Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
Thread gallery
6
Hmmph · 02/01/2024 12:20

I think the answer is there are no positive dementia stories. It always goes one horrible way. BUT when it is your relative you can find (and cling to) tiny positive moments. In my opinion and experience, finding these little breaks in the clouds is the only way to cope as a carer/child.

SweetChilliChickenWrap · 02/01/2024 12:26

I bought Contented Dementia on recommendation.

I found it an awful book full of assumptions and stereotypes.

Fine if it just happens to fit the way your mum, dad, whoever has dementia, but terrible if they present in any of the hundred thousand other ways.

The book presumes a one size fits all.

I was so horrified by some of the things I was reading that instead of putting it in a box for the charity shop I ripped it up and it went in the recycling.

SweetChilliChickenWrap · 02/01/2024 12:34

If anyone heads to Amazon for Contented Dementia, please read the eloquent 1 and 2 star reviews which highlight the problems with it.

Cattenberg · 02/01/2024 12:35

Both of my grandmothers had dementia. One had Alzheimer’s and the other had a different kind (possibly vascular?) which lasted for decades.

They both went through bad times, but overall, it was nowhere near as bleak as people tend to say. I honestly believe they were happy and contented most of the time.

Both went through phases where they were struggling to manage at home, but reluctant to move into residential care - that wasn’t fun. My grandmother who had Alzheimer’s became touchy, paranoid and sometimes aggressive - she had the delusion that everyone around her was trying to steal from her. For example, she was convinced that her neighbours were trying to steal her washing.

Both of my grandmothers settled well into residential care. I suppose their abilities declined somewhat, as they had less to do, but the pressure was off them and they seemed much calmer and happier. They made friends and enjoyed the activities provided by their homes.

My older grandmother, who had an undiagnosed type of dementia, spent about eight years in residential care. A few years before she died, she went through an unhappy phase lasting several months during which where she refused to get out of bed, and would hit her carers when they tried to get her up. We thought she must be nearing the end, but surprisingly, she got past this phase and regained some kind of normality.

A couple of weeks before my younger grandmother died (aged 82), my mum and I went to visit her. We looked through an old family photo album together and my grandmother really enjoyed this, even though she was a bit confused about who we were. At one point she said, “oh, it’s so nice to have old friends together!” Later she seemed concerned about me, and held my hand. “Will this little fellow be all right” , she asked anxiously. “How will he get home?” Mum reassured her before we left.

The last time I saw my grandmother, she was ill with a UTI and fast asleep. My other grandmother also died peacefully from a UTI. Neither reached the stage where they couldn’t walk or talk, although my older grandmother rarely spoke in full sentences towards the end of her life. At one point, she said “well, well, well” and my Dad replied, “three holes in the ground”, which made her laugh. That was a rare moment where he felt he connected with her.

My only advice, for what it’s worth, is to accept that people with advanced dementia go into a new state that is somewhat childlike. Sometimes they will assume they are in an environment from their younger days. For example, a retired teacher may think they are in a school and in charge of the class. A retired removal worker may think they are on a job and pile the furniture up in the middle of the room.

It’s generally agreed that it isn’t helpful to a dementia patient to argue about this, so try to step into their world with them (as we often do for children enjoying pretend play). “It’s break time/ time for a break” can be a very useful phrase.

Distraction also helps. For example, if the person with dementia is upset that one of their relatives died several years ago, I would acknowledge their feelings, then divert the conversation on to something else entirely by showing them a new object or photo. One of the few blessings of dementia is that people with it often get to bypass grief somewhat.

HurryUpSpringDays · 02/01/2024 12:38

I don't know what help I can give.
My father died from dementia but he also had other health issues (kidney failure.)

He was 93 and diagnosed 2 years earlier.

You need to inform DVLA and have her driving licence cancelled.
We had to force my father to stop driving (lied and said the car needed work doing to it) and he stopped driving at around 90 just before he was diagnosed with dementia.

My father lived 'ok' with dementia until roughly the last few months.
His personality changed, he became either very withdrawn or aggressive. His worst traits came out (being controlling) but then he'd cry and say he was sorry.

My mum looked after him (she was a year younger.)

The biggest issue for him was mobility.
He had a type of dementia akin to Parkinsons. He became almost unable to walk without falling over , and often didn't make it to the loo in time.

His life ended when he has a fall, was taken to hospital for 2 weeks (supposedly to get his mobility back which was a joke), he faded away, and never came out.

My father was fiercely independent. He refused carers or to go to clubs for people with dementia. There is support out there and you might find it very helpful.

SweetChilliChickenWrap · 02/01/2024 12:42

Here is a review which also highlights some of the Alzheimers Society reservations about the approach advocated in Contented Dementia.

Age Watch Review

From the review:

The Alzheimer’s Society for instance, recognises merit in the emphasis on the value of good communication and the need to evidence-base what works best. However, it also raises a number of serious reservations. The recommendation not to ask questions is seen as, ‘contrary to all that is enshrined within the Mental Capacity Act,’ because it takes away choice and control from people with dementia; and the review concludes, ‘It is just one psychosocial intervention in the therapeutic toolkit and, as with many interventions that have aspirations to be a 'model', it is flawed.’

