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.

Hi, you say you have power of attorney... There are 2 types so make sure you have PoA for health as well as PoA for finances (may have different names). I work in a care home and have a lot of families not realise that there are 2.

Look around care homes, look at cqc reports, care home review websites, etc and maybe ask on local groups if anyone has personal experiences of local homes.

Make sure the care home mentions and adheres to person centred care.

Care homes are there to deal with the "worst" parts of the dementia so you and the rest of the family can spend time with the person you love.

I am sorry op I can’t think of anything positive about dementia at all. It’s beyond horrendous both for the sufferer and the family. Get as much support as you can and do not underestimate how hard caring is. Be careful what you take on. X

There are few positives. It's a terrible illness to witness, and very stressful to support. But, I feel blessed that my dad almost always remembered me. (Not necessarily my name/ who I was, but would always react positively to the sound of my voice, even when non verbal and even close to the end). I appreciate that I'm lucky in that respect, as not everyone has that experience. Another 'plus' was that the dementia seemed to remove my dad's severe, chronic back pain- I think as part of his brain became diseased, he no longer experienced the same pain. Also, some things that seem like extra challenges at the onset can have silver linings. When my dad lost his mobility, it actually helped us find him a better care home, as he was no longer a threat to other residents (we had terrible trouble finding the right care setting for him, but got there eventually). We used home carers as long as possible, and we kept up their daily visits even after he went into a care home, as he liked their company. (Again, appreciate that for many people this might not be financially viable). Until he was very poorly, his carers could take him for trips out eg seaside for an ice cream, or later, as the illness progressed, just a drive in the country listening to 50s/60s music. He was able to enjoy things like this until the very final stages. In his case, it was possible to still have some quality of life until perhaps the final year. Read as much as you can. There was lots more in the way of understanding / support around dementia when my dad was ill than there had been for my grandad, and technology can also provide some good solutions in the earlier stages.

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?

I know people are trying to be helpful with anecdotes about some of the less stressful times. Fair enough. I remember plenty of good stuff, like the fact my mum never forgot who I was. Like the time when she was looking at her TV Times and suddenly said 'Good grief, I'm 90' because she had calculated her age from the date on the magazine. And when she told me, at the same age, that she liked to jog up and down her living room to keep active. She remained quiet, passive and affable for the most part. But the crises piled up one on top of another. They would just crash in on you from nowhere. And when you're the one at the coal face and not a grandchild or an in-law or a cousin twice removed, when you're the one - the child - on whom all responsibility falls, no amount of anecdotes or lovely moments can make up for the sheer relentlessness of it all. I'm sorry to say, it is brutal.

My mum died of dementia. She got it following a stroke though so it was life changing in an instant.

All people are different. My mum knew me right to the end. And even when she was really bad we still had special times. She died at home with carers coming in multiple times a day. She didn't want to go to a home.

The hard bit is that they become quite child like and need help with everything. The incontinence was the most difficult bit. Dementia is a lingering death. I would say that my mum suffered greatly and was aware of what she had lost. The stroke stole a lot of her speech so it was very difficult to determine if she didn't understand or just couldn't find the words.

My Mum has early onset at 64. Pretty sure we as a family all agree a massive heart attack is probably the best we/she can hope for. Mum has said this herself as she doesn’t want to live with dementia but sadly has no choice.

DH’s grandma lived for 10 years in a care home after being diagnosed with dementia in her 80s. She was desperately unhappy and deteriorated badly over that time. It was so sad to witness.

There are no positives with Dementia.

• sundowning
• faecal excavation/smearing
• finding actual shit hidden in random places
• being sexual towards relatives
• rubbing genitals and offering you to smell it
• refusal of personal care
• aggression

All utterly shit.

The only positive part of my DM’s Alzheimer’s diagnosis was eventually getting her into a nursing home. The years leading up to this were hell for all involved including her.
She does seem content at the moment, she is just about mobile and I do pray that the very late stage doesn’t last too long for her.
I feel very upset for my DM when I see other women around her age, early 70’s out and about meeting for coffees etc.
It really is such a cruel disease.

OP if you don’t yet have POA now is the time to try and get it done.

