I am not completely sure why. Some things are harder to accept than others. There is one visual cue that removes all my ability to keep things in perspective. It takes me right up to the edge of my ability to cope, and then pushes me over.
There she was, half way across the bathroom, walking with her pants around her ankles. I had stepped out for only moments to give her some privacy. On the way out, I asked her to please remember to push the button when she was done and reminded her not to get up until I arrived to help her get up. She did neither.
That visual cue seems to release my deepest fears that the next fall will be the last one. It surfaces every feeling of frustration that comes when her choices seem to fight against the very help I am trying to provide. That visual cue pushes me over the outer edge the confidence that I can care for her here at the house until the end.
I got her dressed, put her on the bed, and had to leave the room for five or ten minutes to gather my composure and try to regain perspective. I wonder if part of my reaction is a safety valve blowing off steam to keep the boiler from exploding. I wonder if it isn’t a grieving process going on that I ignore until something like that visual cue shatters my illusion of control. I wonder if part of it is my refusal to admit to myself just how hard this is.
Yesterday morning when I went outside to clear the drive and sidewalk of snow for the Volunteer, she tried to get up from her chair, fell and took with her the table in front of her, knocked the computer monitor to the floor along with a cup with some juice in it and a number of other things on the two tables around her. She was lying in a heap among all of it. Gratefully, as always, she was not hurt at all. I was upset that I couldn’t so much as go outside to shovel the sidewalk without her getting up, creating the vulnerability for a fall. Then I felt responsible. While she couldn’t remember why she got up, I had not gotten her a new box of Kleenex, I had not gotten her fresh water, I had not taken the audio receiver with me outside so that I could hear the electronic doorbell, which she would not have pushed anyway. I realized again how hard it is to anticipate every impulse need and provide for it so that there will be no need to get up. It is hard to anticipate and cover every impulse need of another person — one who cannot tell you those needs in words.
She has been having a difficult time keeping things clear the last couple of days. There are flashes of lucidity, but most of the time, it the hallucinations have continued, verbal communication has been virtually gone, and there have been times of great confusion. At supper tonight, after working on the baked potato on her plate for a long time, mostly with her fingers, I asked if she saw the meat. She said no. A large piece of meatloaf was there on the plate right next to the potato she had been working on. She has often been in eyes closed mode. She will be acting in every other respect as if she is doing things normally, except that her eyes are slammed shut tightly. Often when that happens and I ask her to open her eyes, she will answer that she can’t. I have learned how to walk her from one place to another when her eyes won’t open.
I just came back from the bedroom. Mary Ann had gotten up on the side of the bed. She was trying to pick up needles that were not there. As we were sitting there, a couple of times she told someone to stop pulling on the quilt hanging on the wall a few feet away. She asked we how soon we would be getting out of here. Then she asked how we were going to get all the furniture back. I asked if she was thinking that we were in a different place from our home and that the furniture had been moved here. She said yes. Like Capgras Syndrome, this is a Delusional misidentification syndrome.
I just went back again. This time she asked me to take the girls out of the bedroom. When I asked if they were our Granddaughters, she said no.
At the same time, earlier today when I mentioned the library, she suggested that we eat lunch there. Since we couldn’t find a parking place, we at at Bobo’s Drive-in. At the library, she managed to pick out two books from the large print section. We had sundaes at G’s after the library. When we got home she ended up wanting a nap. After an hour and a half, after taking medicine and using the bathroom, I took her out to watch television. She got up and headed back to the bedroom to nap some more.I had to wake her up for supper.
Back again. She is just having a terrible time accepting that it is night and time to be in bed. She wanted to get dressed this time. It is about 12:15am at the moment.
I have just been with her a few more times. The last time included a snack and a paper towel to wipe up something that was not there. It is about 1am now. I am wondering how much of the night will be spent with the delusions and hallucinations. Last night we were up quite a number of times. There has been very little sleeping in happening in the last week or so. The interrupted sleep is not helping the coping skills, nor is it helping the delusions and hallucinations.
I am going to edit this now and get to bed in hopes that my presence will help. There is no good reason to hope it will help, but I am too tired to stay up any longer. I guess interrupted sleep is better than no sleep.
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March 15, 2016 at 12:04 pm
I appreciate this feeling more than you can imagine. I feel so alone most of the time, as my daughter who is 19 years old and has a brain lesion in her frontal lobe and suffers seizures does the very things you describe.
She walks with her eyes closed and does not acknowledge me most of the time. I have searched everywhere for some sort of help and have no idea where to turn. She went from being my best friend and a dance teacher, a soon to be college student to a person that developed psychosis and was hospitalized in one week.. It happened so fast. Please keep posting and thank you for helping me not feel so alone. This happened January of this year, 2016, and I cry, hurt, and am physically and mentally spent. But she is home, Yet it feels so empty here…