Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Can you talk to me about your experience of Alzheimer’s

39 replies

Veuvestar · 26/03/2021 11:27

How quickly it progressed and what it was like at the end
Just looking for someone to talk to really
My uncle was officially diagnosed 5 years ago at 65. He was really fit and strong and physically healthy so we thought that might stand him in good stead. But it’s really taking it’s toll now Sad

OP posts:
Oldieandgoldie · 30/03/2021 00:30

It’s not just the forgetfulness, it’s the whole personality change, which they are able to ‘hide’ completely from friends and family. Only those people who are very, very close (partners, carers etc), can see what’s going on, and the associated aggressiveness. It’s a horrible, horrible disease, and very stressful for those dealing with it.

FlipFlapFlop1980 · 30/03/2021 02:52

I'm starting to be concerned about my Dad who is in his mid 70's. He has rung me up and asked about how to defrost some food. Then, a few months later he needed help with putting a new person's contact details into his phone. These are things he would never normally struggle with.

I'm getting a bit concerned as his lifelong politics has taken a massive about turn too. I never, ever thought he'd ever say that he's voted for the other side, so to speak.

He keeps giving me and my siblings stuff that he's clearing out. Things like DVDs that we don't really want but politely accept.

The rest of the time, he seems fine.

He says he is struggling to cope with his partner becoming very forgetful and needing lots of care. I haven't noticed a bit change in his partner though.

Any advice would be appreciated.

GETTINGLIKEMYMOTHER · 30/03/2021 12:55

@Tejutas, it almost certainly won’t be denial as such - he simply won’t be able to remember at any given moment, that he can’t remember anything - if that makes sense!

The day it really hit me that my DM really did have dementia and not just old-age forgetfulness (we’d been through it all with FiL so I was trying to kid myself) was when she phoned her bank about something - she’d always been very clued up about finances - and could not remember, literally the instant she’d put the phone down, what they’d said.

Normally any such incident would have had her in a terrible tizz - she was always a worrier - but within maybe a minute she’d forgotten it completely.
So a mixed blessing, in a way.

Interested in this thread?

Then you might like threads about this subject:

Tejutas · 30/03/2021 15:03

[quote GETTINGLIKEMYMOTHER]**@Tejutas, it almost certainly won’t be denial as such - he simply won’t be able to remember at any given moment, that he can’t remember anything - if that makes sense!

The day it really hit me that my DM really did have dementia and not just old-age forgetfulness (we’d been through it all with FiL so I was trying to kid myself) was when she phoned her bank about something - she’d always been very clued up about finances - and could not remember, literally the instant she’d put the phone down, what they’d said.

Normally any such incident would have had her in a terrible tizz - she was always a worrier - but within maybe a minute she’d forgotten it completely.
So a mixed blessing, in a way.[/quote]
I see. Yes, that does make sense.

SprungisSpringYaY · 30/03/2021 21:52

Honestly op? I've had it in my family and I worked in a care home with residents suffering..

I wouldn't put a dog through it. Sorry its in humane and we need to start talking to people whilst they are fit and well, at what stage they would like to go at.
We arwNot civilised and making people go into the bitter end with this cruel disease is not civilised.

EveryoneRevealsThemselves · 30/03/2021 22:10

Thank you for this thread. This is what we’re facing with my mum. she hasn’t got to the point of needing to be put in care, but the speed of her decline is so fast that I’m terrified we’ll have to face it very soon.
@SprungisSpringYaY I completely agree and what’s more, having seen And cared for her parents going through It, I know that my mum feels very strongly about being “put out of her misery”. Knowing that, I feel like I’m going to end up letting my mum down even more than I already feel I am. But I don’t know if there’s even an answer or alternative I could even find for her. Even just typing this post out has me nearly in tears about this.

SprungisSpringYaY · 30/03/2021 22:19

Everyone, you can't help your mum, you can make her comfortable...

It's us collectively as a society need to come up with safe ways to end life with dignity and without fear.
I know right now at what stage I would like to be put out of my misery.. When I don't recognise anyone, I can't care for myself.. I'm vulnerable.. I'm terminal.. I'd like to go please!!

EveryoneRevealsThemselves · 30/03/2021 22:22

That’s exactly how I think and feel, sprung, and I know it’s the same for my mum.
There has to be a better way than this.

FizzyPink · 30/03/2021 22:29

@SprungisSpringYaY in your own experience, how long do people tend to live with Alzheimer’s post diagnosis if their bodies are working well?
When my grandma was diagnosed 6 months ago, you could barely even tell there was anything wrong but in the last few weeks she seems to have really rapidly declined and I think we might be looking at a home sooner rather than later.

