Thanks Wordy
I'm already in touch with the Admiral Nurse for our area and she's (like me) more of the opinion that mum's condition sounds more like Lewy bodies. We're not early on - just late getting a diagnosis. Mum's problems began around 10 years ago, with problems with vision that she put down to her macular degeneration at the time and then there were little but seemingly odd lapses in memory, like one day when I brought over some veg I'd grown in the garden and she claimed she'd never seen them before and asked how to cook them! Around 6 years ago, she began to have really noticeable mood swings and started to become obsessive about her book collection, insisting she had to put everything in order, but then not actually putting anything in order. Her ability and enthusiasm for cooking went next: she struggled to even make scrambled egg on toast and she gave up reading because she couldn't do it any more. By the time Dad died (suddenly) he was seriously worried about her and for the last 3 years, she's struggled with walking and the contrast between good days (or hours) and bad ones is unbelievable. At worst, she can't recall anything; can't life a cup to her lips and drink; can't follow simple instructions and get really obsessed and agitated about money and says some pretty cutting stuff. On her best days, she's lucid, chatty and follows instructions well. She's needed to be dressed and helped with washing for the last 3 years and finally gave up trying to make her own hot drinks around 12 months ago. She also needs help going to the loo and can sometimes only realise she needs to go at the last minute!
At first, the GP thought she could have thyroid problems and altered levels. He'd seen her a couple of times in person and it was always days when she could manage to put on a smile and assure him she was fine, but everyone was 'fussing'. Eventually, I went to the GP behind her back and he did a home visit and told her she was being referred to Memory Clinic - so we got there in the nick of time, but the follow-up with the doctor was by 'phone.
He said Alzheimers because of the 'steady progression' (we certainly never told the nurse that the progression was 'steady' - it's up and down like a rollercoaster but the general trajectory is down) and because Lewy bodies is much more rapid, so anyone with around 10 years' worth of symptoms couldn't have it. He did say it could be 'mixed' but the only way to diagnose LBD was by brain biopsy.
He's written a referral back to our GP, suggesting she's too far gone and too frail for any medication, but we, her family are doing an excellent job of caring for her and so it would appear that's that! All I really wanted was a ramp for her, so she can get down the steps into her back yard and enjoy the sunshine. The good thing is that she asked me to go through the diagnosis with her on a lucid day and she is genuinely relieved that there is an explanation and that's brought a bit more acceptance from her that there is a real problem and more importantly, one that is outside her control and that nobody is blaming or judging her for, or seeing her as anything less than our lovely mum / mother-in-law / cousin / granny.