My father died of pneumomia due to poor swallow in Nov 23.
We were not a horror story.
He was continent with the v odd accident up to his death. He was 83 and had it for about 9 years..He was at home with my Mother whose mobility is shocking so couldnt do anything to help. He never got up at night.
He never went wandering or take his clothes off in public ( ie the horrors you hear)
We had private cash in hand carers plus NHS carers.
Never agressive save for tnis horrible NHS carer who would always put hot water on his head in the shower despite being repeatedly told not to. Poor Dad used F and blind in the shower with this fella.
He died one week after he became immobile and unxpectedly . I feel for younger people diagnosed with Denentia.
I know he passed just before the #hit was to hit the fan but up to that He was easy managed. Bless him

Sorry OP, to hear about your mum.
When my mother started to show signs of forgetfulness and confusion, I also wondered if we could keep her at home and care for her there and I also searched for 'positive' dementia stories.
Unfortunately, it's a horrible, progressive, terminal disease, a great unraveling as I saw it described in one of the many books I read. I echo what others have said about the wonderful Teepa Snow and I was recommended a book called Contented Dementia.
We were lucky that my kind and gentle mother remained like that most of the time and didn't exhibit many of the unpleasant behaviours outlined, even if she refused showers and changing clothes at times. She usually recognised us when we visited her in her care home (it wasn't possible to care for her at home after a while as she wasn't safe there. She was physically quite strong at that stage and became determined to go home to her mother whenever she spotted an opportunity, night or day) The care home meant I no longer worried about her safety, her medication or her physical needs and I was happy that she was well cared for. Before the care home stage, I was forever trying to make her 'see sense', that her parents were dead and that she was at home, despite her constant protestations. Once in the care home, I could agree that her mother would call in tomorrow, that she was a school girl about to sit exams or even that she was one of the nurses working there.
In the latter stages (she was over six years in the home) , she didn't know our names but she knew she loved us, that we belonged to her and we loved her. Her face lit up when I visited her and she often greeted me with the words 'lovey, you're here'
By the time of her death of Covid in Jan 2021, she was doubly incontinent and increasingly non verbal/nonsense verbal but she was spared the stage of being confined to bed, being turned to prevent pressure sores, unable to eat, drink or speak at all. The positive from it all was the love that remained when everything else was stripped away.
I wish I could offer you a more positive POV OP. I thought I was grieving her as she gradually slipped away into her own world but her death was still a terrible blow , despite the years of dementia.

There are no positives with Dementia.

• sundowning
• faecal excavation/smearing
• finding actual shit hidden in random places
• being sexual towards relatives
• rubbing genitals and offering you to smell it
• refusal of personal care
• aggression

Plenty of people with dementia will never suffer from any of this. As I keep saying, it depends on the type of dementia diagnosed and the person.

Whatever form it takes, it is brutal for the relatives who care because as it progresses and there is more need for personal care, it becomes very physically exhausting. It is emotionally exhausting in a way that is hard to describe because you watching someone lose all their capacity. There are definitely shining moments that make it worth while but it is very very hard.

You shouldn't think OP that any of the above is inevitable. My experience is with Alzheimers and I've never seen any of that except for few times aggression that comes from frustration.

Imagine what it would be like if you were sitting in a locked room with one other person who held the key. You wanted to go to the loo but were unable to communicate that to the person with the key. Say they spoke only Russian and could not understand any of your gestures. You need help to leave and are desperate to go. You try saying it lots of different ways, lots of gestures and miming - but the person is indicating to you they want to help you but they just dont understand and you cant leave. They block your path. Eventually you will try to push them out the way, maybe be aggressive because you really need tthe loo. That is what it is like ALL THE TIME for people with dementia as they lose their ability to use language and communicate. People want to help them but dont understand what they want or dont want. It's no wonder there is aggression when they get frustrated.

I’m not sure I would call it a positive experience, but maybe in the range of better possible outcomes. My father went quite quickly downhill in covid, but still living at home. Really hard for my mother to look after him, but he was still functioning and they had some nice times together. And one day, he just didn’t get out of bed / was completely unreactive. He died about three weeks later, possibly of a non dementia related cause, but we never really knew.

I’m not sure I would call it a positive experience, but maybe in the range of better possible outcomes.

@Trenisenne has a better way of putting it.

I think in this situation the better range of outcomes is where the dementia progress is delayed as much as possible, the type of dementia is one where they basically retain their personality and are not acting totally out of character (violent, shit throwing) and when death comes it is quick and painless and from something unrelated before the end point of double incontinence, swallow failure and all that associated trauma.