She called me 3 times today in the space of 15 minutes with no memory of the previous calls, each time to ask me to pick her up from the hairdressers tomorrow. She obviously hasn’t been to the hairdressers in months but had no idea about them being closed and was convinced her weekly appointment was going ahead so it’s starting to be quite dangerous for her to be out and about on her own.

AbbieLexie · 30/03/2021 22:41

This is such an important topic. Sadly I have experience. Very very distressing. I actually couldn't answer this earlier as I found the memories so distressing. It wasn't all bad. My partner is a specialist in Dementia Care. He felt he was educated by our experience and we were fortunate. Pain - people with dementia don't experience pain as we do - its forgotten! My partner would come in for work and I would be standing in the kitchen with the tears running down my face - it would just happen again & again. He felt very strongly that my uncle hadn't died - he was still with us - Me - no! its not my U?. It just wasn't him. We had a relationship but it was different. We went away on holiday for 2 weeks and the deterioration in his cognition was so marked. For the next 3 years we only ever went away for a maximum of 5 days. He knew my name when others said it but when he saw me - I've no idea who he thought I was. Always utterly delighted - like all the lights had been lit - whenever I visited.

EveryoneRevealsThemselves · 06/04/2021 13:58

I came across this article in the Guardian today and thought it might resonate with a few of us on this thread.

www.theguardian.com/news/2021/apr/06/letting-go-my-battle-to-help-my-parents-die-a-good-death?CMP=Share_iOSApp_Other

Dowser · 06/04/2021 14:10

@HandyBendySandy
Thank you that was beautifully and eloquently written and pretty much sums up my experience with my mum also
Whom I eventually had to let go into care aged about 83/84
She lived till she was about 2 weeks off her 88 th birthday

There was no little old lady about my mum..she would get angry, rampage about not all the time but if she felt like something upset her
She just hated being there really.

I also had my aunt in other home with same illness.
It’s just awful and still very painful to write about
The last sister is in a care home in London and it’s been awful for my cousin trying to see her beloved mum

Why Alzheimer’s does not get treated like any other illness on the nhs I don’t know
As she has a modest house, it’s costing her £6000 a month to be cared for

Dowser · 06/04/2021 14:14

My mum couldn’t speak towards the end
In her last hours she looked like she was reaching out to someone or something at the end of her bed
I was praying she’d turn her head to me and say my name one last time
Sadly that never happened

Just thinking of it makes me cry
The one person who always, rain, hail or shine..had my back.
From start to finish..about 8 years

Dowser · 06/04/2021 14:28

@GETTINGLIKEMYMOTHER

One thing I should have added, the Alzheimer’s Society Talking point forum, for carers of people with dementia, was an absolute lifeline for me. There aren’t often any easy answers, but whatever you’re going through, someone will have been there and will know exactly what it’s like. People who haven’t lived with it usually don’t have a clue, but may often think they do, and their ‘advice’ can be profoundly irritating!

One thing I wish I’d worked out sooner, is that if someone with dementia has got some fantastic idea into their head, it’s no earthly use reasoning with them or trying to use logical argument. They will be utterly convinced of it, so if they had tea with the Queen yesterday, all you can do is say, ‘How lovely - were the cakes nice?’

It’s only a problem if it’s something that’s distressing them. My poor mother once became convinced that she and her cleaning lady had taken my father’s dead body to a graveyard many miles away, and just dumped it.

She’d had a dream, triggered I’m sure by something on TV the night before, and although I’d been there when my DF died, and was there at his funeral (he was cremated) nothing I said could convince her - nor could her cleaning lady - she was dreadfully upset and inconsolable for at least 48 hours.

In hindsight, what I should have said straightaway was that it was Ok, no need to worry, we knew all about it and he’d been buried properly now.
This is the sort of thing I mean.

Yes I recommend the Alzheimer’s forum too Was a lifeline for me also

I visited mum in her early months in the care home
Where my mam she said
I said she died, can’t you remember
My mum was so distressed, I never ever said that again.
Was like dealing with an 8 year old
Well who is going to look after me she said 😢

I used to say she was at work, at the shops anything but dead after that.

I also did not tell her her sister had died..no point upsetting her

Very early on before she went into the home..she completed erased my dad
They’d been married 45 years , very happily and when I asked her who he was..she hadn’t a clue
Never spoke of him again.

It is so sad.
My dad went at 70
Total shocker but so much better than what my lovely mum had to endure.

New posts on this thread. Refresh page