I have come to realise how much suffering there can be before diagnosis that it makes the final diagnosis almost a relief. But at what stage do we start to look without things being overwhelmed. I can only begin to imagine how you must have suffered for so long with this, not knowing the answer. I think you had such a good friend who recognised this and dared to speak openly to you (a good friend indeed who didn't walk away ) and wonder did she have her own experiences?
It makes me feel quite guilty for the thoughts I had about my mum in the early days. I couldn't understand why she kept falling out with friends, why they couldn't live up to her high standards when she was so lonely but didn't want to see them. of course she had to blame them, because she had no idea it was her. I thought she was attention seeking with her continual demands. I always used to think she would one day try and get me arrested, and indeed she did. as awful as things are now I just need to remind myself of those " good old days".
I am struggling to word this correctly, and this very struggle is making me look at myself suspiciously. If my husband gets in a mood, forgets something, acts out of character I look at him suspiciously and worry about how I would cope with him as well as mum. i worry about how my family would cope if I "caught" it. I worry about my sister who lives on her own in France. How would we know if she has it. I look at work colleagues and sometimes wonder if there is a reason they just told me the very thing I told them the day before. Are they really up to their job of management when they forget so much? So my view of the world has certainly changed and has made me very fearful and anxious, but is this just a result of my experiences or is it how it starts?
As much as an early diagnosis would help and we should look out for symptoms, if we all started looking at every bit of strange behaviour and wondering then we would all be as paranoid as I feel. maybe the ostrich principle is best, ignore it and it will all go away, worrying wont make any difference. I think there are so many horror stories on here that even with a diagnosis things are very hard for most sufferers and their families. "There is nothing to fear except fear itself." If we knew the system was geared up to this horror that is dementia, then maybe I would not feel the same fear as the suffering would not be so great.
Its an interesting post to wonder whether we are getting it right by waiting until things are getting desperate or should we as a society start looking much earlier. Could it turn into a witch hunt with dementia being blamed for everything. With such a lottery as to the help you get anyway and no cure in sight I am not sure I would want the answer. But a lot more education about this and how to cope with the disjointed system we have would surely be of benefit.
I hope i haven't been insensitive here, I am really just writing as I would talk and of course some things may have not even occurred to me, but thats what conversation is about so I am really interested in how useful early diagnosis is. It destroys lives whichever way you look at it.