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At Last - A Diagnosis

Mousehill

Registered User
Nov 28, 2018
69
Today, a doctor from Memory Clinic called. It hasn't been a good day, as mum had become very distressed earlier in the morning. The verdict is Alzheimers and although I questioned this on the basis that the first thing mum noticed was vision problems and the marked difference between good and bad days, or even hours, the doctor said it was 'very unlikely' to be Lewy bodies because that is usually much faster in its progression and we first noticed problems with mum around 9 or 10 years ago. Today was the last day of Memory Clinic, so we were just there in the nick of time. Mum will now be referred back to her own GP and I've been told to just keep doing what I'm already doing in terms of care.
 

Wordy

Registered User
Mar 27, 2020
20
The most accurate way of diagnosis is a supporting MRI . If it's a fact that it's alzheimer's and quite early; you need to talk to either dr or mental health team about possible medication which could slow this disease down. The symptoms can depend upon what part of the brain is affected as each lobe of the brain is responsible for different functions. The best resource ive found is the social care for excellence website which has modules for learning online. If you have admiral nurses who specialize in supporting individuals and families with dementia, they are invaluable. You can Google to find one in your area. They are almost the equivalent to Macmillan but instead of cancer support, it's dementia. Hope this helps
 

Mousehill

Registered User
Nov 28, 2018
69
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.
 

Wordy

Registered User
Mar 27, 2020
20
It's so hard isn't it especially in covid 19 times. We managed to get access to garden through Age UK. They referred us to a maintenance/handyman team. Might help with ramp? Problem now though is lockdown. It sounds a wonderful family that are pulling together for your mum. I find like you that it helps mum with transparency and explanations although sometimes she doesn't want to hear about that "damned dementia ". Also it's hard sometimes figuring what is physical and what's dementia. The problem is no person with dementia has the same issues and affects our loved ones so differently. ❤