Contented Dementia - Age Watch

Contented Dementia – Oliver James

https://www.agewatch.net/tackling-obesity/contented-dementia-oliver-ja/

Jumpingpogosticks · 02/01/2024 12:43

KimberleyClark · 02/01/2024 10:24

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.

It’s the illness, it makes some people very passive. It’s not that he won’t make himself a cup of tea, it’s that he can’t. He no longer has the memory of how to do it. My mother was like this.

He can, and left to, does.
He however has never felt that he should do anything if there's anyone else in the house to do it for him. This was him for a long time before diagnosis, which has just got worse.
If he doesn't have MIL, myself or DD to make him a drink, make him lunch, or generally run about, miraculously he does manage to not only make a cup of tea, but also make himself a hot meal.
Because he's always (even in his 40s and 50s) been a man who thinks that women should run around after men, and he was waited on until he got married by his mother, and MIL took over after that, and he's always done things his own way, now he can't take part in his hobbies, he doesn't move from his chair.
He only moved from his chair for the things he actively wanted to in better health.

People seem to think that people don't let themselves get to that state- but the relationship board is full of men who are like FIL in his younger years. Don't pick up after themselves, don't cook for themselves, wouldn't dream of putting on a load of washing, don't really contribute to the house other than financially, and go out to do their hobbies. But as old age creeps in, and they can no longer take part in their hobbies, they don't do anything, because their hobbies were all they were doing before that.

They wont miraculously lose their driving licence and suddenly decide that they should make themselves a mug of tea when they can demand their wife or DIL will do it.

His specialists have confirmed that the amount he actually does, doesn't align with the outcomes of his assessments they've recently just put him through again. This is across the board- confirmed by a few different specialists he is under.

He has the ability to do more than he does, but chooses not to and refuses any options put to him to get him doing more.

HurryUpSpringDays · 02/01/2024 12:46

She DOES need to see her GP and be referred to a consultant.

There are drugs now that can help especially with younger people.

There are also 4 types of dementia and all develop differently and need different treatment.

My personal view is my father's was misdiagnosed as vascular dementia, but since reading up on it, I think he had Lewy Body dementia because he ticked all the boxes. The medical info online says this is a type very hard to diagnose, even for specialists.

I think that was the case.

His main symptoms were hallucinations (imagining people outside, making up stories over what he could see and hear, like people banging on windows) which we learned not to argue over and just play along with him. His sense of time went and he'd get up at night thinking it was morning and start cooking.

Everyone is different but I imagine if your Mum is young(er) you really need to push for an assessment at a memory clinic (the first step) then a neuro brain scan and see what they show.

Listentogold · 02/01/2024 12:48

Dm was diagnosed just before covid. Until then she was a social butterfly hardly stayed in. Lots of holidays, days out etc. Then covid made it worse. I lived over 20 miles away and wasn't allowed to go and visit. Older brother got her shopping etc as he was only around the corner.
When lock down was lifted we got her into a care home pretty quick as both me and brother were diagnosed with cancer.
She settled very well. Unfortunately she fell out of bed and broke her hip.
This was the beginning of the end and 4 months later she passed away.
Don't know if it was the dementia or the shock of her hip that killed her.

HurryUpSpringDays · 02/01/2024 12:49

Doughnut100 · 01/01/2024 23:47

Oh we don’t have a diagnosis. I haven’t managed to get her to a GP. I never really tried to be fair. I thought the knowledge would be more upsetting while she can still understand. And she won’t want to take the drugs anyway. I know that’s not what most people would agree is best.

How old is she?

If there has never been a diagnosis, you may be jumping the gun.

How do you KNOW it's dementia?
Some women have very bad brain fog and confusion after the menopause so I'd not dismiss that as a reason either.

Saz12 · 02/01/2024 12:58

Positive stories arent something I've heard. But, what age is she? If diagnosed later, with other health issues, then you may find she's not around to experience the later stages of dementia.

NoBinturongsHereMate · 02/01/2024 13:19

as you have POA call her GP

That's not how it works. There are 2 types of PoA. The finance one can be used while the person still has capacity, and in conjuction with the person still managing some of their own affairs. The health one can only be used after the person has lost capacity. Before that, health decisions and will be shared with you only if the person has given consent - not on the basis of the PoA. However, as I mentioned earlier, this doesn't prevent the health professional listening to you; they just can't tell you anything.

bought Contented Dementia on recommendation.

I found it an awful book full of assumptions and stereotypes.

Fine if it just happens to fit the way your mum, dad, whoever has dementia, but terrible if they present in any of the hundred thousand other ways.

I've not read it, but my mum would agree with your assessment. It might be useful for a small number of people in a very specific stage of a particular type and presentation of dementia. But it's completely irrelevant for my stepfather, and would be actively harmful if implemented.

