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

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To say dementia is fucking shit

71 replies

Toffeesgirl · 26/04/2025 22:52

I lost my Mum to it a few years ago and now I'm losing my Dad.

its an awful, awful disease, it turns wonderful people into absolute shells of themselves, diluting them day by day,

It is SHIT!

Thats all.

OP posts:
Danikm151 · 27/04/2025 00:24

It’s horrible because when they do pass away it’s like you’re in a state of mourning twice.
relief that the suffering is over but grief over the person you loved even though they faded a long time ago.

I lost my Nan a few weeks ago- around 6 weeks before she passed I went to visit her and she looked at me and said “I’m your Nanny” and smiled - I bawled my eyes out afterwards. That was the first time she had acknowledged who I was directly in years.

Dementia is shit- family feels helpless and we have no idea how our loved one feels because they lose the ability to express it.

NorthernDancer · 27/04/2025 00:30

We've been through it with DH's DGM and his DM. Now his DAunt has it and DH himself is becoming forgetful and unable to do lots of things he used to do. I'm terrified

Londonismyjam · 27/04/2025 00:49

randomchap · 26/04/2025 23:46

It's fucking shit

My heart goes out to you

Get all the support you can

What support is there?

Londonismyjam · 27/04/2025 00:52

Don’t mean to be blunt, just can’t see what’s out there.

HeddaGarbled · 27/04/2025 00:55

Just a little possibility of hope: my dad died of Alzheimer’s and it truly was shit - he was distressed and aggressive for many years. However, my mum is also dying of Alzheimer’s and actually, she’s pretty chilled. She’s in her own little world but she doesn’t seem unhappy there.

CarpeVitam · 27/04/2025 01:06

Sending you 💙, OP. It’s is truly awful disease x

Justlovedogs · 27/04/2025 01:06

Sending hugs, @Toffeesgirl. Lost my DM, DF and DFIL to dementia and it is shit.
Can't imagine who is saying YABU on the poll.

EricTheGardener · 27/04/2025 01:07

Danikm151 · 27/04/2025 00:24

It’s horrible because when they do pass away it’s like you’re in a state of mourning twice.
relief that the suffering is over but grief over the person you loved even though they faded a long time ago.

I lost my Nan a few weeks ago- around 6 weeks before she passed I went to visit her and she looked at me and said “I’m your Nanny” and smiled - I bawled my eyes out afterwards. That was the first time she had acknowledged who I was directly in years.

Dementia is shit- family feels helpless and we have no idea how our loved one feels because they lose the ability to express it.

Oh god that would've ended me.. how wonderful she had that moment of clarity before you lost her though.

EricTheGardener · 27/04/2025 01:18

@Toffeesgirl you're not wrong, and I'm sending you so much strength to get through it. It is the absolute pits of the earth. Lost my dad to Lewy Body Dementia, which is a bit different to other types of dementias as the main feature is that it fluctuates. So although the overall trajectory was downwards, my dad would go in and out of his demented state, and when he was lucid, he'd realise he was wearing incontinence pads and say things like 'what is happening to me, it's so degrading' and start crying. It was absolutely unbearable.

Now my mum, a sparky widow of eight years, is starting to forget things and repeat herself and be adamant that conversations we had a few hours previously never happened. It's just too terrifying and depressing to think about, so I try and block it out.

One thing I will say, which I know sounds dark, is that occasionally there will be funny moments and you just have to take them while you can and not feel guilty about laughing. My dad thought Theresa May had written to him instructing him to wear frilly knickers, he told an elderly neighbour he was going to take his trousers off and she was welcome to 'get an eyeful' (he was the straightest, most upstanding man you ever met) and thought it was hilarious to fart out loud in hospital waiting rooms.

But overall, yes, it was the worst time of my life.

Edited to say: sorry misread your post; you've already been through this with one parent so you don't need me to tell you how it is 💜

Cosycover · 27/04/2025 01:33

Yeah it's awful. My friends mum had dementia in her 40s when my friend was only in her 20s. It was truly heartbreaking.

TheFirstFemalePope · 27/04/2025 01:51

It is an incredibly cruel disease. My mother is disappearing before my eyes, bit by bit. And I know that's only going to get worse, and then she will die.

My working life gives me additional glimpses of it. I am a musician and I have regular slots performing in nursing homes. It is astonishing how music reaches people long after other things have fallen away from them. I even have conversations with residents who do not otherwise talk, but they talk when they hear music. I had one resident - a musician also - who was able to talk about harmonic progression when engaged. Lots of people sing along which is remarkable for people who cannot follow speech.

i have other matters to attend to when I'm with my mum but I do try and play music for her too, which may seem frivolous, but I think it does help.

Mostly though, it is a long, slow, exhausting hell.

Danikm151 · 27/04/2025 02:36

@EricTheGardener yes- you cling to those moments of clarity.

