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AIBU?

To ask for positive dementia stories

251 replies

Doughnut100 · 01/01/2024 23:03

Surely there are some people out there whose parents got it, they took care of them and dealt with the whole situation, they eventually died, and it wasn’t utterly harrowing?

My mum has it. (We have lasting power of attorney, I know that’s the thing people always say you need.) She is not your average old person, she runs a business, has hobbies, more of a social life than most of my friends. She never sits down, never watches tv, always thinking, doing, opinionated as hell, won’t be told a thing. Already as mad as a box of frogs, never mind that she can no longer remember anything.

I’m just waiting for the sh*t to hit the fan and wondering if there is any way it might just be ok. Hoping she can stay at home without any major calamities until she’s bad enough to not really know what’s going on, then she will need a nursing home and hopefully there are nice ones out there.

Am I just in denial and deluding myself? Or has anyone experienced this and managed to get through it thinking it wasn’t the worst?

I am sorry in advance for your losses - I am asking people about their parents dying and I do not mean to be flippant about that. Really sorry if this makes anyone feel sad. I’m sad too.

OP posts:
Workworkandmoreworknow · 01/01/2024 23:14

It is hard, OP. Really hard. Read up on it, particularly about handling it as in the early stages, I often upset my mum by handling things badly. It is harrowing as an overall experience, to see someone you care so deeply about so confused,m angry, upset. My mum stayed at home until I could no longer kid myself she was safe - hallucinations had her arguing with strange men at 5 am and her wandering the streets in her nightwear with the house left unsecured. She lasted 10 months in the care home. I felt every emotion going - shouldn’t have put her there, should have looked after her myself - but it was the right thing to do. There comes a point where they need 24 hour care and unfortunately that is usually while they are still mobile. We do remember her confusion with fondness - the dancing men in the garden provided her with much amusement but the dodging the bombs and crying on the floor in the hospital, not so much.

CautiousVisitor · 01/01/2024 23:14

My grandmother has dementia, she has now been in a care home for five years, probably seven or eight years from diagnosis. She certainly had it before that, looking back.

It was getting hard towards the end of her living at home. She did unsafe things and was stubborn about resisting help (and visiting carers can't insist e.g. on assisting to shower, and aren't around all day to wait for a more amenable mood). It was also hard when my grandad was still alive because her dementia expressed itself as paranoia / anger towards him.

She has been in a few different homes before landing on the one she is in now. The right home for her has made a huge difference. She is mostly living in a dream world these days and recognises family inconsistently but she is very happy. I don't know what the progress / decline might be from here but right now she is happy.

TheShellBeach · 01/01/2024 23:18

It gets much harder once they can't walk, can't remember to go to the lavatory, and refuse to get washed.

It gets harder if they become aggressive.

Incontinence is the big killer (for you as the relative).

Then they forget to take their tablets, or wander off in the middle of the night.

Eventually they forget to eat and drink.

LargeSquareRock · 01/01/2024 23:18

Get her into a care home sooner rather than later, while she has enough capacity to settle in and have the routines imprint on her. I cannot stress this enough.

I have never heard a positive dementia story. So sorry.

TheScenicWay · 01/01/2024 23:19

We think my mil has the onset of it. I've researched the hell out of it and wiling to try all the supplements people suggest. Coconut oil, vitamin d, vitamin b1 all seem to come up so we're trying that.
I'm so worried.

saltinesandcoffeecups · 01/01/2024 23:21

Not Dementia but end of life with cognitive impairment. Whatever step you are at plan 2 steps ahead of that. By the time you enact the plans you have, she’ll have moved to the next one. I agree with a previous poster… get her in a care facility now. It will be better for the both of you.

Doughnut100 · 01/01/2024 23:23

@CautiousVisitor can I ask how you found a good care home and what are the things to look out for

@LargeSquareRock i will have to fight her in there kicking and screaming. You have never met a person less suited to an institution. She will want to be in the forest felling trees. I just can’t see how unless she has completely lost it.

@TheScenicWay I’m so sorry. I’m worried too. That’s why I’m on mumsnet after bedtime asking strangers to tell me it’s going to be alright when I suppose I know it’s not.

