I've come to know the signs. My mother's illness progresses by increments. She's been free-falling over the past 10 days, losing ground fast. Of course, her doctor was away on vacation (must be because he's on duty 7/7-24/24 just like I am). I had emailed him to ask that he consider adding Ebixa to her treatment (Namenda in Europe, or Mementine in the US) and he replied the day he was leaving saying he did not manage his patients by email. When I try reaching him by phone, I never know when he'll call back. It can take up to a week before he does. Imagine having to sit glued to the phone so that you don't end up with a message on your voice-mail. Totally frustrating.
Since I did not know the name of the medication in Canada, I gave him both the European and American names. He said he did not know of the medication! Took me all of 3 minutes to find the Canadian name with Google (I should have thought of it earlier). In essence, he told me he would research it when he came back from his holiday (August 10) and we would discuss it in September when he saw Mum. A two-month lapse of time.
Mother was so confused at the beginning of last week that I called my own doctor (she works at the same university clinic as Mum's doctor. In fact, she was the director of the training program when he studied medicine). She had Mum's file on hand when she called me (same day). Turns out Mum was still on the starting dose of Exelon. It had not been increased yet (and wouldn't have been until September!). She doubled the dose (well below the maximum daily level) and nixxed adding the Ebixa for the moment (diplomatically drawing a line in her intervention in Mum's file) but recommended that I call Mum's doctor the day he returned from vacation. She herself would put my message in his message box.
Mum is still losing ground. I notice a definite change in her use of grammar. She won't say "your car", she'll say "the car in the driveway". Or she'll use a very formal style of speech. She also has trouble walking. Her pace is unnaturally slow. She still is insecure about everything she does, asking permission to put a kleenex in her pocket, for example.
On Thursday, she had her first episode of intestinal incontinence. I found her cleaning up the floor. I helped her out, got her to the bathtub and washed. Once she was all changed, we went out on the veranda. My brother had arrived and we were sitting on the veranda telling him that Mum had been ill when she gagged. Sounds funny to say, but it was a Godsend that he was there. He went to get the bleach so I could disinfect the floor after I'd finished taking care of Mum and he promptly disappeared in the garden to mow the lawn. I got Mum washed and changed again. We came back out on the veranda and she gagged a second time. I changed her again, and put her to bed to take a nap. I finished cleaning up and got ready to go out to the bank to pay some bills, asking my brother to check on Mum and bring her a bit of ice cream since she had lost all her breakfast when she was ill.
If I had told him about the incident, he would not have realized. Nothing like seeing to believe. So when I mentioned that I needed to get a handheld shower head for the bathroom he volunteered to find one and install it. And since the Friday afternoon caregiver had called in earlier in the day saying she would not be there the next day because she had pneumonia, he even agreed to pick Mum up early to bring her to his house for her birthday dinner. A blessing, because I had planned a dentist appointment for myself in the afternoon.
I had reluctantly called the caretaker's boss earlier in the day to ask that he make sure that she was aware that she was not to show up for work if she had a cold or flu, as she had promised me she would do before. I felt terrible doing this, but I had no choice. We are, after all, in a pandemic and Mum is vulnerable. He answered me that his workers had instructions to stay home when they were ill. I said to him that in all respects, she was excellent except for that particular point and that if she formally agreed to respect that one condition, she was more than welcome to come back. I hope when she comes back from her sick leave, that we can iron things out.
The "accidents" might have been caused by the increase in her medication, or they might have been caused, as I suspect, by the sheer disgust she felt at what had happened. In any case, she has not had any more stomach upsets since.
I find that Mum functions relatively well in social settings. She was fine during her birthday party although she told me the next day that she did not understand what people were saying. When her grandson called on Sunday, she told me when she hung up the phone that she did not even know she had a grandson.
We spent a quiet Sunday. I prepared her breakfast and the weather was nice enough to eat on the veranda. I put everything on a plate that she particularly liked and brought it out to her. She looked at it and made a face. I went inside and just sobbed. I'm discovering that when you take care of an Alzheimer patient, your ego has no place in the equation. Once I'd calmed myself, I went out again and the breakfast had been eaten.
So the learning continues, and the observation of signs and symptoms. I guess that is what is the most tiring about the experience. That and the pain to see a loved one so vulnerable.
The bee is stinging.
