Archive for May, 2015|Monthly archive page

The weight

For so long, I had no change to report about Mom. She walked, talked and fed herself and maintained those functions without much obvious decline for quite some time. I wondered how long it could possibly last. Sometimes I lamented the fact that her illness was prolonged by this stability. But she was predictable, for a very long time. And I could have pleasant visits with her because she would laugh, she could enjoy a root beer or a Frappuccino, we could take a walk and hold hands, and she could speak the occasional meaningful phrase. She noticed when I arrived and she could still pucker up and give me a kiss when I said goodbye.

Now, those functions are basically gone. I’m told she can walk once people help her stand up. But I can’t lift her out of a chair by myself because she does nothing to assist the effort. She doesn’t vocalize much at all, and almost 100 percent of what she says is nonsense syllables. I can’t even guess what the sounds mean, but I try to maintain a steady stream of affirmative responses. She might occasionally break into a smile. She very willingly eats whatever she is fed. But she remains impassive. Eating doesn’t seem to give her any pleasure, as it has in the past. Even pie doesn’t produce much enthusiasm.

I once engaged in a comment thread on a New York Times blog post about whether there could be joy with Alzheimer’s. Sure there can, I said. At that time, Mom could be a source of joy for me, and I hoped my attention gave her some joy. She hadn’t known me for a long time, but she liked me. She saw me as a pal. She might think I’m a pal now, but she can’t show it. I’m afraid that any joy associated with visiting with Mom is gone, for her because she’s a blank slate and for me – because she’s a blank slate. This reality is weighing on me.

I am pretty confident that I’ll get used to this, especially if Mom’s decline continues at such a slow pace. It will become the new normal. That will be helpful because right now, I don’t like myself very much. My outlook on so many things – Mom, employment, housework, yard work, summer heat, my dog’s health, my own aging, travel, exercise, free time, finances – you name it – is grimmer than usual. That’s saying something. I’d like to snap out of it.

Melancholy on Mother’s Day

I’m used to hating Mother’s Day at this point. The marketing was the first thing to get to me when Mom was no longer a candidate for a gift – because she couldn’t understand the concept of a gift anymore. The marketing gets more obscene every year so I just try to dismiss it. I don’t know why this year has been sadder than usual for me. But I haven’t enjoyed the Mother’s Day season and I’m glad today marks its end. (I acknowledge that many people enjoy this holiday and I am hardly the only person who finds it difficult. I also acknowledge I am a big downer. That’s why I waited until bedtime to post.)

It being Sunday, I fed Mom her lunch. This has become a routine, though it is still somewhat new. I was late and an aide was feeding Mom when I arrived but she was happy to be able to tend to something else. Mom dutifully accepted bites of pork, cooked carrots, hot cereal and fruit cocktail. I dribbled water down her chin only once. I noticed that she would pick her teeth with her finger whenever the meat got stuck. She also scratched her ear. She barely acknowledged my presence, and she made only a few minor reaches toward her tray as if there were still some muscle memory there about what it means to be eating. But she knew how to remedy that sensation of having something stuck in her teeth. And she knows how to scratch an itch. Her cough reflex is in good shape, too. She had a minor choking response to a bite of fruit cocktail and she was able to cough her way out of it. I was watching pretty intently, wondering if I was going to have to help her. She ended the coughing with a very big sneeze. Taking all this in, I couldn’t help thinking that her physical decline is distressing, but its unpredictability is also sort of fascinating. I just don’t understand how some abilities still exist while others don’t. But nobody understands these things, which is why Alzheimer’s is such a disaster of a disease.

A nurse who knows me came by and tried to pep Mom up, patting her back and nudging her shoulders. She asked Mom what my name is, and told her repeatedly to wake up and have a visit with me. Mom did show some signs of life – she laughed a few times and spoke a few nonsense phrases. I don’t know if she ever says Emily anymore. She barely opened her eyes. I appreciated the nurse’s effort. But I don’t like the idea of having to convince Mom to be lively. I did move my chair to her other side because her focus seemed to be directed that way. I talked to her a lot, telling her about my brother and sister and nieces and how they’d all like to be able to talk to her on Mother’s Day. And I mentioned that Patrick ran a marathon. Shortly after the nurse walked away, I said, “Hey, Mom, are you in there?” And she said, “Yeah.” So interesting. And a little bit later, she said, “I like you.” I was getting ready to leave, and I said, “I like you, too. I love you.” She was starting to drift off.

I couldn't get Mom to open her eyes. She did just once while I was there - to scratch an itch on her nose.

I couldn’t get Mom to open her eyes. She did just once while I was there – to scratch an itch on her nose.

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We did hold hands from time to time. And sometimes she gave my hand a little squeeze.

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And then, she dozed off. This is part of the routine.

It was a teary week leading up to this day. Many of my friends have lost their mothers, and Facebook was full of posts about daughters and sons missing moms who have passed. I can relate. And not. The toughest thing was a conversation with a friend over breakfast on Saturday. Her relationship with her mom is complicated. But she talked about her mom’s insights into some professional relationships my friend has, and it struck me how much attention her mother is paying to her life. She knew names, events, emotions, all kinds of things. My mom was an intellectual. She liked a good conversation. I’ve missed out on 10 years of her listening, and asking questions, and offering support. And just knowing me.