To ask for positive dementia stories

[Doughnut100]

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.

@SeaToSki , re Health and Welfare Powers of Attorney, FGS while you’re still able, make one for yourself, to state what you would or would not want.

There is space on the forms for you to add your own wishes.

Dh and I have added a paragraph that says roughly, ‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak (with full mental capacity) for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

@HurryUpSpringDays - I think it IS helpful to share 'horror' stories. As a society we tend to brush dementia under the carpet because it's so unpalatable - and terrifying as we all may get it. Families coping with dementia need to understand what may be round the corner so they can be better prepared, plan ahead and find out what support may be available to them (not enough). Dementia is not some steady decline into old aged forgetfulness - it really is horrific.

My mum had LB dementia (we think - she was never properly diagnosed) which came on very quickly following a hospital admission. As a family we had no experience of dementia and had a very steep learning curve. Like not trying to contradict her and bring her back to reality, but to deflect when she said my dad (long-since dead) had been to visit her or my son was one of the doctors (doing his A levels at the time). And to understand hallucinations, confabulation, sundowning etc. I was however totally unprepared for the realisation one day that she had no idea who I was. If I'd have realised that was coming I'd have told her more frequently how much I loved her before she thought I was just one of her carers.
People also need to understand that people can potter along at one stage of dementia and then have a sudden decline. And repeat. It helps to understand this and what might be round the corner. The family that decides to have the forgetful parent live with them should also be checking out potential care homes in advance of the point where they can no longer cope.

But the OP states right from the off that they know they're being overly optimistic and are just asking if there's any silver linings and loads of people are saying well there can be and a few people are saying NO IT'S ALL FUCKING MURDER.

Loads of that is going to depend on what the person doing the caring is capable of squaring away, as well as the experience of the patient. It's been 4 years since my mum started needing constant care and I've done most of it. Other siblings who are less involved are more mentally and emotionally impacted despite less involvement. I don't think there's a relevant one size fits all experience. My dad, who died with a different type of dementia 20 years ago, was a totally different experience to that of my mum

While there are no positive stories there are positive moments. The op has optimistically specifically asked for positive posts. There is a wealth of threads on MN for horror stories, I’ve posted on them myself. This insistence on posting the most negative possible thing about dementia on this thread just illustrates the low regard carers are held in.

My grandmother has dementia. She lived at home with my grandfather until he died a few years ago (at age 95). She lived with a diagnosis for at least 12 years before having to go into care. She had carers in twice a day to sort her medication and that was it. My mum went round hers 3-4 times a week but mostly just sat with them and did a bit of cleaning and sorting. The personality change was very difficult for us all. My mum was under a lot of stress being the main carer, and that wasn't even daily. She's in a home now since my grandfathers death and that has to be the most stressful bit. She lost capacity so had to go through court of protection just to move her to a nicer home. It's really drawn out and stressful. But she's in a nice home now, expensive, but close to my mum and well looked after. It's been difficult mostly for my mum, but also for a good number of years it wasn't all that full on and it progressed fairly slowly looking back. She's now 91, and we have had a good number of years with her still able to remember us all and be a part of our lives. It's gotten much worse now since losing my grandfather but she is very elderly. So a mixed bag, obviously not all happy and cheery, but we all did muddle on fairly happily with some background stress for a long time.

This insistence on posting the most negative possible thing about dementia on this thread just illustrates the low regard carers are held in.

On the contrary, it shows how important they are and what a difficult job they do.

Couldn’t agree more. At the point whereby we finally and reluctantly decided my mum needed the 24/7 care only a care home could provide I added up how many people were involved in keeping her at home. It was 14, many of whom were unpaid. That illustrates perfectly how labour intensive it is caring for someone with dementia. It’s cruel to minimise that for someone early in the process.

This insistence on posting the most negative possible thing about dementia on this thread just illustrates the low regard carers are held in.

I don't understand what this means @SinisterBumFacedCat. How does recounting realistic stories about dementia demonstrate a disregard for carers?

I don't understand this, either.

