I took mom to see a new neurologist on Monday. It was the beginning of a big week of thinking realistically about the future and looking honestly at the past. First things first, I was so happy with the new neurology practice. Everyone was so pleasant, AND patient as I tried to get mom to sit still while I filled out the paperwork. I kept giving her things to count to occupy her long enough for me to think about the patient history questions:
“Mom, count the number of magazines.
“Now count the number of chairs.
“Now count the ceiling tiles.”
After that I told her the doctor was going to ask her some questions and so we practiced her birthday, her name, where she was born. Then we counted some more. THEN I had the brilliant idea to pull out addition flash cards on my iPhone and we did math drills for 15 minutes. Mom and I could kick some First Grade ass I’m telling you.
The new doctor was as patient and caring as the front office staff. She took the time to sit with me and ask lots of patient history questions. Then she did several memory tests for cognition, speech, reading, writing, telling time, and counting. Mom aced counting. 🙂 The other tests, well, hit and miss. Reading, writing and simple conversation were good. But in reality, conversations now with mom include a lot of parroting of what you say:
“Mom, did you eat breakfast?”
“Yes, Matt, I ate breakfast.”
“Mom, do you have to go to the bathroom.”
“Yes, Matt, I have to go to the bathroom.”
“Mom, are you a Russian spy.”
“Yes, Matt, I am a Russian spy.”
And telling time was tough. The doctor asked her to draw a clock and she drew a big circle, and started numbering it. She got to 12 by the time she was halfway around the circle so after a brief pause she just kept going to 26. Then the doctor asked her to draw “Ten minutes after 11” on the clock. She put a dot in the middle and drew a long line pointing to 11. Now, with 11 currently located where 5 should be, even someone with all their faculties would find this an SAT worthy logic problem. She stared at it so long I though she was just silently giving up. Then she wrote in words along the one clock hand she’d drawn, “Ten minutes after eleven.” Done, and handed the clipboard back to the doctor.
The doctor and I chatted about what she is and isn’t able to do now. Then she gave me her diagnosis. Mom’s dementia had progressed to the moderate stage, and it was likely Alzheimer’s. Moderate stage means the middle of the disease. Cognition is shrinking. Her vocabulary is shrinking. She’s forgetting people–though luckily not me or my brother yet. She’s forgetting things–like which car is mine in the parking lot, so you can’t take your eye off of her or a stranger will get a surprise passenger.
It’s a funny thing about this disease. I know my mom isn’t going to get better, but I try not to see that she is getting worse. I think of reasons why she would be confused…well, I did just get a new car…well, she isn’t sleeping well anymore…well, it’s a full moon (that’s my personal favorite.) But really she’s getting worse. Slowly, she’s forgetting more, she can’t do things she used to do, and she’s getting sicker.
So, I’ve been thinking about this all week. We are in a new stage, a really urgent stage, because so much of my mom is already gone. Certainly the person I knew isn’t there anymore. And sometimes I’m scared I will forget some of that wonderful person that used to be there. Enter blog purpose number one…when the funny, embarrassing, sweet, scary, ridiculous memories of my mom come into my head, write them down and remember them.
And even though that person is gone, there is still someone really wonderful still here. My mom is still so sweet and funny and silly and passionate and still so full of life. Enter blog purpose two…document the person she is and chronicle the ups and downs as we ride this middle stage out.
Here we go…
Crazy Kathy. It was always just a half-joking nickname but always, always said with love. This is a delightful thing you are doing, Matt. She would love this.