Actually I've just remembered, with everyone talking about these personality changes and aggression etc... I've seen it go the other way too, ie a positive change... I remember a resident who was the most lovely, polite gentleman. I remember saying to his family once about how it's a pleasure to look after him, and how lovely he is to everyone. Family member got emotional, and told me that that is not him, that he was an angry, abusive father who made their life hell, and that it's bittersweet to see him be so perfect to staff, when he couldn't even be like that with his own family.

Another one that comes to mind is a tiny little darling lady, always profusely thankful, always polite, everyone loved her including the other residents... apparently she was awful and angry at home, but turns out it was undiagnosed pain, and it was only since she came into care, with health professionals, that it was identified and treated. She and her family were all so happy she was in care. So there's a positive story too.

Gosh, my mum hasn't been able to do any of those things for years. She won't go outside, can't watch the tv, can't really focus on photographs etc, doesn't eat - has to be fed. And she's been like that for such a long time. There is no joy for mum unfortunately, the light went out a long time ago. All she has is sitting in a chair staring into space.

I am LPA for my FIL who has dementia and has just lost capacity (so the LPA is activated). The biggest thing that he wants and I will work had to honour is that once he cant recognise his family members, he does not want any medical tests or treatments that extend his life, just comfort measures. I am beyond grateful that I was able to have the conversations with him while he still had capacity so that I could be sure what his wishes were for the future.

If you have LPA, try really hard to nail down what kind of medical help they do or dont want so that you can advocate for them when they cant themselves. I hear of so many dementia sufferers being treated for cancer or pneumonia and the relatives know they wouldnt have wanted it, but because the paperwork wasnt sorted, the doctors continue to treat them and extend their lives (and imho their suffering)

https://www.ageuk.org.uk/information-advice/money-legal/legal-issues/advance-decisions/#:~:text=It's%20a%20good%20idea%20to%20put%20your%20advance%20decision%20in,you%20don't%20want%20them.

My mum didn't do any of these things and she had dementia in her 90s for about 3 years.

What was horrendously distressing was not being able to connect with the mum I'd loved all my life and watching her live in some imaginary world. Your mum looking at you with zero recognition is one of the worst feelings in the world.

Like @VeterinaryCareAssistant we experienced the faecal smearing and hiding it in places like handbags etc. I think she had no awareness of what was actually happening and didn't know what to do with it. She also couldn't wash herself etc but wouldn't let us do it for her and this was all pretty early on after diagnosis. We're another 5 years down the line now.

That must be awful. My mum never stopped recognising us but she did stop recognising her surroundings. Home was not the marital home she had lived in for over 50 years, she no longer recognised it. Home was her childhood home. She also lived in the past and would talk of long dead relatives as though they were still alive. It was heartbreaking seeing this fiercely intelligent woman regress to virtual childhood.

@KimberleyClark - yes my mum failed to recognise her surroundings. She also talked a lot about people she'd known in her youth. My sister and I used to hang on her every word hoping for some new insight into her earlier life. She'd throw out tantalising titbits out of the blue like, "well of course he was desperate for me to marry him but I didn't want to be a farmer's wife ..." and then tail off.

For what it’s worth, OP, there's an article in the Telegraph dated 3 January 2024 in which dementia nurse Julie Holder talks about a ‘good dementia’.

I don't think it is helpful to list 'horror stories' of what parents suffered.

My dad had very few of the things listed and never went into care.

A lot of people with dementia have other illnesses which end up being the reason for their death.

My father never forgot who we were. He did ( a few months before he died) ask me to remind him how many children I had (which was so sad) because he said his memory wasn't so good.

His main symptoms were loss of mobility (Lewy Body Dementia), hallucinations, and becoming more controlling of money (which he always had been.) He'd also become angry and aggressive if he thought anyone was taking away his 'control' of day to day decisions.

However, these worst times only lasted about 6 months at the end of his life.

You and your dad were very lucky @HurryUpSpringDays. We’re not telling “horror stories”, this is the reality of dementia for most people who are afflicted by this awful illness, which is the number one cause of death in the UK. More people die of dementia than cancer. What’s not helpful is to whitewash and minimise what lies ahead.

I knew where we were headed with my mum because my gran also died of dementia and that was helpful. Imagine if I’d been lulled into a false sense of security by an account like yours - it was bad enough the first time my mum didn’t know who I was but at least I was expecting it.