If a struggling new mum came on here asking for positive stories about new motherhood would you be clamouring to give her the worst examples? Or the parent of a very sick child looking for hope? No because that would be cruel. But when it’s the child of someone with dementia then it’s bullet points of the most awful possible symptoms (that don’t necessarily happen to everyone).

I don’t believe in sugar coating dementia, but I also don’t think it’s any better barraging doom and gloom on someone, especially as the Op has requested positive posts.

But when it’s the child of someone with dementia, then the thread shows bullet points of the most awful possible symptoms (that don’t necessarily happen to everyone)

Yes. It is certainly and unquestionably a thread full of bullet points of the most awful possible symptoms.

That is because there are almost NO positive possible symptoms.

Daughters (and very occasionally, sons) invariably end up with a huge amount of responsibility for their sick, demented parents, and have pretty much no respite from this, as the symptoms of dementia are so utterly awful, relentless, terrifying and endless.

Indeed. The difference is that with dementia there’s no hope of recovery or improvement. The only way is down. And it’s far better to be prepared than told soothing lies.

100% this

Not every patient is the same, not every carer is the same, there are a myriad of different experiences across the board. Yeah it's shite, and I'd rather I didn't have to, but I do and wallowing in the relentless misery of it would drive me insane. Nobody is suggesting it's great, just that it's not always misery all of the time

Nobody is suggesting it's great, just that it's not always misery all of the time

You're pretty much on your own with this opinion.

Practically everyone on this thread disagrees with you.

Some don't. And I'm sorry you found it so hard but don't assume that's going to be everyone's experience. People are different

There was one old lady in my mother’s (dementia) care home who always seemed happy. Almost every time I went (often) she’d tell me that her mum and dad and gran and grandad were coming soon, and they were all going to the seaside together.
How I wished that my mother, who was always fretting about something/ wanting to go home, could have been happily back in some sunlit childhood idyll!

Worse than my Dm, though, was the poor lady (in her 80s) who was so often crying that her mother didn’t know where she was, she needed to go home! Or that she needed to go home to look after ‘the baby’. The staff were always very kind and did their best, but nothing anyone said could convince or comfort her. 😰

Not reposting the list because it’s fucking horrendous but fine, keep up your good work not telling soothing lies.

Every other dementia thread on here is grim. And I have been on them. I’ve posted grim tales. Just one thread of leaving out the absolute worst of the worst would have been nice.

There’s also the odd nice visit like today when I took Mum for coffee and we got back in time for the quiz. Not a soothing lie, just a good day within a mixture of good and bad.

If a struggling new mum came on here asking for positive stories about new motherhood would you be clamouring to give her the worst examples? Or the parent of a very sick child looking for hope? No because that would be cruel. But when it’s the child of someone with dementia then it’s bullet points of the most awful possible symptoms (that don’t necessarily happen to everyone).

I can't believe you're making these comparisons. There are zillions of positives to motherhood and hopefully sick children will get better. There is zero hope of improvement with dementia. Yes symptoms will vary from person to person. However, the overriding fact is that everyone close to someone with dementia will watch them slowly lose their mind. I call that horrific.

Some proper basic people on here

My account of my MIL's dementia journey was no lie.
Of course dementia is an awful condition. But it varies in the way it impacts people's behaviour.
My MIL was not aggressive. She didn't smear faeces. The essence of her calm and accepting nature remained throughout. Was it difficult for those of us who loved her? Of course. But it was entirely different from how my gran's dementia impacted her, and our lives.

I recognise that people feel the need to vent their own distressing experiences, but that is not what OP asked for.

This reminds me of when my late husband's cancer was diagnosed. When he was about to start chemotherapy, people seemed to delight in telling him, and me, just how awful it would be. Despite us telling them that his consultant had told us that his chemo regime was one of the easier ones. Which it was. I have no idea why people felt the need to put the fear of God into us unnecessarily.

My grandma's dementia in hindsight was pretty much OK. She lived in an absolutely lovely care home where they did lots of activities and she had plenty of friends. Her dementia was basically that she had extremely bad short term memory. It wasn't too distressing to see her. She was always "her" and her personality never went.

