Missing Pieces

This week I joined Weight Watchers. I have 10 pounds of sadness, sweet creamy coffee and gluten-free baked goods to get rid of. My occasional running and eating everything I want when the mood hits me is certainly not working. Do I need a therapist more than the WW app? Probably. But trying to lose the weight gives me a sense of control that I may or may not really have. For now I’ll take the illusion.

I happened to start my weight loss program on the same day I got a message from the facility where my mom currently lives. For reasons unknown, Mom has started to pull her hair out…by the fistfuls (trichotillomania). And when I went to visit Mom yesterday, I realized they were not exaggerating. Much of her hair on the left side of her head is gone.

Mom’s hair has been thinning over the past few years due to medication, so honestly, it didn’t look as bad as I had feared. I was so worried, though, that I brought both my son and husband with me to visit. I knew I couldn’t do this on my own. I’m really good at faking happiness and cheer, but sometimes I need back-up, you know? It turned out to be a great visit. We all laughed, they ate donuts and drank coffee, and I just kept my smile on. I didn’t even cry when we got back to the car, or even that night. I was ok.

But then when I told my sister about Mom, she said one little thing that just broke me. She said how sad it was that Mom had to end up this way. And she’s right. It IS fucking sad and horribly depressing to see a bright, energetic woman end up with half of her hair, scratches on her face from her own making, and only a handful of memories left.  I couldn’t sleep last night. I kept thinking about Mom and when I finally did sleep, I was restless and I kept hearing things that really weren’t there.

Today I hung out with my dad so my stepmom could go to church. Dad is on oxygen 24/7 now and can get confused easily, so he needs to have someone with him all the time.  I always have a good time with my dad, and he hasn’t lost so much memory yet that we can’t have a decent conversation. He typically asks how my mom is doing, but today I told him before he could even ask. I started to cry when I told him about her hair. He cried, too, and we both agreed that Alzheimer’s was a horrible fucking disease. Later, when my stepmom arrived, she asked about Mom and I cried again.  Maybe I’m really not ok.

puzzle

What I finally realized is that the missing hair is like a physical manifestation of Mom’s absent mind. Each week when I visit her, something else is missing–another memory or something is no longer understood. Last week it was my brother’s height. He was always the tallest in the family but Mom kept asking if I was the tallest. I guess I am now, but I won’t admit to that. I kept saying, “No, Phil was the tallest.” And this week she had stories to tell me about who colored pictures in her book or on her wall, and she said both of her grandchildren colored them. I know they didn’t, but in her mind they’ve been there to visit and that made her happy. If Mom can remain in these happy places in her mind, maybe she won’t keep scratching her face or pulling her hair? I really don’t know.  But I have to have hope that this trichotillomania will come to an end, either through medication or good thoughts or a bit of both. I have to hope because there is nothing else.

I’m watching my mother disappear, and I have to wonder, which of us will disappear first? Will I no longer recognize the woman I’ve known to be my mom first, or will she no longer recognize me?

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I tried…

…but did I try hard enough? Last night, as I sat with my mom, as we laughed and cried at “This is Us,” I rode an emotional roller coaster between guilt and relief at what today would bring.

This past week, Mom’s memory has been the best it’s been in over 2 months. Physically it hasn’t been great, but mentally things were better. Yet I know that it won’t always be that way. I know that a residential care facility and the folks that work there will care for her the way she should be. She won’t be alone for 6 hours a day like she has been while I’m at work. I know she’ll eat lunch and it will be good for her (and hopefully yummy) and I won’t have to inspect the trash or fridge to see if she ate what I put out for her or if she ate a half loaf of bread instead.

It also means I won’t have to change her sheets when she had an accident. I won’t have to clean the bathroom floor or the toilet or the bathroom counter nearly every single day like I’ve had to for two months. I won’t have to sneak into her room and steal her dirty clothes so I can clean them. Or ask her multiple times to please change her clothes or to take a shower.

But it also means she won’t be here as we eat our dinner around the table and talk about our day. Or laugh at silly things we find on television. Or fold all of our clean laundry (this was one of her favorite things to do).

For the past few weeks, various medical professionals as well as my friends and family have all said, “It’s ok. You’re doing the right thing for both your mom AND for you.” But this afternoon it did not feel like that at all.

My sister and I drove my mom to her new home, and it really is a lovely place. It’s not assisted living or a nursing home, but a residential care facility which is kind of in-between the two. It’s a very homey place, doesn’t smell like a nursing home or a hospital. Mom’s roommate is fantastic and she loves to watch tv as much as Mom does.

But as soon as we got there, Mom was angry and upset. After we sat in her room for a minute, I had to get up and leave because I was starting to cry and I wanted to find the director. Mom argued with my sister about why she had to be there, saying that yes she could take care of herself, but thankfully, my wise sister, distracted Mom with photos and questions about our grandfather. By the time I got back, Mom was smiling and was willing to let me put her clothes in the dresser. Later she went to lunch in the dining room with everyone else (and my sister) while I filled out paperwork.

We visited for a while longer and I encouraged Mom to walk about in the rest of the building, check out the two large areas to sit and read in or watch television. She sat in her recliner before we left and settled in to watch tv with her roommate. Once my sister and I got to the car, I sobbed. It felt truly awful to leave Mom. I felt like I abandoned her and let her down. I’ve felt guilty just thinking about when this day would come, and now that it’s here, that guilt sits heavy in my stomach, my chest and my head.

guilt-and-grief

I KNOW that Mom needed more care than I could give her. I KNOW that my son needs me and has needed me the past few months when I put my mother’s needs before his. I KNOW that my mental health needed this to happen.

So why does it feel wrong? Why does my stomach still hurt and my chest feel tight? Why do I feel so guilty when it’s the right thing to do?