OP posts:
StBrides · 01/01/2024 23:23

LargeSquareRock · 01/01/2024 23:18

Get her into a care home sooner rather than later, while she has enough capacity to settle in and have the routines imprint on her. I cannot stress this enough.

I have never heard a positive dementia story. So sorry.

Before care homes...get her used to having carers. Start arranging for them to come regularly for support- even if from your mum's point of view its just for company/a chat/a check in. That way they're there to help out with developing needs and means your mum gets used to them early, making them feel less threatening and less of a loss of independence

Ghostwritersinc · 01/01/2024 23:23

I don’t think there is an easy way to say or hear this, but dementia is awful.
it will vary on the type and severity, but no, I don’t think many people will have positive stories.
one day I may look back with fondness at some stories, but mostly it’s heart breaking to see relatives this way. Sorry.

Danikm151 · 01/01/2024 23:24

Accept any help you can get.
My Nan has been in a care home for 3 years now and it was the best thing for her and for the the family. Caring for a relative with dementia can really take its toll on you.
Now we know that Nan is in a safe place, we can visit her and she’s mostly happy when we do- she doesn’t always know who we are but at the home she’s clean, eats well and her mind is stimulated. It allows you to be family rather than battle to be a care giver to someone who refuses help. Her medical needs are attended to as well. She doesn’t remember being a diabetic and what meds she needs so the nurses there remember for her.

HandsomeGreta · 01/01/2024 23:27

Some care homes specialise in Dementia date and are excellent. A quick Google should help locate. Add to waiting lists early. Try respite when it’s nearing the appropriate time for that level of care. We did this and DM never returned to her flat. Much happier and healthier. Put on all the weight she had lost, no more days alone. It’s a lovely place.

Jumpingpogosticks · 01/01/2024 23:27

Because it seems like your mum is so on the ball, despite diagnosis the likelihood is that you will find her decline is different to the decline of someone who has lived vastly differently to her.

I knew a lady who had dementia and didn't die in a care home, she had some carers come in each day, and lived in a supported living space so she was still doing quite well.
Well enough that her family would say "Mum, if you don't do x/y/z we will need to put you in a home, no one wants that, do they? " and things would change for a short period.

She was often confused, but strong willed, and seemed to still enjoy her life to some extent right until the end.

Her family, especially her daughter were very hands on in her care though.

On the other hand, my FIL has allowed himself to get to the point he won't make himself a cup of tea, his only exercise is to walk to and from the toilet. His dementia is kuch less advanced than the lady I mentioned above. Has no hobbies as he no longer has a driving licence or allowed to keep a gun, except for sitting in front of the TV for 12 hours a day.
Refuses to do just about anything else, despite having been told that he needs to try and keep active.

Keep her active OP, especially mentally. It will help.

TheShellBeach · 01/01/2024 23:30

I was a specialist dementia nurse and I can't think of a single positive story.

Tacotortoise · 01/01/2024 23:32

It wasn't entirely harrowing for my father (except maybe the last few months) just relentlessly sad. But he declined very slowly, and always knew who we were. If your lo will accept carers (my father was extremely resistant ) then so much the better. If they aren't, keep trying periodically.
Aim for quality of life, not quantity.

My father was determined to stay at home and die there and we were able to support him with that. But what's possible depends so much on individual circumstances, it is neither possible or best for many people.

Catinaboxx · 01/01/2024 23:32

I am sorry OP. Except for worst hope for the best. 💐💐💐

Before my Nan got dementia I naively assumed (I was 18 tbf) it was just cutesy being forgetful and a bit batty. That’s what it started as

I was not prepared for her losing control of her bowels, being unable to walk and talk. Similar happened with my friend’s Grandad.

That aside everyone is different and if she remembers to take meds it can slow it down.

OP just take each day as it comes. You can do this. I just want to say that if she does go my nan’s way, please still talk to her. You don’t know what they are taking in.

The last time I saw my nan before she died, she had been non verbal for months. I said bye love you and she said “love you” back. 😢

SkaneTos · 01/01/2024 23:32

I agree with @StBrides . Good advice.
Help your mother get used to having carers. In the beinning they can be just like friendly people stopping by. Eventually, when she needs more help, she will be a bit used to them already.

Tacotortoise · 01/01/2024 23:33

Jumpingpogosticks · 01/01/2024 23:27

Because it seems like your mum is so on the ball, despite diagnosis the likelihood is that you will find her decline is different to the decline of someone who has lived vastly differently to her.