My mother's dementia is worse. She is also in a truly wonderful care home with amazing staff that takes wonderful care of her. Her dementia is different and worse and it upsets me a lot to lose her slowly. However, I have come to learn that there is a lot of time when she's content and that's all that matters. My own grief is bearable - watching her in pain is not. I'm sure things will get worse as it progresses but we do still find a lot of joy and laughter when we spend time together.

If your mum does go into a care home, it is vital that you visit as often as you can (if you have a good relationship, and without burning out). My mother gets a visit every day and I have no doubt that it helps her hugely. Also try to keep her away from overnight stays in hospital as they can really mess up people who have dementia. Good luck - it is hard but it isn't unrelenting agony.

I would never try to provide the bulk of care for a person with dementia. But apart from that, I disagree with you.

It’s just as well that some of my relatives have had periods of happiness and contentment in-between the confusion. Because I have such a strong family history of dementia on both sides, that I’ve long believed I’ll almost certainly develop it myself. I thought I was at peace with that, but today I’ve felt quite upset by this thread.

I hope I have a little more to look forward to than an unrelenting nightmare of literal and metaphorical shit. My older grandmother started showing early signs of dementia in her forties, so I guess I ought to join Dignitas soon. I wouldn’t want my relatives to spend years (or decades) wishing I would hurry up and die.

By the way, my older grandmother lived to 95. A few weeks before she died, she was happily listening to Christmas carols, waving her hand to and fro in time with the music. She no longer joined in with the singing, but always had her songbook turned to the correct page. Eight years earlier, her husband of 60 years had died, but she barely seemed to mourn his loss and was even described as “embarrassingly cheerful”.

@Doughnut100 I have a positive dementia story. My gran had it and she was active and happy and even cooking until about 6 months before she died. She couldn't remember who you were for longer than a couple of minutes and constantly responded to things as if she were a child and conversations were very repetitive but she had quite a few good years then a sudden (in dementia terms) decline. She was well looked after by all of us and we visited often, she would forget us or call us the names from the generation above but she didn't really decline much until her DH died from cancer.

Her end was so quick she never went into a home, she stayed at home until the end and we took her on regular visits to all sorts of places. Her favourites were the garden centre and my aunt's house. She was, however, only able to do all this because she had such an involved support network who between them spent every single day around work with her on a careful schedule to ensure her and my granddad weren't left to cope alone and while it was positive for her and her independence and happiness, it was a massive strain on everyone around her and it took an awful lot of work to make it work.

I also have a very negative story about my own father but that was alcohol-induced dementia and he wasn't a particularly active person and never lifted a finger to help himself in his whole life and I know my DGM is not representative of everyone by any means.

@TheShellBeach

Nobody is suggesting it's great, just that it's not always misery all of the time


You're pretty much on your own with this opinion.


Practically everyone on this thread disagrees with you.

I disagree with the suggestion that "everyone disagrees". It very much depends but it isn't always misery all of the time. It is possible to live for years with Alzheimers anyway and have contentment and experience joy and love for both the person and their carer-relatives. It is brutal and hard no lie but caring for anyone will be like that because its a physical and emotional toll on a person who loves their relative that they care for.

But it is possible to organise a life for a person - who is lucky with the progression of their disease in that they retain aspects of themself - that is comfortable, gives them pleasure and is safe and secure in their own home. Its hard but not misery all the time.

You’ve had lots of posts about people’s experiences @Doughnut100 so I will just focus on the practical side.

• Arrange POA (health and financial) now rather than waiting for a last minute crisis
• Check that your parents’ wills are up to date and that you know where they are
• Check important financial info (for both parents) and that you know as much as possible about their finances and where key paperwork is kept (maybe make copies/ take photos).
• If you have any questions about family history or people in photos, sadly now is the time to start recording this. I’d also suggest recording your mum if she’s telling you family history - I have photos, but no video of my mum, and now I can’t really remember what her voice sounded like.