One night and day like this are about all I am up to. Last night the hallucinations fired up. When I say that we got less than half a night’s sleep, I mean that if the night were to be sliced down the middle, lengthwise, there was sleep that totaled less than half the available time. In other words, there was about twenty minutes out of every hour that may have included some sleep, at least for me. As I write that, I suspect that I am exaggerating some. I doubt there there was twenty minutes in any hour that was not spent trying to explain away hallucinations and convince her to lie down and go to sleep.
Once after I had pointed to her quilt on the wall and the family pictures on two other walls in the bedroom. She stared me in the face and said in a very belligerent tone: “All right, now just take me home!” At one point she was crying uncontrollably during a dream. Almost immediately after I hit the publish button on last night’s post, she got up and then fell down in the corner of the bedroom. When I got there she was talking utter gibberish in a loud voice like the sounds she makes sometimes when she is starting to faint. They are awful sounds. They may have been some sort of wailing that was part of a dream that was going on when she fell. I was afraid she had had a stroke, but when I got her up, she seemed to have awakened from whatever form of dream she was having. She was still not at all lucid.
After having clear and healthy looking urine all day, up until the time she went to bed, she started showing some blood in her urine. I phoned Hospice, grateful to have someone to call. The Hospice Nurse said she would bring over a kit to gather urine so that she could be tested for a urinary tract infection [UTI]. We agreed that it would be okay to wait until morning to bring it over.
After an entire night of getting up and down again and again, trying to get her to settle, she got up very early. I had set the alarm early so that I could get a shower in before the nurse came. Mary Ann was up before the alarm went off. She was in hallucination streaming mode. I simply cannot endure that for very long. She hops up immediately after sitting down, needing to go somewhere, not always sure where. She was in fainting mode, so each time she insisted on getting up and walking somewhere, she ended up on the floor. I was with her each time, so I had to let her down to the floor, sometimes dead weight, so that she would not hurt herself. Then I got the transfer chair beside her, pulled her up on to her feet and back into the chair. As soon as I moved her back to her spot, she would pop up and the procedure would start again. I could not begin to count how many times that happened.
I did manage to get her fed, no small task since she was hallucinating and paying attention or talking to whatever or whomever she was seeing. I am utterly helpless to do anything about problems created by people or objects that have no corporeal presence. They just don’t exist outside of Mary Ann’s plaque laden brain cells. Whether or not they are real, they are so to Mary Ann. They elicit the full range of feeling and frustration and fear that they would if they actually were real.
I had to sit two or three feet away from her every minute, or she would get up and move someplace where she could be hurt. I could not so much as get in a fifteen minute shower. The Hospice Nurse had to be late, since a client had died and she had been up with them all night. I followed Mary Ann around, picking her up again and again for two or three hours, until just minutes before Nurse Emily arrived when Mary Ann simply crashed and had to go back to bed.
Nurse Emily dropped off the urine gathering kit for me to use later, but she was also willing to stay for fifteen minutes extra so that I could take a shower. During that time Volunteer Edie came to stay with Mary Ann. As always Edie brought lunch. This time it was a favorite of both Mary Ann and me, a Greek style meatball and veggie soup. Mary Ann slept about three hours, beginning before Nurse Emily and Volunteer Edie arrived and ending just after Edie left.
We ate lunch, and afterward, Mary Ann started the same pattern as the one that had almost driven me crazy (short drive) before her nap. A number of times when she popped up in the afternoon, she was irritated that I didn’t get her into the car to go to the Evening Service at Church. The service is at 6pm (ten minutes away from our house) and she started popping up around 2:30pm.
The afternoon pop-ups included four or five of them beginning a trek to the bathroom, where the fainting and intestinal production ending up in the wrong place happened a number of times.
We did manage to get to the Evening Service, but I was wasted and worn out, and Mary Ann was not able to participate much in the service. There is enough structure to the service, that we could at least make it through the service. Church and supper did not change the pattern. We ate supper, Mary Ann sticking her spoon in the Pepsi and her napkin in the soup, often seeming to try to eat the napkin with the spoon. Sleepless nights wreak havoc on her dementia.
I won’t deny that I had been hoping all afternoon and evening that she would go to sleep again. She did not. Now finally she is in bed. She has been continuing to pop up and down, sometimes thinking it is morning. I have had to talk her out of getting up and dressed. I don’t know that I have another night like the last one in me. I guess I don’t have a choice.
What I have written may make no sense, I am so wasted that my eyes keep shutting. I need to get to bed. (Too tired to edit. It goes out errors and all.) [I am adding this sentence to indicate that I have now edited this post, and Mary Ann and I did get some sleep last night.]
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April 19, 2010 at 8:49 am
Pastor Pete,
I read your posts daily and I have to tell you that you are truly an amazing person. Your love for Mary Ann and the Lord couldn’t be shown more deeply than how you are caring for her and living your life now. You are truly an inspiration. I have had many different troubles in my adult life, fortunately nothing such as you are dealing with, but I always come back to ‘He doesn’t bring you to, what he won’t get you through’.
Blessings to you and Mary Ann my dear friend.