My sweety

I get a little frustrated and much annoyed with my sweety at times. This woman who was vibrant and independent only short years ago now comes and parks herself in my face as soon as I stir in the morning and does increasingly annoying things if I ignore her even just a little. She has dementia, to the point where she changes the calender to the next month every day because it's a new something in her mind. When you become a full time caregiver to someone you care deeply about it changes your life. In many ways you put your life on hold, for how long? For the foreseeable future at least, and you don't want to think of the beyond that time anyhow. I am not always up to the task, 24 hours a day. There, I said it.

Dementia is a strange disease to behold. The mind does not quit working, it just works differently. Short term memory loss is just part of it, and even that is inconsistent. If something makes an emotional impact whether funny or scary or whatever, it can be remembered very well, for a few days at least - emotional things must be remembered by our brains at a different level than humdrum things. My wife used to enjoy watching television and that has really tapered off, it's often on the weather channel now, she likes the music. I think the reason is that the commercials are too distracting from the program to remember what was on three minutes ago and the programs get lost in the fog. Reruns from years ago seem to be easier to follow because her brain still makes a connection with things remembered from the past, although even that is waning.

Emotional things, such as a normally minor problem one of our children may have, can become an all consuming topic for a day or two till it loses relevance to the daily routines. You become torn between involving her in the conversation or isolating her from the idiosyncrasies of life, because it's just too hard to deal with the gloom in her mind surrounding these incidents, and the endless phone calls which the other party has a hard time comprehending.

I have a sense of humour, albeit sometimes weird, and I can sit and chuckle to myself in most circumstances by viewing the world from a less than morbid perspective. It usually carries over to my dealings and conversations with others, and often I can lighten the mood in our home with a little tomfoolery, but sometimes the depression that invades her mind is too deep and she just gets angry that I'm making light of the world. Those bootstraps just don't lift us over the murky waters. The only thing that works is to change the environment, take her for a ride. She loves Chinese food. She enjoys eating in a park. As soon as I mention a diversion she lights up, problem is it has to be right now, immediate gratification. So you become very careful about mentioning plans for later in the day at 9 am. I learned this lesson well from a teacher with dreadfully smart mind, a dementia crazed genius. Matching wits, I don't often win, especially when it's with no holds barred from the other side.

There's 'stories' she tells me too. “There was a knock at the door when you where away. They called me by my given name,” (which no one knows except for the legal guys). So you become detective. Did someone find a piece of our discarded mail, and knowing I was not in, try to get her to open the door? Or was this her imagination, real as reality, playing on her fears of being left to fend for herself in a less than comprehensible and scary world. If this actually happened it would be a real problem, so I ask her if her 'three' cats slept peacefully with her while I was away. “Oh yes,” she says, “They never moved from my pillow.” Moderate assurance for me that no one knocked because those 'three' cats would be gone out the cat door for half an hour if there was a strange knock at the door. But it makes for care, doesn't it?

So between distractions and cooking and cleaning and fixing and finding I blog away. This took me 7 hours. Sometimes I spend days on one ambiance, fribbling or not. 'The good lord giveth and the good lord taketh away.' I wonder if the soul who wrote that had a spouse with dementia.