And that day was yesterday. This morning she awakened up early and had the sort of borderline lucid but intense demeanor that usual signals the return of difficult times. Her blood pressure was up again (200/110), moving us back to no Midodrine.
She did all right getting ready and eating breakfast (of course with me feeding her), and seemed to be doing reasonably well when I took her to her Tuesday Morning group. She apparently did very well in her group, tracking and responding (softly) appropriately a couple of times. By the time I came to pick her up, she had started leaning to the side Her eyes were closed and she was not responsive.
In the car I suggested some options for picking up food or eating out. I was very apprehensive about the trying to eat out, but at this point I will do anything to get her to eat. She liked the idea of eating at BoBo’s (the local diner that made the Food Network’s series on Diners, Drive-ins and Dives). I thought about getting take-out, but fries and burger would be cold by the time we got to the house. Mary Ann wanted to go in.
I knew it would be a challenge since her eyes were still closed and she was moving with great difficulty and struggling with communicating. I am now physically exhausted from getting her in and out of BoBo’s and feeding her. Maybe I am also emotionally exhausted.
I got her into the booth, but she was leaning and having trouble sitting up. I had talked with her enough in the car before arriving to be able to order right away, a cheeseburger, fries and a chocolate shake for her. I ordered my usual fish sandwich.
As soon as the food arrived, it was obvious that Mary Ann would not be able to eat it by herself. I moved her over and sat beside her in the booth (BoBo’s is very tiny with people on top of one another). We were there shortly after 11am, so I hoped we would be in and out before the crowd — flawed thinking.
On the positive side, she ate most of the hamburger and shake. However, feeding her was terribly difficult in that setting. Since she could not sit up or hold her head up, I had to hold her up with one arm, using the hand on that arm to hold her head up, while using the other hand to feed her. They had cut the burger into quarters at my request. I am surprised at how physically challenging it was to hold her up that way while feeding her.
The shake was a special challenge. At first, I used a spoon. It is hard to communicate how difficult it is to get something soft and melting into a mouth that is hanging down over the table. Her neck muscles are very strong and stiff, so pulling her head back to keep her mouth accessible takes all the strength I can muster. She does not seem to balk at my pulling her up that way, so I don’t think it hurts her in any way.
After trying to use the spoon on the shake, I decided to wait and let it melt so that she could use the straw. It was too thick for her to pull it through at first. Later, after it melted, she was able to pull it up through the straw. To make that work, I had to hold her head up with one hand (the one on the arm wrapped around her body) and hold the shake in her lap so that the she could get her mouth on the straw. Again, the good news is that she drank most of the shake eventually. I felt pretty wimpy to be exhausted and sore from feeding Mary Ann lunch, but I guess I will have to accept that I am not as young as i used to be.
When we got to the house after BoBo’s, she was beginning to hallucinate a little (seeing a tube of something on the floor, there was nothing there). After a trip to the bathroom, she went right to bed (about 12:45pm).
I am disappointed that it is appearing that this time we are getting only a little more than one good day after the last round of a couple of days of hallucinations and a couple of days of sleeping. The last time we got almost three good days before the the troublesome ones returned. Maybe she will be fine after a nap. I guess it is apparent that I am not very hopeful about that.
The problem eating at BoBo’s today has the potential of having some lasting fallout. There is now vividly ingrained in my psyche a disincentive to going out to eat. I will need to be confident that she will not have such a difficult time and need so much help before risking eating in a restaurant. I realize that this experience needs not to steal from us the freedom to go out. Those feelings will, however, play into every decsion about whether or not to go out from now on.
She slept with only a commode break or two until 6pm when I got her some supper. She allowed me to feed her, so she got a reasonable amount of food. The hallucinations were not terribly strong during that time. She sat in her chair for a few minutes after supper, and then headed in to lie down again.
She has the television on and has been restless for the last three hours. I am at a loss to predict how things will go tonight and tomorrow. Patterns just don’t ever stick with this disease.
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