HurryUpSpringDays · 02/01/2024 13:31

I can't stress enough @Doughnut100 how it's not right to jump to conclusions. Your mum hasn't had a diagnosis. You left a similar thread a few months ago asking the same.

You have a baby so you are what age? Under 40? And your mum is what- 60+?
This really could be hormonal . There are plenty examples of women who think they had dementia was it was loss of hormones.

You're not doing her any favours by protecting her from whatever might be going on.

She needs to see her GP and then begin a process of elimination over what is causing her symptoms (and you've not described those.)

Also and sorry if this isn't what you want to hear, your scepticism of pharma and drugs is not really helpful. For younger people with early onset dementia, there is treatment that can slow it down. She has a right to this if she chooses - don't make that choice for her.

You should be encouraging her to get an assessment, not making that yourself. It's very hard to make the call between forgetfulness and occasional confusion, and dementia.

Also, the POA only comes in once she is classed as having no capacity to make decisions. As she's running a business, this isn't yet.

You say you have siblings. As a family, pull together and do all you can to help her see a GP.

Hmmph · 02/01/2024 13:33

Saz12 · 02/01/2024 12:58

Positive stories arent something I've heard. But, what age is she? If diagnosed later, with other health issues, then you may find she's not around to experience the later stages of dementia.

This is another cruelty to the loved one of a dementia sufferer. It gets worse until they die. You find yourself wishing they'll die quickly and painlessly from something else. It the horridist feeling wanting someone you love to die.

blueshoes · 02/01/2024 13:34

moggerhanger · 02/01/2024 08:18

@blueshoes my DM was diagnosed at age 76, and had been showing signs for about 2 years prior to that. Diagnosis was 13 years ago and she is still alive. But has been bedbound, doubly incontinent, unable to speak and feed herself for around 5 years. I swear she'll outlive me.

mogger, that sounds so hard for everyone involved. Flowers

blueshoes · 02/01/2024 13:40

Hmmph · 02/01/2024 13:33

This is another cruelty to the loved one of a dementia sufferer. It gets worse until they die. You find yourself wishing they'll die quickly and painlessly from something else. It the horridist feeling wanting someone you love to die.

These are the thoughts that dare not speak their name.

Sorry for everyone going through this with a loved one. Sad that there are so many of us.

DocOck · 02/01/2024 13:41

This is another cruelty to the loved one of a dementia sufferer. It gets worse until they die. You find yourself wishing they'll die quickly and painlessly from something else. It the horridist feeling wanting someone you love to die.

This. I am desperately hoping for an end and just wish my mum would fall asleep and not wake up. She was relatively young at diagnosis but her decline was fast, however she's been stuck in this late stage for a few years now. It's inhumane really, there is no dignity.

Doughnut100 · 02/01/2024 13:41

She is late 70s. First her short term memory deteriorated ie repeated stories, having to tell her the same stuff every time I saw her.Now it’s to the point she was eating cake and forgot she had eaten soup beforehand. And forgotten memories from when we were young, or how to do things she knows how to do. Totally lucid and physically healthy and fit. Still running a business even though she’s aware of what’s happening. Goes on solo camping trips, long walks. She tries to mask it I think. I’m aware it might not dementia but it’s more likely to be.

so many things I don’t know how to deal with such as she shares a car with my dad who uses it to taxi other family members around who are reliant on him. Stopping her driving without removing the car will be almost impossible.

i will get in contact with the gp and ask them to call her in for a check.

OP posts:
Doughnut100 · 02/01/2024 13:45

@HurryUpSpringDays thank you, I am taking all you say on board.

OP posts:
OneTC · 02/01/2024 13:46

She needs a diagnosis to access the kind of support that can slow it down a bit. Also some of the care and help you get requires it to be an official diagnosis

HurryUpSpringDays · 02/01/2024 13:47

Thanks for the update.

Your GP doesn't have to do as you ask- bear that in mind.
You can discuss her symptoms but it's up to the GP if they ask her to go in.

If you tell your GP about how she is still driving, they might take steps around that. Any medical condition has to be declared to DVLA.
You can also 'report' someone who you think is unsafe to drive.

I didn't realise your dad was around.

What he saying or doing about it all? Why are you taking it on your shoulders when she has a husband?

Bestyearever2024 · 02/01/2024 13:50

My best friends dad was taken to hospital by the police because his dementia made him violent

The hospital placed him in a Nursing Home. There was no choice for him to live anywhere else buy the NH

Because he was away from familiar surroundings the dementia became much worse and he forgot the family home and only remembered his childhood home

Bestyearever2024 · 02/01/2024 13:53

Stopping her driving without removing the car will be almost impossible

The GP can insist that she takes a driving test which she will fail I expect (its taken in another area than the area where she lives)

WillowCraft · 02/01/2024 13:54

StBrides · 01/01/2024 23:45

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

Not true. They let people with dementia keep their driving licence for a surprisingly long time. They have to declare to DVLA and have an annual reassessment. Anyway the OP said there is no diagnosis. It takes months to get a diagnosis

Swipe left for the next trending thread