I was having a chat with another dementia sufferer yesterday. I'd wanted to make contact with her for a while as we were diagnosed at the same time and with the same type of dementia. She's bright and opinionated (like me!) and about my age too
I thought it would be valuable to share our experiences and how we cope with it all.
She said she goes through periods of sadness about it - the slow conveyor-belt toward an undignified death, what it's done to career and relationships etc.
I too get sad about it all, especially what it's done to my relationship with Jacqui. The core has been eaten and we are just left with a hollow middle. Outwardly it looks like a marriage but long ago the heart had started to erode. We have had separate beds for a couple of years now (maybe longer). When we stay away or have friends over we bunk up together like old friends would. We still love each other, go out, share the chores, do the things old couples do, but the other aspects of our marriage have gone.
And that does make me angry.
I can't blame what's happened to us entirely on the dementia. And having dementia doesn't mean I'm always to blame when there is an altercation or disagreement. But it certainly doesn't add anything positive to the mix.
I keep saying this will be the last job I do. I've been working for 8/9 days on a church in Barnes. That one. It was very straightforward work. The physicality was a bit of a shock to the system, but the tiredness I'm feeling is not physical, it's mental. Mental tiredness for doing a very straightforward bit of grunt work.
It takes that much out of you to accomplish what in the past you'd have considered an easy day. I can feel pressure in my cranium - as though I need to trepanate myself to let the steam out.
|So glad I went private
So I end up flopping around the house for a few days. If I feel better the next day I try something out. Yesterday (3 days after the last full day of work) I wrote some of my D&D adventure. It went really well. As soon as I knuckled down all the thoughts and ideas that had been festering/gestating (take your pick) all poured out onto the page and made sense. Quite a few typos...well, mainly typos in fact, but I corrected them all and I can't wait to run it now.
Going to have a look at some more jobs next week. Again, straightforward jobs. Someone asked me if I was only taking jobs if they provided the right challenge. That sounds like something you'd say in an interview. I would answer that I want jobs which provide almost no challenge whatsoever. Those are the jobs I want.
I puke when I read posts on Linkedin.
I've become rather averse to bright light (as this headline would infer). In the beginning (Biblical reference) there was noise. The noise is a pain. It's difficult to filter out. Like a single track recording of 2 separate sources, they intertwine to become one incoherent jumble.
I noticed when I was on holiday a year ago in The Lakes that if I was in an old dark pub I could filter out noise and concentrate on conversations far better. When we were standing outside with road noise and sunlight I found it almost unbearable, like my senses were being overloaded. Maybe this is what people on the autistic spectrum experience.
It may be nothing to do with dementia whatsoever, just deterioration of my eyesight. No one else when I mentioned it in our dementia support group suffered with this.
I didn't mention the protruding canines did I?