Tuesday, June 26, 2007

This should bring us all up to speed. Well, not quite.

So yesterday's post ended with my emotional reaction to being home. Tonight, I'm going to pick up on some of the highlights of the last two months as it concerns my mom and AD. It even feels weird to type that, my mom and Alzheimer's disease, because they're still not really sure that's the problem. Just a few minutes ago, I was standing at the kitchen counter where medical reports and doctors' evaluations were scattered all over. Mom and Brian were talking earlier tonight about the upcoming appointment with a doctor from the state regarding Mom's disability. A year has passed since she last sat before one of the state's doctors, and on Monday it's time for her disability status to be reassessed. But the thing is, all the reports I read stated that while AD is likely, there are so many other factors that a solid diagnosis is impossible. But I suppose for now, that's how the specialists are treating it so that's how I should handle it. Anyway...

Role reversal

One of the biggest things I have noticed while I have been home is how much I have switched roles with Mom. Here I am, the 21 year-old daughter, reminding the 45 year-old mother that she needs to eat lunch, and no, crackers don't count as a meal. She would probably never eat if not for Brian and I staying on her about it. And then there's time management...Mom now loses track of time very easily. Once she begins doing a task or an activity, three hours could go by while she's thinking it has only been fifteen minutes. Or maybe she wants to clean the house or get some other chores done - but it's too overwhelming for her to begin. So we make lists now. If Mom knows what she wants to accomplish in a day, then we sit down in the morning and write down everything she wants to do in the most logical order for her to do it, and I remind her to stick to the list.

I have learned to watch the subtleties of Mom's facial expressions, gestures, and physical habits to monitor how she's feeling. I can tell when it's time for me to take over puppy duty and keep Mocha from turning Mom into a neurotic mess. I can tell when she thinks she said something stupid, whether she really did or not. I can see when she's not telling me the truth when I ask how she's feeling. I know how to spot it when her mind starts wandering away, into "the land of alzies", as I overheard her say. I have also learned the best way to handle that particular situation. I used to ask her what she was thinking about, but I realized that only upset her because she can't really pinpoint what's on her mind. Instead of asking if she's okay or what she's thinking about, I now think of a question to ask her to get her talking about something ordinary. What did you think of that TV show we watched last night? Can you believe how much Mocha is growing? Have you seen the little girls from next door lately? Questions like these redirect her thoughts without making her feel like something is wrong with her for falling into a daze again. Speaking of questions, I have also realized that choice questions are much better than open-ended questions when Mom needs to make a decision. Instead of, "what do you want for lunch?" I ask, "do you want a turkey sandwich or some leftovers for lunch?" Open-ended questions requiring a decision are stressful for Mom, but giving her choices makes her feel more in control. Little things like this help her keep her dignity...at least, I hope so.

Sometimes I feel like I have a new role at home: instead of daughter, I am the mood-lightener. When Mom's having a bad day and Brian's stressed from work, I provide enough comic relief to get us through dinner with a smile. When Mom gets too hard on herself and engages in self-deprecation, I make cracks about the stupid thing I did or said recently to put things in perspective. For better or worse, I constantly feel the responsibility to keep things from being too serious or downcast. (Like anyone would ever guess that after reading this blog...I guess I've got to get the negative out sometime!).

The cold, hard truth

Some symptoms are very slippery creatures. It's hard to measure certain manifestations because they vary day by day and could depend on any number of outside factors. The cold, hard truth, however, is that Mom got lost on the way to church last week, and that is a soberingly clear indication that things are getting worse. And as much as I should probably process what I think about that right now, I can't. That's right, I'm going to cut this blog short because it's late, I'm tired, and I don't feel like dealing with it right now. Unhealthy? Maybe. But I'm not ready yet. Putting emotions into words gives them more life and power than they have when they're just vague, intangible impressions. Granted, putting emotions into words also helps their owner to sort through them and feel better. But it's one of those it-gets-worse-before-it-gets-better sort of things, so I'm going to tackle that one another day when I've got a bit more energy.

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I'm going to be at a junior high youth camp until Sunday, so if you're counting on a resolution to this cliffhanger tomorrow, you're out of luck. But come Sunday night, if I am still alive after hanging out with a bunch of junior highers and a couple supposed adults who act like junior highers, then maybe I will continue telling the story as it unfolds. I always have been a sucker for telling stories. I welcome your comments and thank you for stopping by.

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