- 11 Feb 2013
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My wife is convinced she will get dementia, her dad died from it and so did her grandmother….I’m rather hoping not.Depressing thread. My wife is in the early to middle stages of Alzheimers, which we reckon also probably affected both her grandmothers. It's not an easy road. At the moment, it's mostly pretty trivial things like cooking utensils turning up in strange places, and the need to repeat things. But her sense of direction, which was never good, has now gone completely, so on a couple of occasions when she has gone for a walk on her own, we've been lucky in that neighbours who happened to be passing and rang me to check that she was OK in an unexpected place. Solo walks are out now.
Fortunately, she doesn't entirely realise the losses, and (with a doctorate and an academic career behind her) she starts from a fairly high level of function.
Haven't been able to face watching the BBC2 programme. Dealing with my blood and prostate cancers is something of a doddle by comparison.
A maternal aunt has lewy body dementia, at 80 she's a lot younger than my Mum but was diagnosed not long after my Mum was. However her symptoms were advanced right from the start, hallucinations and wandering. she now has round the clock care at home.My wife is convinced she will get dementia, her dad died from it and so did her grandmother….I’m rather hoping not.
they both had Lewy Body dementia, which seems to affect physical more than memory or cognition.
What I find sad is my FIL knew a long time before the family, he never said anything, just kept it to himself. Looking back the signs were there - subtle decline in cognitive ability, he stopped reading the newspaper, stopped watching the news. His family thought he was depressed.
There are some strange things that happened: his writing became very very small. when Walking he struggled to turn, taking pigeon steps to do it…..I think these are unique to Lewy body.
We did try CBD oil, but I’m not sure it helped.
I don’t like to be negative, but sadly the NHS and social services has a totally fragmented and pretty useless system for families living with dementia.
In what way?I don’t like to be negative, but sadly the NHS and social services has a totally fragmented and pretty useless system for families living with dementia.
Yes MDTs (Multi Disciplinary Teams) is where all health care regions need to be. Some are, some aren't and some are part way there. Progression is down to the willingness of all health and social care bodies to work together; unfortunately not all of them are that willing as politics and money get in the way. I managed a change programme that launched MDTs in one major city in 2014/15, it was hard going but a lot of progress was made but mismatched financing and protectionism were always an issue. My wife is a senior manager in the NHS and a close friend is a senior manager in a large local council and both are still battling the same issues I had over 6 years ago.In what way?
I work in a forward thinking pact (pro active care team - MDT) team where GP, SW, OT physio, DN all work together trying to prevent older patients getting worse.
Amen to that.I just wanna go fast......
Although my parents, thankfully, haven't gone that way (mum passed, dad still clinging on but slowing down mentally and physically at 90 years of age), some of what you have said rings true with my mother in law (who died of dementia). It's utterly horrible, especially for those holding things together. I guess we'll never know for sure, but I like to think that those suffering, especially as the disease grabs hold, are unaware of what is happening anyway.Amen to that.
My dad had been a "smart cookie", an achiever, well respected by his employers and peers.
Mid-40's, he started with an "annoying habit" of repeating himself. Amusing to the rest of us at the time, who just assumed he was emphasising his point.
Before he reached 50, he was diagnosed with (the recognised term then) "pre-senile dementia"
He went downhill at a rate of knots.
We - the kids - had left home by the time he reached his 50s, and although we realised things were worsening every time we visited, it was the "occasional relevation" that floored us. One that springs to mind was discovering that, although he still drove, my mother was telling him when to use the clutch, and she was changing gear from the passenger seat...
With co-operation from his GP, we arranged to have his licence pulled.
He made it to 66. Couldn't speak, couldn't walk, had to be spoon-fed, and was sometimes literally tied in a wheelchair by his wife to stop him getting in trouble.
Bluntly, it was a relief to all when he went, including the man himself...
Move on a few years, my mum now in her mid 70s. Dropped in to see her one day, and found that the door into the lounge was locked.
"They don't like it open..."
"Shhhh! They'll hear you! The people upstairs"
Of course, I had to look...
"There's nobody there. Who would be? You live on your own..."
She virtually snarled at me. This was suddenly not my mum.
"They'll have gone for lunch..."
She was convinced that the home was an office. The bosses weren't very nice. She didn't like many of the other people there either. There was only one person she liked, and he sat "over there".
"Over there" was the TV. She liked Eamonn Holmes. He worked there too, but didn't do very much apparently. Nice, but lazy.
Frustated, I went to the TV set...
"It's a bloody TV! It's not a person! It's a TV set!"
It was then I noticed something else...
"What's this? It's wet..."
"He was thirsty, so I gave him a drink...."
She'd been pouring teaspoons of water down into the TV through one of the air vents at the rear.
How the hell she'd not electrocuted herself over the weeks, God alone knows.
She made 82, totally ga-ga by this time, and violent with it.
Alzheimers/dementia and other stuff on the death certificate.
Nasty, nasty, nasty affliction.
As far as I'm concerned, both my mum and dad "died" umpteen years before they actually did.
My heart goes out to anybody suffering...and I don't just mean the patient....
Hi Robin, that rings true. My Spanish father in law passed away in April with dementia being the official cause, but he went downhill very fast despite always being such a fit and strong 76 year old. The carers said they had never seen such a steep decline, and he ended up hospitalised for the last two weeks.There are some strange things that happened: his writing became very very small. when Walking he struggled to turn, taking pigeon steps to do it…..I think these are unique to Lewy body.