I am beginning this post shortly after 2pm today. Mary Ann settled into full sleep last night some time between 12am and 1am. Other than two trips to the commode, she has been sleeping ever since.
Just a few minutes ago she called my name, I went in and got her on the commode. I told her about all the snow, she responded appropriately and clearly. In moments, she was back to being unable to respond. All she could do was make a grunt. I tried to talk her into getting dressed. She was just too non-responsive to manage that.
I managed to get the Exelon patch changed, but she was not interested in taking her meds. I don’t think she could have awakened enough to get the meds swallowed. I reluctantly put her pj pants back on and let her lie back down. She was having trouble continuing to sit erect on the side of the bed.
As always, I am grateful to have gotten a full night’s sleep. While I don’t like losing her presence when she is in the daytime sleeping mode, sometimes she is fairly lucid for a while after she has slept off the last bout with streaming hallucinations.
Sooo close!! Almost made it! At about 2:30pm I decided to get something to eat. After I got something heated and started eating I heard her. By then it was 2:45pm. I asked if she was ready to get up. She said she was. I suggested getting dressed before pills and food but thought better of it when she couldn’t seem to geet her eyes open.
She drank some apple juice (with Miralax) and took her pills — I put them in her mouth and put the straw to her mouth to take with with the juice as is now the norm. I fed her a container of yogurt. Then I started suggesting cereal options or whatever might interest her to eat. I remembered Mary’s jello (green jello, pineapple, cottage cheese and Cool Whip). She wanted that and ate a good-sized serving. It should be helpful since there is protein, calcium, fruit and carbs in it.
Then I joined her at the table and finished my bowl of beef and noodles. She asked where “Dad” was. I think that would be me. When I asked who she was thought I was and she answered “Mom.” At that point, I suspect she had connected better and was just being silly — not sure about that.
Anyway, as soon as we got back to the bedroom to get her dressed — you guessed it. She needed to lie down again for some more napping. That happened a little after 3pm.
Mary Ann got up again at about 6:45pm. There was an odd irrational hope that the fainting issue had just sort of left her. At the same time, I knew it would return eventually. Earlier today I worked on re-writing the fax to the Neurologist and had mention dropping the Midodrine until the fainting returns. I knew it was wishful thinking to expect the fainting to stay away.
Well, it has returned. She fainted twice while in the bathroom, once on the stool and once when I returned her to the transfer chair. She fainted again when she decided to stand up while sitting in front of the television. What an insidious disease this is. Not every person who is diagnosed with Parkinson’s will have to deal with quite this many symptoms in such severity. It is the major heart problem combined with this form of dementia that has produced so many debilitating symptoms.
It was not long before she decided she wanted to go back to bed. She had said she did not want to eat when she got up this time. I asked her again, listing lots of things as we were ready for her to get back into bed. She agreed to go out to the table. Again, she chose Mary’s jello. I fed her a large dish of it.
She is now back in bed. It is 7:15pm, which means she was only up a half hour. I am readying myself mentally for a difficult night. She has slept through days and nights before, but it seems unlikely to me that she will manage to sleep through tonight also. The most I can do to prepare is to get to bed early enough to increase the odds of getting some sleep even if it is a bad night. I got a good night’s sleep last night. That will help.
My day was spent mostly reading posts of those in the online Caregiver Spouses group and the Kansas Birders. I managed to rewrite the fax to the Neurologist and update it. I did get outside to shovel off the deck and a path to the birdfeeders. It was good to get a little exercise and get the birds some food that is accessible in six or so inches of heavy snow. I am often annoyed on days like this that I still manage to procrastinate on many of the tasks on my list of things needing to be done. There is in the back of my mind the likelihood that as soon as I get the preparations made for doing whatever it is, Mary Ann will be up and in need. It is as good a reason as any to put off until tomorrow what could be done today. (Isn’t that how that saying goes?)
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