It broke my heart to lose her

4catsaremylife · 27/04/2025 02:46

@Toffeesgirl I totally agree my lovely dad is lost to Dementia and it breaks my heart every time I visit him in the nursing home. I'm so sorry you are going through this.

EnhancedVampireEyeballs · 27/04/2025 02:57

HeddaGarbled · 27/04/2025 00:55

Just a little possibility of hope: my dad died of Alzheimer’s and it truly was shit - he was distressed and aggressive for many years. However, my mum is also dying of Alzheimer’s and actually, she’s pretty chilled. She’s in her own little world but she doesn’t seem unhappy there.

Yes, it's not always awful for the person suffering with it. My Nan was pretty content, she got to a happy place where she could just roll with it. I mean there were some weird moments, her very earnestly telling me how she'd killed a calf and dug a hole and buried it being a memorable one.

I've worked in a care home, and in training we were told that if a resident with Alzheimers or Dementia was off if fantasy land, it was best to just go with it. And I've seen that play out, they were usually happy and in a peaceful place.

CrocsNotDocs · 27/04/2025 03:28

It is awful. My MIL fell into a coma a month ago and we were given the end of life chat. I was so relieved- what a good time to die, when you can still just remember your immediate family, are not yet incontinent and still getting occasional pleasures out of life.

But she rallied. She would be absolutely furious if she was herself- we used to have great chats about her future and mortality in a way a MIL and DIL can that a mother and children can’t because they get too upset.

Vcal2017 · 27/04/2025 03:54

PluckyBamboo · 27/04/2025 00:12

100%, we're heading to the end of MIL's 5+ (probably 8 in reality) torturous journey now, she is nothing but a shell with a functional cardio-vascular system.

Thats such an astute way to describe it. My Dad is in Year 3. Some days he’s positively chatty, others he sleeps for 18 hours a day only to walk the halls at night wanting to return to his Mum and Dad. I can’t wait for it to be over.

Dorisbonson · 27/04/2025 05:13

The awful thing many older people go through whether it is dementia or another illness is caring for a loved one with a long term sickness without the hope of improvement and knowing it will only get worse.

Dementia is an awful illness.

hattie43 · 27/04/2025 05:29

My mum is 81 and the last couple of visits I really know she’s started on a downward trajectory. Very forgetful , muddled speech , same conversations happening , same question asked despite asking 5 mins before accusations, not sure about the spite and aggression because she’s always been that way. We’ve had a terrible relationship over the years and she’s been a rotten mother so I will be leaving her to it . She’s ruined my childhood , young adulthood and now I’ve just retired she won’t be ruining the last phase of my life . Good luck OP it is a frightening disease .

TheCountofMountingCrispBags · 27/04/2025 05:40

It is. I'm so sorry you're going through this a second time.
I'm in a similar position, and the distress it is causing my parent is heartbreaking. They know they are 'not right', know my name, but not our relationship. I'm just a random person.
Cancer and dementia are largely diseases of old age. There's a reason we have a natural timespan, but we all want to live longer, want our loved ones with us longer, so we have extended life-spans. Pneumonia is no longer the old persons friend.

TheCountofMountingCrispBags · 27/04/2025 05:45

We need a hug emoji.
Sending you all a massive virtual hug.

careerbreakheaven · 27/04/2025 05:48

One of my DDad’s symptoms is asking the same question 30, 40, 50 times a day. He won’t watch telly, doesn’t want to read or do anything other than sit and ask the same set of 5 questions repeatedly. It’s so hard, I have to try so hard not to get irritated by it. He was such a capable man in his day; received an OBE for his work. It’s such a cruel disease.

I bloody hate the advert on telly for one of the dementia charities that talks about dying a death more than once during dementia

moanyhole · 27/04/2025 09:46

Lost my MIL to dementia last month. It was a relief and I feel so guilty saying that. She was a shell of her former self.

My SIL is now in a nursing home with frontal lobe dementia. She is only 57 and it is heartbreaking. She doesn't recognise any of us anymore. It is particularly cruel when it hits somebody so young.

TwistedWonder · 27/04/2025 09:55

My dad just asks the same questions over and over again and looks totally confused whatever I answer.

And he’s got a routine he obsessively follows and gets stressed out if anything changes that.

I took my parents out for lunch Easter Monday and it was like having a toddler. I feel so sad for my mum having to live like this now after a 60 year marriage.

I do fear if anything happened to my mum because he couldn’t cope a day on his own. Sorry if this sounds selfish but for our whole families sake, I hope he does go before mum because she would be ok with our support but him left alone I can’t imagine

Lookingtomakechanges · 27/04/2025 09:57

It’s the worst disease I can think of and the one I dread most for myself and loved ones. Great sympathy to anyone suffering from it now.

lljkk · 27/04/2025 09:59

MN could use a "sending hugs" emoji