Changes

“I have to pee,” my mom said, moments after I arrived for our visit. We were entering her room, and so I turned her right around and took her into the hall bathroom. The sink in her room was broken, and I wanted her to be able to wash her hands afterward.

The hall bathroom has a shower and a separate toilet, with a sliding door. I led her to the toilet.

“Wow,” my mom said. “What do I do?”

“Well,” I said, “you pull down your pants.”

“Like this?” she asked, managing to get them down to her knees.

“Yes, and a little further,” I said. “And then you sit on the toilet.”

“What is this all about?” she asked, sitting down as I tried, from the other side of the door, to slide it closed. I didn’t really want to watch her.

“I’ve never done this before,” she said.

“Oh, I’m certain you have,” I said.

“My mommy never did this,” she said against the sound of tinkling.

“I’m sure she did,” I said.

“Do you do this?” she asked.

“Yes, I do.”

“Every day?”

“Several times a day.”

“Oh wow. I can’t believe it.”

She needed help with the toilet paper.

“How much do I take?”

I couldn’t help without opening the door and joining her. So I did.

After we left the hall bathroom, we had a cookie and a call with Kathy and then a nap. It was a nice visit.

A few weeks ago, we had the type of visit we haven’t had in a long time. She was upset and fretting about her inability to make sense of anything. She seemed aware of the loss she’s experienced and was grieving it.

For a little while, I couldn’t tell if I wanted her aware yet suffering or happy and totally out of it. (Wait. I still can’t decide about that.)

“Help me!” she called out to me from inside the bathroom in her room that day. She was worried she was going to clog the toilet and wanted me to intervene somehow.

“You’ll be fine, Mom,” I called back. “Don’t worry. Everything will be fine!”

“Please, please help me!!”

It had been a long day and I just wasn’t up to dealing with my mom’s bowel movement.

“Everything will be fine, Mom!”

“Help me!”

“I promise you everything will be fine! Just finish and flush!”

“You hate me!” she said. “You hate me. My own brother won’t even help me.”

She repeated it many times as I sat on her bed, unable or unwilling to move.

It doesn’t bother me when she thinks I’m her brother. Or when she thinks I’m her sister or her mother. Or when she forgets she even has a daughter named Beth, or any children at all. When all she remembers is her mother. In some ways, she’s climbing back into her mother’s womb. I can live with that.

But I hate when she takes me back to childhood, accusing me of hating her and trying to control me by guilting me. It doesn’t happen that much these days. And for that I thank Alzheimer’s.

The last time I visited, last Friday afternoon, we sat in the dining room where they’ve moved the TV room. Hebrew Home is making some changes. It’s a bizarre setup, meant to make better use of their space, but I have to believe they’re still in transition. A TV is mounted to a wall at the end of a room full of tables for eating, and a couple of rows of armchairs like orphans are set up haphazardly in front of it, with no sense that any of it belongs.

“Sit here,” my mom said, but there was no seat for me until I dragged a chair over from a table.

It felt like sitting in an aisle, where someone might step on us.

“Were you upstairs before?” my mom asked, and I nodded because there was nothing else to do. Upstairs? There is no upstairs.

“Is mom there?” she asked.

“No,” I said. “She’s at home.” (I never tell her anymore that having been born 137 years ago, her mother is now dead.)

“She’s home?” she asked, and I assured her, right away, that it was okay.

“She’s not alone,” I said.

“But what about me?” she asked. “She’s supposed to take me home!”

“She will,” I said. “She will.”

In all the fog and confusion, one thing is clear. Sitting in the TV room which is now in the dining room, with no ability to find her own way to the bathroom and no knowledge that she has her own room, she is homeless. Nothing exists for her beyond that chair and occasionally, the deep past.

But her words rarely lead us back there, and when they do we go only so far; her words rarely lead us anywhere anymore. And the one consolation seems to be that she doesn’t know it, at least not most of the time.

How much do I want her to know? It’s a hard question to answer.

About daughter3

My mom has Alzheimer's disease. She's 91 and lives in a nursing home. She has three daughters. I'm her youngest.
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10 Responses to Changes

  1. Susan donlon says:

    I love your writing. I’ve become a friend of your mom through your writing and i thank you for that.

  2. Nancy says:

    Beth, your mom has taken a huge step down. Hope you are ok. Nancy

  3. She raised a wonderful daughter who has such integrity….who stays with her…and doesn’t give up….even through the pain… the inevitable times of impatience… and the increasingly more numerous heart-wrenching moments….you haven’t given up on her. Bless your heart. You write so vividly and with such realism….yes…a wonderful daughter indeed.

  4. curvyroads says:

    Oh Beth, my heart breaks for you. I have to say that having experienced both states with my mom, I much preferred when she was happy, and seemed unaware of her loss. I’m sorry your Mom is still able to take you back to those painful childhood feelings. My mom did too, but that’s been many years now. We will be scattering Mom’s ashes at Thanksgiving. Hugs to you. ♥️

    • daughter3 says:

      Thank you so much, Lynne. I think I also prefer when she’s happy, even if she is out of it, but sometimes it’s very hard to see her slip away. I hope your Thanksgiving brings you nice memories of your mom. xo

  5. Ellie says:

    Beth, I don’t remember how I stumbled on your blog but I so appreciate your writing. You write with such love, humor, and honesty. I’m sending love to both you and your mom. You’re a good daughter. I only hope I have your patience when my time comes with my mother.

    • daughter3 says:

      Thank you so much, Ellie. I really appreciate that you are reading the blog. Writing it has helped me enormously in managing my emotions around this difficult situation. I hope your own situation with your mother is as easy as possible. It sounds like you both are going through something similar?

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