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.

Also the dementia pathway is different for each person. Some people seem to do best in familiar surroundings of home and family However, this is the opposite for my MIL- most of her anxieties (and she had anxiety pre-dementia) are tied into her home. The sight of the dogs triggers her worries that she forgot to feed them or that their hair is falling into their eyes. The sight of unscreened windows in her large house at night terrifies her as she fears people peeking in. She would wander all night checking locks. The sight of her garden through her windows during the day upsets her as she wants to water and prune. Family upsets her- every member triggers an anxiety- usually relating to them driving at night or fears over where they will be sleeping and will they be safe. The sight of her grandchildren worries her because “shouldn’t they be at school”. She moved to a lovely care home 6 months ago and all of these triggers evaporated. Family visits one at a time every day in the morning when she is at her best. Her house security issues evaporated. The quiet, simple routine has been a godsend. Sadly one SIL refuses to accept that her mum is doing better in care than at home and constantly brings her out for weekends, against the advice of the carers and my MIL’s geriatrician. SIL brought her “home” for Christmas. It was so cruel. Just cruel. All of MIL’s anxieties returned and she spent 48 hours crying and sobbing saying she was frightened and didn’t know where she was. SIL was so cross that her mum couldn’t “perform” for Christmas and the pursuant noise and people and dogs and clutter and couldn’t understand the rest of us when we said that this was the worst thing we could be doing. MIL was terrified. I am angry that MIL had to go through that and I am angry that this will be the main memory my young children will have of their fine, loving grandmother. A cowering, terrified sobbing little old woman.

Not a carer but a family member. Very difficult situation. Am happy to answer questions if there is anything you want to ask.

This is exactly my experience. You need to prioritise the wellbeing of the carer too.

That sounds so avoidable @LargeSquareRock . I can see why you’d be annoyed.

My own mother came out on Xmas day and was fine in her old home. It so depends which is why dementia is such a horrible and unpredictable condition.

My mother had Lewys Body dementia. She lived at home with me and my dad for about three years after diagnosis. She was forgetful, had visions, became incredibly tearful and passive, incontinent and increasingly unstable on her feet. Eventually she went into a care home, she gradually just slipped further and further away, she couldn't walk, feed herself and, by the end, even respond. She quietly slipped away.

My dad developed early signs of dementia but was generally OK( needed reminders on taking medication, sometimes confused but could manage) until he caught covid. He then rapidly developed vascular dementia and became incredibly aggressive ( he had never so much as raised his voice at me in all of his 80 years prior to that) Unfortunately, because of covid, he was basically shut away in a hospital, we couldn't see him for weeks. Eventually he recovered from the covid but the dementia continued, not as aggressive but increasingly unable to look after himself. He never returned home, he went to a couple of different care homes, he understood why he was there but wanted to come home. Unfortunately he had a number of other medical conditions which meant he had several stays in hospital, after each one he had to go back into isolation from covid and this increased the speed of deterioration, it was a dreadful time for him and desperately harrowing. Thankfully he died from medical complications after some six months.

IME wish it had been that easy!

My mum had to have major heart surgery and dad be wandering the streets and soil the bathroom all over regularly before social services were forced to support even respite care which he funded himself, because despite lacking any capacity at all, he wanted “to be at home”.

So sorry OP. It can be a slow decline, my dads was 7 years from diagnosis to death and I think he only lasted so long as mum was his constant carer and did an amazing job at the expense of her own health. 💐

your mum sounds like she still has a very fulfilling life and I would grab every minute whilst you can.

@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.

IME wish it had been that easy!

Agree with this when it comes to placing someone in a care home. My mum maintained that she wanted to stay in her own home. I think if she had been in her right mind, so to speak, she would have felt differently. But she had no idea that she wasn't really living independently at all and thought she was doing everything herself, when it was mostly me. Social Services insisted that her wishes were paramount as long as she was capable of expressing them. It sounds harsh, but anyone who doesn't want to find themselves sucked into the spiral of dementia care, needs to step back as soon as possible before they are identified as 'the main carer'. It takes over your whole life and it really is no job for family, unlike some other illnesses. My lovely mum died of a stroke and pneumonia in the end. Another few months of caring for her and I think I'd have gone first. I really do.

How old is your mum OP? It sounds like she’s very independent and active and it’s important to quality of life to try to maintain identity as much as possible. It’s a horrible condition but it varies so much for each individual and does have a beginning, a middle and an end. There are ways of adapting at all of these stages please do look up Wendy Mitchell and Keith Oliver who live positively with it. Also there is the young dementia network that sounds like it might be useful for the life stage your mum is at if she’s physically active, sociable and working.

She will need a diagnosis and that will help her access help and plan for the future. Occupational therapy might be useful for your mum to help think about what she can do and ways of adapting her activities. X

Why do you think she has dementia if she's not got a diagnosis? Could you be worrying for nothing? Sending love your way either way x

As someone who had a family member diagnosed two weeks ago with early onset Alzheimer’s, but who has known they’ve had it for two years plus suspected it for a further two…. This thread is so heartbreaking.
I know what is likely to come (due to work related experience). But hearing there are no positive stories whatsoever… urgh! It’s hard to comprehend really.

wishing you lots of rest & peace after your experiences.

