Hi
@RM3
I took my OH to the Memory Clinic first appointment where we saw the nurse specialist for a chat from which she elicited the state of play of my OH's deterioration and ran the tests, which my OH tried, but couldn't do much of it. Mind you, in many ways she was quite with it - for example, the nurse asked her if she knew where she was, what floor of the building she was on, etc. My OH told the nurse in no uncertain terms that these were stupid and irrelevant questions. My OH explained that I had taken her in the car, we arrived, that I'd wheeled her (in wheelchair) into the lift, pressed the button, and here we were and that it didn't matter whether she was on the 2nd or the 7th floor, unless my OH said, you are the nurse as you need to know you are going to work in the right place! The nurse didn't really have an answer to that other than the question is designed to see how much attention the patient pays to where he/she is going.
My OH didn't like going back - fear I think. Knowing there is something wrong was a big knock to my OH's confidence, that then affects lots of other things. She was out of her comfort zone, felt vulnerable, The next time, after we saw the nurse, we saw the doctor. He said that in his opinion my OH had Alz, and he would write a letter. I got the impression that (a) Dr felt he had to say what he thought the diagnosis was, and (b) that he had to say this to the patient, my OH - doing his duty, and (c) that only after a formal diagnosis was given could we then seek help, or that those offering help would take it seriously as it was a dr's formal diagnosis and not just our word. The Memory Clinic Dr prescribed the initial meds to help (donepizil).
My OH didn't like the words "dementia" or "Alzheimer's", and didn't want me to tell people unless she told me I could. I think she was worried about the stigma, that others would then have different view of her or would treat her differently.
Of course, all those close to us - immediate family, close friends, neighbours, etc - had known for quite some while. I said telling people would help, as they would then know better how to deal with her, and be more patient with her word failures, her memory failures and behaviours - but in general the wider public know v little about these conditions apart from it adversely affecting someone's memory.
When she asked what was actually wrong with her, I explained that she had a chemical build up of amyloid proteins in the brain that blocked the passing of messages in the brain - there were tangles in the workings of the brain. She was accepting of this description as tangles and muddles didn't seem, to her, to be too bad. There was a time when she said, OK she didn't mind if I told friends, etc, but she has never liked the words dementia or Alzheimer's and probably never herself used those words.
As to what was wrong - she soon forgot about it, didn't ask, and hasn't needed to. She didn't seem to connect those words with the various skills that she began to lose - like not being able to control a pen, and stopped writing, like not being able to play piano or guitar that she used to love, as well as she'd been able to, so she stopped doing these, lack of memory so had difficulty in reading novels. I then adapted her life and gave her magazines with short articles she manage in one go, before her concentration reduced.
The biggest changes from my point of view as carer, as you hinted at, have been (a) we can no longer have conversations, chit-chat, debate, arguments, etc (b) that you realise you're living together apart, even if there are few activities you can do together and thus (c) the carer's life becomes the patient's life.
Sorry for the long post, if you're still reading.
Best wishes
x
