in that moment to my mom, a woman who did not remember that she birthed me, yet knew me still.

For those in the Boise Area, the spring Death Cafe has been cancelled. You can find more info about upcoming related events on the Boise Death Cafe Fb page.

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