I knew a lady who had dementia and didn't die in a care home, she had some carers come in each day, and lived in a supported living space so she was still doing quite well.
Well enough that her family would say "Mum, if you don't do x/y/z we will need to put you in a home, no one wants that, do they? " and things would change for a short period.

She was often confused, but strong willed, and seemed to still enjoy her life to some extent right until the end.

Her family, especially her daughter were very hands on in her care though.

On the other hand, my FIL has allowed himself to get to the point he won't make himself a cup of tea, his only exercise is to walk to and from the toilet. His dementia is kuch less advanced than the lady I mentioned above. Has no hobbies as he no longer has a driving licence or allowed to keep a gun, except for sitting in front of the TV for 12 hours a day.
Refuses to do just about anything else, despite having been told that he needs to try and keep active.

Keep her active OP, especially mentally. It will help.

This is such an ignorant post I have no words.

StBrides · 01/01/2024 23:35

TheShellBeach · 01/01/2024 23:30

I was a specialist dementia nurse and I can't think of a single positive story.

My own family experiences of dementia aren't positive. Ime the struggle is very much about the sufferer not realising / recognising/ denying that they are not capable or independent and trying to do things which are unsafe for them.

I agree that the positives, as much as they are, are found in being proactive - planning ahead, putting in support for you and them early and ahead of time/before it's needed, recognising when you need a break (and they need a break from you). Finding new ways to communicate with them, entertain them.

It's bloody hard.

TheShellBeach · 01/01/2024 23:38

.......and trying to do things which are unsafe for them

Apart from the incontinence, trying to stop them doing unsafe things is a terrible, wearing and exhausting battle.

OvertiredandConfused · 01/01/2024 23:39

My MIL was independent for a long time post-diagnosis. She declined very suddenly about 2.5 years ago and we had hell for 6-9 months getting her into the right care home - made worse by needing to move to another local authority area to be near us.

The bureaucracy is hideous. My top tip would be to keep asking / referring to what is in her best interests. Ask social services, mental health nurses, GP, psychiatrist etc why they think x rather than y is in her best interests - that’s not the same as usual / cheapest / easiest.

Once she was in the right place, it became easier. She now needs nursing care and we were glad we picked a home that offered that too so no need to move her.

She is now doubly incontinent, largely non-verbal and doesn’t recognise anyone (but can still point to the picture of an ice cream with raspberry sauce to indicate her preference).

The worst bit for your mum will be the middle bit when she is aware it is impacting her life. The later stages will be worse for you.

If she still has capacity, talk to her about her wishes - including end of life and funeral. I know that sounds awful, but I promise being aware makes it slightly less difficult as you reach those stages than having no idea what she would want.

Sorry you are facing this.

ThreeLocusts · 01/01/2024 23:41

My mum's partner had it, as did a friend's stepmum and now her dad, and my MIL.

It's always hard. Don't try to keep her out of a care home if it's getting too much.

One thing - people seem to change (or not) temperamentally in very different ways. Mum's partner went from unpleasant to absolutely nasty, friend's stepmother from catty to very sweet. MIL remains pleasant, friend's dad has gone from bossy to impossibly cantankerous. I hope you get lucky. Flowers

Doughnut100 · 01/01/2024 23:43

Oh god you have no idea. She wants to drive long distances and use heavy garden tools.

OP posts:
StBrides · 01/01/2024 23:43

Some things make dementia temporarily worse, too. It's not what you asked but its worth knowing about.

UTIs are a big one...Can be difficult for dementia patients to get enough fluids. If your mum suddenly seems like her dementia has advanced overnight then have her tested for a UTI.

Unfamiliar surroundings and experiences are another. My relative is noticeably worse when out of their home environment, it really disorientates them.

Establish consistent and familiar routines as early as possible.

StBrides · 01/01/2024 23:45

Doughnut100 · 01/01/2024 23:43

Oh god you have no idea. She wants to drive long distances and use heavy garden tools.

I hope she's not driving at all anymore?

If she has an accident, even at this early stage, she'll be in for it. She needs to give up her licence now she has a diagnosis.

Carers can help with gardening safely and there might be a community garden near her where she can garden in a safe and supported environment

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