I need to find some synonym for “confused.” I wonder how many of the posts I have written over this almost year now of writing that have the phrase “hopelessly confused” in them. Again today I am hopelessly confused.
Mary Ann settled last night after a few signs of restlessness. Oddly, in one of those restless moments, I came in because she had been moving around in bed, seeming to be ready to hop up (as seen on the monitor while I was at the computer). She asked me something about where I was going to go. I don’t remember the exact words. I told her I wasn’t going anywhere and asked what brought her to ask that question. She said that she had been thinking (or dreaming) that I was going to divorce her.
I told her that she was not getting rid of me that easily, and that it was not even a remote option. I wondered from where the thought had come. Even in my most frustrating moments, when my words were far from sweet, that was never a word used or even implied. As different as we are in some ways and as many times as we were not pleased with one another in our 44 years of marriage, that was never a realistic option. I make no judgments on those whose circumstances became so difficult that divorce was the best option in a bad situation. Our conflicts and frustrations never reached the level of raising that as an option.
What causes me to be hopelessly confused at the moment is that, after working on the sheet to fax to the Neurologist about changing meds to control the bouts of hyperactivity and streaming hallucinations, Mary Ann has been subdued and sleeping a lot.
After our conversation eliminating divorce as an option, she settled in for the night, and the morning and into the afternoon! She has gotten up seldom to use the commode. She slept until almost 10am (okay with me!). I helped her to the commode and got her dressed. As soon as she was dressed (while we were finishing) she started trying to lie down again. I took her blood pressure (210/120), and then she just lay back down in the bed.
At about 1:15pm, she was moving a bit, so I asked if she wanted to sit up. She half-heartedly agreed that she did. I got her to the bathroom and out to the dining room for pills and yogurt. As soon as she was done with the yogurt, I asked if she wanted cereal or lunch food next. Then I asked if she was still hungry at all. She said that she was tired. She wanted to lie down in bed again.
It is now 2pm and she is resting peacefully.
It is now 3:30pm. I sat her up to take her mid-morning (I know!) pills, take her to the bathroom, change her pad (disposable underwear), and get her jeans on again. I asked if she was hungry. She said no. I asked if she would like to come out into the living room and watch some television. She said she wanted to go back to bed. That is where she is.
It is now 8:30pm. I got Mary Ann up (she was reluctant) at about 5:30pm. She was not hungry, but after sitting up for a while, she agreed to eat some supper. I cooked and sliced up a bratwurst for her. She likes them and they are easy to eat in that form. She managed to spear them with the fork and get them to her mouth on her own. She had a chip or two and some Pepsi. Then she ate a dish of ice cream from the freezer with very minimal help from me. She had some fairly normal intestinal activity. She then sat in the chair in front of the television, but after a short time of sitting up, began leaning forward on her lap again. At about 8pm she decided it was time to go to bed. I cannot imagine that she will sleep the night after sleeping most of two full days and nights.
I now have no idea what I would write on the sheet to fax to the Neurologist. What I wrote Wednesday does not reflect what is going on now. If meds are changed to calm her down, she hardly needs that. If meds are changed to perk her up, the wild hallucinations and hyperactivity might return with a vengeance.
By the way, I expect the hallucinations and hyperactivity to cycle back in at some point. I dread that time.
She hasn’t been fainting but seems likely to do so again judging from the past.
Everything she is experiencing, including the vacillations from one extreme to the other are talked about frequently by those in the online group of Lewy Body Disease Spouses. That does not prove that Mary Ann’s current vacillations don’t have to do with medications, but it does suggest that all this is just part of the deal. It also helps take the pressure off, suggesting that what I do or do not do as problems arise probably does not have all that much power to change things either for the better or for the worse. This is outside my power to fix.
For someone who has been a planner who struggles with changing quickly from workable patterns, this is madness on steroids! At the moment, as long as I accept that things may change in a heartbeat, Mary Ann sleeping a lot and remaining fairly subdued when awake makes caregiving doable. I lament the loss of having more time that she is alert and communicative, but I am grateful for being able to continue to care for her here without going crazy. If/when the hyperactivity and streaming hallucinations return, it will take about fifteen minutes for me to conclude again that I am in over my head. What a ride!
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The Caregiver Calling 