Dementia and me.

[Flynnwood]

I just hope this latest drug is the start of delaying or even stopping progression, too late for my Mum but hope for others who have yet been diagnosed.

I remember one point in time.

"I'm alright now you are here."

 

[RobinBHM]

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.

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.

 

[mikej460]

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.

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.

 

[Jameshow]

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 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.

Cheers James

 

[mikej460]

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.

Cheers James

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.

 

[Rodpr]

My mum was taken by dementia over a period of 5-6 years. Luckily my son and his girlfriend were able to live with her in her house for a year -free rent in exchange for care in the early-ish stages. We had to put her daily sherry ration in a little bottle because she would insist she had only had one glass. She also loved feeding the pigeons and got through pounds of birdseed. She went from being an active, independent woman who swam outdoors throughout the year and went to concerts, opera and exhibitions to a life in her rocking chair. She couldn't follow a plot but watched the news, then horse racing and finally just nature programmes. She spent her last couple of years in a wonderful care home full of laughter and pets - I enjoyed popping in to see her every day. I really feel for people who were cut off from relatives by Covid.

 

[Adam W.]

Dad has been fiddling with the wiring in the light switches. He got really annoyed that someone had been screwing with the switches and that they were hanging off the wall. So I put it all back together and all was right, the screwdrivers have now been hidden.

I guess it's better than coming downstairs with a banging headache, to find that the gas has been hosing out of the stove all night long.

 

[clogs]

I feel for u guys who have written prev.....
slightly different....
my lovely MIL had a series of mini strokes that took away everything....
then for some reason they did a brain shunt.....WHY.....
she was asked after the op who the Prime minister was....
my wife said she couldn't have told u that 3 years ago due several strokes.....
she couldn't comunicate anyway.....all u ever got was a vague stare...
anyway finally she got home with a care package, totally ga ga...
after another few years doctors decided to stop all meds as there was nothing going on upstairs.....she lived for another 5 years sucking money from the social services.....the whole family wished for an early end so that monies would benefit other's more needy.....
we just need more joined up services and care....
her last few days/week were a Morphine sleep.....why not sooner....?
she's gone now....still remember her how she was.....
I just wanna go fast......

 

[Cozzer]

I just wanna go fast......

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.
"Why?"
"They don't like it open..."
"They? Who?"
"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....

 

[ian33a]

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.
"Why?"
"They don't like it open..."
"They? Who?"
"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....

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.

We are having conversations that we've had with dad half a dozen times before and his confidence goes up and down day by day. We had to politely tell him to no longer drive and there was gentle protestation until I got an offer from the local dealership for his car. The offer surprised me and delighted him so we grabbed it before dad changed his mind.

It's a total worry for anybody dealing with older folk who don't see things the way they used to. MIL ironed the carpet every now and again and the gas was often left on, not ignited. You want them to have independence but you need them to be safe and the two don't always go together after a certain stage.

 

[pip1954]

Hi my wife was diagnosed a few years ago with vascular dementia ,she still does not think she is Ill she tells me the nurse who gave her the test doe not know what she is talking about we went to hospital and they gave her a test which she failed she is only in the early stages but already changes she used to be quiet but she is starting to argue and everything is my fault a lot of the time I just suck it but I just have to put her right I know it's not her it's the illness that's causing it but it is bloody hard cheers to everyone

 

[dickm]

Fortunately, when my wife went to renew her licence earlier this year, she messed up the form, so it was relatively easy to persuade her not to correct it, and so she effectively relinquished it. She'd never really liked driving, but living in what is described as a "remote rural area", it was useful having a second driver. Still got two cars, her Fabia and my Yeti. Should get rid of one, but need something that will tow a trailer, and newer Yetis (indeed all s/h cars) are silly money.

 

[Nick.]

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.

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.
We were fortunate enough to actually get over to Spain to see him despite still being in the middle of lockdown - we got over there and saw him straight away that evening after the flight - He passed away 10 hours later.
My own view is he was waiting for us and my mother in law to turn up and then he just let go knowing that we were all there to look after his wife. He wasn't talking, but knew we were there.
He had a second property in Spain, and it was the writing on all his later key fobs he'd left with estate agents and paperwork that really made me realise how he had changed as we hadn't been able to visit as normal since mid 2019 due to Covid.
He was always meticulous but his writing but in the last 6 months had visibly changed to as you say very small and almost hieroglyphical at times.
My mother in law down-played his deterioration to us, but the neighbours told us of some of the issues that she was having to cope with on her own when we finally got over there.
She had a truly awful time which we just didn't really know about - he started hiding under beds and refusing to come out to name just a few - the neighbours used to step in to help. I wish she's have been more open in needing help to be fair as she was left to deal with it on her own, but that is her proud independent mindset.
The (very honest) pool cleaner gave my Mother in Law an envelope with 9,000 Euro's in cash inside that he had found one day next to the pool - we still have no idea why my father in law left it there, or even where it came from, but it was just another indication of how far from normality he had descended.

This is a sad thread I agree - my best wishes to all out there is all I can say. It's a terrible condition for all involved.