Tuesday, March 25, 2014

A different kind of work

I'm supposed to be working right now. I took the entire afternoon off to escort my parents to doctors appointments and so I should be working right now to make up for my missed time. I did a little bit of work, but not enough. I'm too distracted.

The reason I took the afternoon off was mainly to go with my mom to her appointment at the Washington University/Barnes Memory Diagnostic Clinic. She's had memory issues for a few years now and it's become evident that she can't manage her own care, and that my dad isn't much help either. "Well, we saw one doctor but he never got back to us so we went to another. He said the brain scan didn't show anything wrong so he told us to see a psychiatrist. The psychiatrist threw a bunch of different medication at her but some of it made her sick and some gave her a headache so we stopped going to him..."

After her second fender bender, when she couldn't tell my sister over the phone where she was, we (my sister and I) decided something had to be done. Katie took the keys away and dealt with the ensuing temper tantrum that comes when a person loses her independence after 60 years. I started asking around for referrals. It took me six months to get her into the Barnes clinic, and today was her first appointment.

We had to visit another doctor first, because she fell and broke her collarbone about five weeks ago. That seems to be healing well. Then we went down to Barnes.

She tends to walk, in a meandering way, about 10 feet behind us. We have to keep stopping to let her catch up, or consciously slow our pace to match hers. She said she was thirsty and we found a water fountain. Three feet from it, she looked at me in confusion. "Right here, Mom. Here's the water fountain." In the bathroom, we exited the stalls together and moved towards the two sinks. She stood next to me, quietly, until I directed her to use the other sink. "Oh! See? Sometimes I just lose track of what I should be doing..."

When we signed her in for her appointment, I handled all the paperwork up to the HIPAA form. The nurse asked her to sign and initial. She took the pen and stared at the paper for a moment. Then her hand jerkily moved the pen in a few scratches before she said, "I can't do it. I can't sign my name." I could feel her panic, and tried to calm her down. "It's okay, Mom. You're fine. I'll sign it for you." The nurse stared, and I took the pen and signed my own name under hers, then dated it and set the pen back down. A few minutes later I had Mom try again, and this time she was able to sign her name. It wasn't the signature I grew up seeing her scrawl across countless school and insurance forms, checks, and birthday cards, but the nurse didn't know that. I knew it, though, and it hurt.

She went through a small battery of tests, and the doctor grilled Dad and I about her daily habits, routines, and memory lapses. Then the doctor asked us to describe a recent event that she could ask Mom about. I've been out of town and evidently Dad's memory is nearly as bad as Mom's, so we had to settle for what we had done today, leading up to the appointment. Then we waited while the doctor asked my mother to describe what we had done today and compared her answers to ours.

We're starting to close in on a diagnosis, and we have a set path to go down now. I thought that this would make me feel better, but it doesn't. In some ways, I feel worse. I worry that this really isn't reversible, that it will only get worse, and that we have much heartache ahead. (Part of me knows this is already true, but the optimist in me refuses to let go of hope.) I worry that it's hereditary, and that my sister and I face the same fate. I worry about what's going to happen to my Dad, both as he cares for her and as he becomes unable to care for her. Mostly, I just feel like crying.

When I dropped them off tonight, all of us spent and tired, my mother hugged me for a long time. She cried, and said I was a blessing. I didn't know how to respond. I don't think this has ever happened. We have had our share of ups and downs, and I've been very careful to keep a certain distance for a long time to avoid being hurt. We have opposite personalities, different priorities, and couldn't be more dissimilar in our outlook on life in general. We have driven each other crazy, and I'd venture to say there's been more times than not that we've thrown up our hands and exclaimed about each other, "I just don't understand her!" But now, none of that seems to matter.

Maybe that's what makes it hurt so much.



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