There are days, and this may be one of them, when I wish for Cheryl’s physical Parkinson’s symptoms to be worse and her mental Parkinson to be less. She actually moves quite well with the C/L in her system during the day. If in the middle of the night she might get up to toilet once or twice she moves pretty well then too. She might be slow and slightly disoriented but at 3 AM I am too.
Late Autumn and Winter is the worst for her mentally. Last evening she stayed up very late; frantically organizing and reorganizing her papers and cards in her office. She eventually allowed me to help her to bed about 11:30 PM. I heard the clock strike midnight before she succumbed to sleep. She had been talking gibberish about the kids.
five repetitive themes
She is often confused as to who I am. I am that other Paul. I am Dad (as I was last night encouraging her to get rest before our big outing with Marilyn.) Some times I am Scott but if not she will ask, “Did Scott go home? Or, Is Scott here?” Some of this is simply aphasia and she cannot find a name in her head. (Me too, occasionally.) If I cause stress in her by insisting on something she will be very anxious about me being around. Insisting is always a bad idea but I often forget that. I try to hedge and let her decide she wants to – go to bed, eat dinner, have a cookie, have cereal for breakfast, etc. Often that works, often it does not. It can be frustrating when you are also tired.
“I want to go home now.” – She believes for a time often late at night that she is not home and wants to go home. Sometimes this delusion is overpowering and I help her find shoes and a coat and I drive her around a four mile circle and home. I reinforce the we are home thought by saying plainly, “we’re home now. I’m glad to be here finally.” That will reset her brain and she starts to think we are home. Sometimes it works only partially and she thinks – wow, this is neat. How did they get all our stuff here so fast?
Recently she has asked how we will get all our stuff home? Do we need to get some movers? I merely replied yes, I will call them tomorrow and set it up. — I wonder how long the “I will take care of that tomorrow” ploy will last. For now it does. She has not yet asked when I was going to call the movers in the morning while I am organizing breakfast.
“We are in Detroit” When Cheryl went to high school she was following the prescribed path to become a Franciscan nun. I met her originally in the summer between her junior and senior years in high school. When she was a freshman, a teacher she had realized she may have some potential in english or journalism and arranged for Cheryl and a couple of her classmates to attend a journalism workshop in Detroit for a couple weeks between her first and second years in high school. It made a deep impression on her. In many ways, when she talks about it, it was as though she traveled to a foreign land. And she thoroughly enjoyed every aspect of it. Her favorite TV show and the only one she really watches is a show called Bob (<3) Abishola which is set in Detroit. Watching the the show, she will tell me stories about Detroit but mostly I think she looks at the screen because some views will spark a memory.
“When are we going home?” Is her theme some evenings when she is sure we are in Detroit. I did not realize at first where she thought we were. I discovered this later through conversation. — I can respond, “We are staying here tonight and going home in the morning. Is that okay with you? It is late and would rather drive home in the morning.” Most times traveling along with this theme she responds with, “Yes that is a good ideas. We should rest first.” Once in awhile the Detroit delusion lingers until morning. It is often gone at breakfast.
It is time for office work — is usually a physical activity. In our second bedroom that became her office when we bought this condo she will spend time organizing. Or doing nothing. It is her version of punding. If she starts doing it at 9 or 10 PM there is no easy fix to getting her to be interested in sleep even when it is obvious to me that she is very tired. She takes a prescription to help her sleep as well as melatonin to help her fall asleep but her will is strong when she decides to – get this stuff organized. It breaks my heart to see her do this mindless activity. Last night I sat with her because the later she stays up the wobblier she gets but her confused mind will not let her see this in herself. In her brain she is a 35-year-old computer database analyst and the deadline is tomorrow.
These behaviors generally occur late in the evening. I sometimes succeed in not being Mr. Cranky Pants. This part of His plan sucks for sure. It is hard to be calm when the Plan has dumped on you and the previous night was smooth and uneventful.
Whiskey Tango Foxtrot comes to mind.