The neurology clinic

Let’s see, where to begin. I didn’t visit Mom again until Saturday. My husband and I went out of town for about 24 hours, visiting our college town with two friends to see a band and just hang out a bit. Upon our return on Saturday, I stopped at a grocery store to buy Mom a new supply of disposable underwear and some deodorant. I got to her place kind of late, about 4:30, and she was already sitting in the dining room. I put the underwear in her usual dresser drawer and put the deodorant on the bathroom counter, hoping she would see it and remember how to use it. I visited her quickly in the dining room and told her I had put some stuff in her apartment, and then left.

Sunday morning, the receptionist called to say Mom was wandering around the dining room, reporting to the employees in there that she was out of cat food. “Well, she’s not,” I said. I had just delivered an 8-pound bag of cat food to her on Thursday. The receptionist said she would take Mom back to her apartment and show her the bag of food. I thought to myself that I ought to call Mom later and remind her she had a new, big bag of food and there was nothing to worry about. I never did make that call. But I did check my work voice mail about five times, and Mom never called. That suggested to me that she was not worrying anymore. I suppose I could have been wrong about that. I was just completely exhausted on Sunday, and I did very little. Some laundry, some cleaning up in the kitchen. Almost finished a book. Tried not to think about Mom too much.

Today, Monday, we had an appointment scheduled with Mom’s neurologist. We go there every six months, but every other visit is with a nurse practitioner, so we hadn’t seen the doctor in a year. I called Mom in the morning to let her know about the appointment. I hadn’t told her ahead of time because, well, there was really no point. When I called, she said, “Things are bad.” She seemed to be a little irritated with her friends. She said she was out of cat food. I reminded her there was a big bag of food in her room, next to the food bowls. She said, “I have no pee, none at all.” This meant she had no underwear. But I told her she did, in fact, have a drawer full of underpants. I was distressed that she wasn’t aware of that. I told her I’d pick her up after lunch.

When I got there, she was sitting in the lobby with her friends. I went to get a list of her medicines from the nurse, and while I did that, Mom apparently slipped away to the public restroom near the lobby of her facility. While she did that, I ran to her apartment to pick her up a pair of socks. For the first time that I had ever noticed, she was wearing mismatched socks, one black and one white, under her pink Crocs. We stepped outside and it was chilly, and Mom said she wanted a jacket. We went to her apartment to get a jacket and while there, I decided to change her socks. We were getting ready to leave – I was stressed, because we were running late – and Mom said, “I hope pee doesn’t run down my leg while we’re there.” That stopped me in my tracks. I asked her if she had any underwear on and she said, “I don’t know.” I showed her the full drawer, and she said she didn’t know they were there. I gave her a pair to put on, and she almost began slipping them on over her pants. When she took off her pants, I decided they needed to go right into the laundry basket since she had been going commando underneath. I picked out a very similar pair of light blue pants and she put them on instead without any argument.

I couldn’t find parking in the garage near the hospital clinic building so I used the valet service, something I have never done before. At the reception desk in the neurology clinic, the staff member asked for a photo ID and Mom’s insurance cards. I had completely forgotten about the need for these things and I was all aflutter about running late and I said, “I don’t have them. I just don’t have them.” I did have Mom’s driver’s license, though. I can’t recall if I ever reported here that I found it one day in Mom’s purse and tucked it into my own wallet. But the insurance cards are in my jewelry box, for some reason a place I consider safe. Thankfully I didn’t have to pay as a result of missing these cards. Mom’s insurance hasn’t changed in three years so I do wonder why one has to produce these cards at every clinic visit. We waited, and a nurse took Mom back for a blood pressure and weight check. I stayed in the waiting room. A little while later, a research coordinator who knew me said I should probably go back with Mom, as the nurse was reviewing her medicines with her. Well, had I known, I would have gone with her. That conversation wouldn’t have gotten very far. We confirmed the meds and the nurse left. And then we waited, and waited, and waited for the doctor. I adore this guy, but he always runs very, very late. I guess specialists in Alzheimer’s are hard to come by, because this clinic is always booked solid for months in advance. Our 12-month appointment with him will take place in July 2010 because he’s already that full next spring. Making him run even later is a new electronic records system that is forcing physicians to enter notes in a computer during patient exams and visits. I have lots of opinions about this, but they’re not really relevant here.

He and I talked while Mom took her mini mental exam and another test of her language, thinking and memory. I have been considering taking Mom off of Aricept in advance of the move to the nursing home, but he encouraged me to keep her on it and even consider adding Namenda, which might help her function. Her mini mental score was 9, out of 30, I think, down from 13 in October. So these meds aren’t exactly slowing her decline, but they help her with routine tasks, as I understand it. I told him I worry about how she will handle the transition to the nursing home. He said many patients do fine with the change, and just accept it. But families have a hard time with it. I can see how this would be the case. He said if she hasn’t developed aggressive and mean behaviors yet, she probably won’t. That is a relief. He sent me away with an order to the assisted living doctor to wean Mom from a strong antipsychotic medicine that he prescribed after the cat died in December when she was agitated and depressed. The neurologist said that drug could exacerbate confusion and unless she has really difficult behaviors, he thinks she’d do better without the drug. I’ll be interested to see how the staff responds to that – I, too, thought this particular drug was prescribed for only a month to get Mom through a rough situation, but the facility doctor kept renewing it. He’s supposed to call the neurologist in three weeks to discuss behavioral issues. I like the idea of these two doctors talking to each other. When Mom returned, the neurologist explained to her that he is taking her off one of her medications. I thought it was interesting that he bothered to tell her, because I think she didn’t really understand what he was saying. But he showed a respect for her by doing this. His whole way of speaking about her during our little interview made clear to me how he hopes for the best for his patients even though their illness leaves so many around them feeling very hopeless. He wants them to do as well as they can for as long as they can, and he said as much. I appreciate that in him. I told him I used to want Mom to be nearly catatonic by the time she entered a nursing home, and though he has heard of that desire among other caregivers, he gently suggested it’s not in Mom’s best interest. And I told him that I agree with him, but that now my focus for Mom is for her to be as happy as she can be, without fear, without anxiety, without sadness. Whatever it takes to get her there, that’s what I want. I have to trust that he and the facility doc will do their best to make that happen, too.

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