The same, but not

For quite some time now, when people have asked me how Mom is, I have said that she is roughly the same as she has been for about two years. She can feed herself, walk unaided and she is very talkative, though over time she has definitely lost most actual words. She chatters on and on in nonsense language. I imagine she is telling me stories about what goes on around her, or maybe what she occasionally remembers from her distant past. When I visited her on Wednesday last week, though, there was something new: She was constantly grinding her teeth – but not just pressing her jaws together. She maintained a chewing motion accompanied by a grind with every closure of her mouth. It sounded dreadful, and I worry that this will accelerate the decline of her teeth. Having looked around the web a little bit about this – it’s called “awake bruxism” when it’s done by dementia patients – I see that an estimated 4 percent of Alzheimer’s patients have this symptom.

When I heard her doing it for the first time, I thought it was just related to the immediate situation – that maybe she had some mouth pain. I put my fingers in her mouth and tried to look at her back teeth. This made her laugh, thankfully. She has a reputation for not tolerating any attempts to clean or treat her teeth. I couldn’t see anything dramatic – though I saw the familiar large gold fillings on many of her molars, and that actually gave me hope that decay is delayed in the back of her mouth. I also saw what I thought could be a cavity in one of her lower front teeth, near the gum line. Early on in her illness, Mom had a last appointment with her longtime dentist, and he filled numerous cavities at the gum line. That had been an indication of decline then – Mom had taken good care of her teeth as an adult, but either lost the function or simply had forgotten to brush.

I just don’t want her to hurt. Mom used to be a chronically achy person. She’s not able to articulate that she’s in pain now, but she also doesn’t show signs of distress that might indicate pain. I’m hoping those signals in her brain are all burned out, and that if her mouth should be sore, it just isn’t anymore.

I was at the Alz center for a quarterly care conference. According to the report from staff, Mom does sound about the same. She weighs 184.6 pounds, down 1.8 pounds since April. She eats about 75 to 100 percent of her meals and still gets ice cream and high-calorie cereal with lunch and dinner. Her skin is in good shape – which hasn’t always been the case – and she walks well. She doesn’t participate in activities, but she will occasionally “wiggle” when she hears music. She doesn’t make much sense when she talks, but still has some clear words. She sits alone a lot and naps more frequently. She doesn’t have boyfriends anymore but sometimes hangs out in a group of women. She doesn’t scream in the shower like she used to. “I used to always know when Bonnie was getting a shower,” the activities director said. “But there are no screams anymore.”

I popped into the program area to see Mom before the conference, and found her on a couch, trying to sleep.

Mom snoozing on the couch. I was pleased to see that she was wearing a shirt I recently bought for her at Kohl's.

Mom snoozing on the couch. I was pleased to see that she was wearing a shirt I recently bought for her at Kohl’s.

I sat by her feet and rubbed her calf a little bit, hoping it felt like a mild massage. She opened her eyes and looked at me, holding my stare. I smiled at her but she just gave me the hairy eyeball and closed her eyes again. Within a few minutes, she was twitching, so I knew she must have fallen deeply asleep.

But when I returned to the program area after the conference, Mom was walking around. I joined her and we held hands and continued to walk, with no clear path. She gnashed her teeth over and over. She stopped to dance from time to time, and then wandered into the middle of a bunch of seated residents who were waiting for a visitor to begin his music program. She would stop and dance – wiggle, really, is a good way to describe it – and then move on until she was inclined to wiggle a little bit more. One resident sitting a wheelchair quietly shook her head disapprovingly. I found that both funny and upsetting. Just pausing to look at Mom, I did think she seemed a little more out of it – a little more unpredictable than usual – than she has seemed in the past. The thing is, she was having fun and not being destructive. And of course a resident’s disapproval is probably a fleeting thing.

And so, I think, Mom is experiencing some noticeable decline. It’s not unexpected, of course. It has been surprising to witness her long-term stability. And yet, decline isn’t welcome, either, if only because it opens the possibility of pain, of distress, of difficult behaviors on Mom’s part. I will stay focused on ensuring her mood is good and that she isn’t scared or sad. And then it will be like it’s always been – we’ll just wing it.

6 comments so far

  1. David Hoover on

    I watched with interest the recent story on the Katie Couric show about the power of music on Alzheimer patients. When they put earphones on them, they come alive. Perhaps your mom would respond to earphones the same way? It seems to have magical powers of reversion to past, happy times!

  2. Gemma McLuckie on

    Emily, Once again your thoughtful analysis helps me. I just tried to answer my cousin’s inquiry into my father’s situation. I can’t explain it in a way that makes sense. Yes, he does talk. But he doesn’t carry on a conversation. Yes, he seems to feel a connection to me. But he has lost “Gemma.” Yes, he can walk. But he doesn’t know where he’s going. But he recognizes landmarks when we’re out driving (“on our way home,” he’ll say). This paints a sad picture, but I believe that most of the time he’s not sad. I’m the person who’s sad. He turned to me after one ride recently and said, “This is a perfect day.”

  3. momsbrain on

    Hi, David-I didn’t see that Katie Couric show, but I have seen music have a powerful effect on Mom and others. The Alz center actually has music playing all day long on radios in various public gathering spots, as well as visiting musicians who sing, play piano, play guitar, etc., with the patients. I feel skeptical about Mom’s ability to tolerate earphones – she doesn’t even like the feeling of a gust of wind, sadly.

  4. momsbrain on

    Gemma-It is hard to describe what is really going on with patients, partly because we don’t always know, partly because the patient’s response to you/me may be different with others. Also, the talking without saying anything – one really has to hear it to fully grasp what it’s like. Oddly, Mom still says ‘Emily’ sometimes, usually when I’m not around. But it’s just a word now that was familiar as Mom got sicker and sicker; I believe it has no meaning to her. I know this time in your dad’s life makes you sad. I hope it is a comfort to you that he isn’t sad. That Mom is in a good mood is helpful to me, and has become my primary concern.

  5. dementedgirl on

    I have never heard of this symptom of dementia at all, and am sorry to hear you are going through it…

    It’s all something of a slow decline with dementia, that on a day-to-day basis you barely notice it, until something like this crops up out of the blue…

    Thinking of you,

    DG x

  6. momsbrain on

    Hi, DementedGirl: Thanks so much for your comment. Mom’s decline has definitely been slow – which is why I’m both surprised, but then again not, by an observable change.

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