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Unconvinced by Diagnosis - but does it matter?

Seaholly

Registered User
Oct 12, 2020
19
Mum was diagnosed with Alzheimer's just before lockdown and the actual diagnosis was done by a doctor who had not seen her, based on the assessment at Memory Clinic with the Memory Nurse, who was brilliant with her, plus information supplied by me and OH.

I was surprised when the diagnosis came back as Alzheimer's because I'd done lots of reading and research and not everything rang true. However, it seems to be with dementia that every site, leaflet or professional just drip-feeds bits of information, rather than giving the whole picture which is very frustrating!

Mum's problems began with vision problems: she started failing to recognise familiar faces and one day realised part way through reading that she literally couldn't read anymore as the words were moving around the page and the letters kept disappearing. Not too long after, she started progressively forgetting simple procedures like turning off cooker rings and seemed to lose confidence in the sort of tasks she once enjoyed, like baking and knitting and going out and about with her friends. She also eventually became obsessive about sorting out things - books, clothes etc., but in reality she just spent ages shifting things around and then blaming Dad because it was a mess!

She also began to get very angry and sulky with Dad and really fall out with him, sometimes for hours and occasionally for days, leaving Dad wondering what he'd said. She started to have accidents at night too and get too confused to find her clothes and get properly dressed in the morning.

Next to go was mobility and spatial awareness. She developed a blank stare (which still comes and goes) and seemed to just forget to lift her feet up when walking, so she shuffled along and took huge steps over 'obstacles' that weren't really obstacles, like changes in floor covering between rooms. She'd also sometimes slip into a state where she forgot how to eat and would use the wrong side of the spoon, or let the contents of the spoon just dribble onto the floor and then lick the empty back of the soon.

Things started to be noticeably 'different' about her around 10 years ago. Now she needs full-time care, has hallucinations, bouts of delirium and spells of complete confusion where she seems to slip into a parallel reality where we're all out to take over her house and money and leave her to die and she can't do anything like eat, bring a cup to her lips, or follow simple instructions to use her commode or get dressed.

The doctor giving the diagnosis said it 'had' to be Alzheimer's because the progression had taken so long, but I keep thinking about Lewy Bodies and even PCA because of how it started and because I know from the time she had to go for respite in a care home, the massive difference being at home primarily cared for by family actually makes. I'm lucky in that my background is in animal husbandry (okay, I know that sounds odd, but bear with me!) It means I can almost instinctively deliver the same clear instructions, in the same tone, with the same body language day in, day out and pick up very quickly on her mood and body language and adapt and improvise. I don't always get it right, but when I see other family members and some carers who have been here (and not lasted long!) I am just blown away by how many nuances they are just blind to, because to me, they aren't even nuances, they are like huge, neon signs!

What I would dearly love to know though is how long she will be with us? I'm fed up of all the mixed messages from 'professionals' because the opinions I have been given range from 'she's so frail, anything could spell the end now, like a bad cold, or a fall' though to 'I'd say months, rather than years, but that could be more than 12 months' and at the other extreme, 'well, she's not become violent yet, so I'd say you've got it all to come yet - it could be another 10 years!" (yes, that particular agency boss was well and truly fired after delivering that line with a smirk)

It's so hard to know how to plan ahead for her! I've finally got a great care agency to help and we're (just) managing without additional mobility equipment and mum is on the GP's Frailty Register, so at some point, I know the District Nurses can be mobilised and we'd be provided with a special mattress if she becomes bedridden (we have a hospital bed anyway)

Mum has started to talk to me about dying and saying she feels she's coming to the end of her life because she gets so confused. She says that in lucid moments, which are few and far between as most of the time, she's sort of hovering on the edge of reality, so she lives in her house but thinks it's some kind of communal house or hotel; she knows she has a reclining chair but is convinced it is at the opposite end of the room and she knows there is a main road outside....but actually, to her, it runs right through the living room! She sleeps most of the day and has started to eat and drink less too and doesn't want to talk to any relatives or friends. This is partly because she can't recall them and partly because she is afraid of forgetting who they are mid-conversation, or just not following what they are saying and falling asleep!

My gut-feeling is that we're coming to an ending, but I'm not sure what the ending is. Is it the end of life, or is it the end of this stage of our lives because she's physically okay, but checking out of reality and entering a stage when she won't recognise any of us or understand her surroundings any more at all?

I just wish I knew, because if we are coming to The End, as it were, we'd pull out all the stops to keep her at home, but if it's The End As We Know It, it means thinking further ahead and coming to terms with the possibility that she might needs years of care that we're not in a position to provide at home.
 

Melles Belles

Registered User
Jul 4, 2017
477
South east
Difficulty is picking up her feet and the blank stare could be Lew Body dementia. Planning and organising is usually affected before memory in LBD.
 

Sarasa

Registered User
Apr 13, 2018
2,002
I'm sure it is @canary who says that when you get to the later stages all dementias are pretty similar. A proper diagnosis is useful in the early stages as drugs that might help for Alzheimer's could be counter-productive for other types of dementia.
My mother refused to engage with the memory clinic, though she did agree to a brain scan. That showed 'normal age related shrinkage'. By then mum's behaviour was far from normal but we got nowhere with getting a diagnosis until she had a meltdown in the doctor's surgery. A psychiatrist was sent to see her at home and diagnosed probable vascular dementia.
Mum is now in a care home, and the manager mentioned that he thought mum had the signs of frontal-temporal lobe dementia, something I'd thought was a possibility. Her main symptoms were a total lack of logic, an extremely short fuse to her temper and indulging in reckless behaviour. After she started drinking in the local pub with random men and bringing at least one of them back to her flat was when I decided she needed to be in a care home.
At the time, eighteen months ago, her memory, though not good, wasn't that bad. Now it is very poor and her mobility has also declined markedly, so she presents far more like what I would expect someone with dementia would do.
As for how long your mother will be with you is a tricky question. I've read that for people in their nineties the average time between diagnosis and death is three years. We're coming up to two years since diagnosis and four since I started to be seriously worried about mum's cognition, and despite the decline in mobility her heart, kidneys etc are still going strong so I expect her to be with us for a while longer.
 
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canary

Registered User
Feb 25, 2014
13,891
South coast
Hello @Seaholly and welcome to DTP

I can see why you are thinking about PCA rather than Alzheimers, but I think I would agree that it doesnt really matter. All dementias are progressive and this means that more and more areas of the brain get affected, so eventually they all get pretty much the same. There is no cure for any form of dementia - donepezil can improve the symptoms in Alzheimers, but it doesnt stop the progression, so all you can do is sort out each symptom as it comes along.

Unfortunately, there is no way of telling how long its going to last - oh for a working crystal ball!!! Dementia is something that is impossible to plan for. No two people have exactly the same symptoms, or progress in the same way - even if they definitely have the same diagnosis. I wish it could be planned for, then we would know how long we have got caring, and how far their finances have to go, but it is, sadly, just not possible.