When my mother's journey through the official process began, requiring labels like Alzheimer's in order to access the appropriate advice, services and benefits, I failed dismally to protect her from the damage such a label can do. Mum wasn't prepared for the diagnosis, wouldn't accept it, rebelled against any attempt to help her, and my reluctance to lie or 'bend the truth' made things harder for her than they needed to be.
Regrets, eh... if only you could cash them in! We'd all be rich enough to cure this darned disease between us. With maybe a little cash left over for a holiday... or at least a packet of chocolate Hob-Nobs. I'm easily pleased these days.
It took many months of patience and largely avoidance to find a way through the maze of fear and frustration. I eventually managed to persuade Mum that "Alzheimer's" is just the world's very lazy way of describing all manner of memory problems, from the mildest forgetfulness to the full blown nightmare Mum imagined when she heard the word. This approach seems, within reason, to be one which most professionals in the area are happy to follow... sometimes with a little prompting! I have learned to be 'rude' and interrupt people if I think they're heading in a direction which will end in the A word.
I also found that 'brain pills' for boosting her memory was an acceptable way of describing and labelling the donepezil, though it took a while to find a dose and delivery regime which suited her physically no matter what they were called.
It undoubtedly helped when, with time, Mum realised just how bad her memory can be (on a bad day, obviously; no need to debate whether it's awful all the time). Examples would crop up occasionally which would help her realise why family was worried, and wanted to help her more. And slowly (painfully slowly!) these little cracks in the door allowed me to open it up wide enough for her to accept more help, even if so far that help's only from myself. At least she's safer and happier now than she was.
As for knowing who to share information with... well, I was sort of lucky in the fact that one of Mum's neighbours is a tough, no nonsense ex-nurse, and she told my Mum that the original problems she was having were likely to be down to Alzheimer's. It was blunt and distressing at the time, but it at least helped get the ball rolling at a time when I was struggling to work out how the heck to get Mum to a meeting with a doctor.
That neighbour had obviously mentioned this to others, and this actually helped when I started spending my days off with Mum and saw the neighbours more. It was clear some were treading on eggshells trying to be tactful, and it was very easy to tell which were happy to be part of the extended support net and who were happy to run a mile. With both kinds I was usually able to simply take a neighbourly opportunity to say I'd be around more now that Mum's health wasn't what it used to be, and I'd really appreciate it if they'd take my mobile number just in case they were worried about Mum at any time.
I suspect most of them had seen Mum wearing clothes inside out or back to front by then, or similar 'eccentric' behaviour, and it was probably a relief in a way for them to know that I was aware of Mum's 'memory problems', that Mum was also aware of her 'memory problems', and they were relieved to have my number to call.
Of course these days there are very few families who haven't been touched by this dreadful condition, and that helps both recognition and acceptance. The bottom line for me was that I was more worried that not enough people knew Mum was vulnerable than too many. So although I live in fear of Mum finding out just how many people know how much, or of the wrong type of people discovering her vulnerability, I feel she's safer -- overall -- than she was before this journey began, and hasn't lost her independence totally. Yet.
So... so I've written an essay and shed no light on the subject whatsoever. Story of my life! Maybe some of it will be useful to someone though, so I'll hit the submit button rather than deleting it all as I've done countless times in countless threads during the past year or so of lurking.
Good luck out there everyone, and be kind to yourselves. Especially when it comes to going to bed early instead of sitting up typing or reading forums. ;-)