I'm very sorry, OP. This must be a heartbreaking thread for you. I do recommend reading it all, though, and getting yourself on both the elderly parent and dementia boards here - because the one thing that can ease the difficulties is preparation.

LPAs for health and finance - and activated ones, because it can take a few weeks to do and when you do need them, it might well be in a hurry. An advance decision form about end of life care completed and witnessed. More general discussions about wishes for possible future scenarios (you won't always be able to follow them, but it does help.to know). A list of where important paperwork is kept (and ideally moving it to your house). A list of insurance, pensions, banks, doctor, dentist, optician etc

All these are really hard to get once the person loses capacity, so sort them early. And start making if-then plans for likely scenarios.

Do encourage her to see the GP and get a memory assessment. If she's not keen and you have her doctor's details you can speak to them yourself. They can't tell you her medical information without her permission, but they can listen to you. Give them details about any symptoms.you've noticed that they might not see in a consultation - is she losing her balance more, poor sense of direction, no sense of smell as well as direct memory issues. It all helps them form a picture. Then they can call her in for a general health check or meds review and offer a memory test as a 'while you're here we might as well check'.

There may or may not be meds available, depending on stage and type. The later she's diagnosed the lower the chance of there being any that will work. Even if she doesn't want to take meds, a diagnosis is the door to a lot of other help - social services and OT assessment, council tax reduction, the utility companies emergency lists...

@Doughnut100 this sort of diagnosis is so, so hard. Agree with others that there is no one path for people with dementia. Some deteriorate very quickly, for others they deteriorate a bit, then plateau, then deteriorate a bit more.

My dad was diagnosed with dementia about 6 years ago. My mother immediately went into denial mode and pretended that everything was absolutely fine. Refused to engage with the NHS and charities. The pandemic did not help matters as the NHS basically washed their hands of dementia patients at home and they just had to get on with it.

I'm not going to give you any horror stories or promise it'll be OK as that's not what you need to hear right now. What you do need to do and think about as a child of someone with dementia is practical things you can do to help. Things like a large clock to help them keep track of what time it is and technology which will prompt them to have dinner or breakfast or whatever. Start looking around for dementia support groups or charities in your area NOW before you need them. Lots will run things like coffee mornings and walking groups which are as much for the people caring for patients as they are for the person with dementia. Start thinking about what you physically can do in terms of care. It's fine to be happy with taking your mum to hospital appointments, picking up prescriptions, organising shopping and to draw the line at toileting. Social care is so stretched that it will push families to take on caring and unless you are prepared to put your own life on hold for years and move in with your mum it will push you to breaking point.

Also last point - read up on sundowning. This was the most distressing thing for all of us, it's a phenomenon whereby symptoms are much worse in the late afternoon and early evening. They're not sure why it happens but quite often people are fine through the most of the day and get a lot worse with shouting, paranoia, restlessness. If you know what's happening, you can try to find ways to cope with it all.

I doubt you'll find positive dementia stories.

It's fine at the onset then gradually they forget to wash, eat, drink, who people are, where they are, they can get confused and angry, some refuse care, some get violent. It varies for each person but most/all of this is typical of dementia patients.

The best thing you can do is start getting some care in with a care home being in the back of your mind for the future when things start to decline.

Dementia isn't a singular condition, it's the collective for the symptom. Cobs

Consequently there's huge variation.

In many cases people loose inhibitions so their underlying personality can set the tone for the early and mid stages. Once more advanced it can be very tricky to manage at home without professional assistance so I would suggest thinking about options that work for you.

I'm not going to claim anything but how awful it can be but I have known some people who have managed well before going into nursing care for the last 12 months or so. I deal with many professionally and typically women are easier to cope with at home

The best thing you can do is if they believe they're meeting the king then say that's lovely when are you meeting them. Don't correct them because when they become lucid and they know they're confused it can cause upset so if it's harmless thing like my example then agree.

It's really important to engage with all services you've been put in touch with.

My mum let my gran stay in her own house who had vascular dementia and by that point social work had put signs on doors saying what each door was, had boxed in her electrical sockets so she couldn't switch anything off at the wall and the cooker was disconnected. She burnt herself badly when she boiled the kettle one day. She really needed a care home and not home care. My mum regrets that to this day. My gran was not lucid at all.

Honestly, it only gets better once they are in a nice carehome where they are safe and have around the clock care and hopefully at the happy oblivious stage so they don’t realise they are no longer in their own home.

The hardest stages are when they are in denial (that may not apply to OP’s mother if there is already a diagnosis) and covering up that things are amiss. And when they start to get lost in what were familiar places.

I echo this and the others posting. My Dad's decline was slow at first, just the repeated stories and questions as the clue. Then loss of ability to remember how to do the most basic of tasks, which can be dangerous (leaving the gas hob on - we had to take his cooker out).

He became incontinent and that was horrendous for him and everyone, although after a while he just didn't notice. He would stuff his incontinence pads down the toilet, then he started refusing to wear them.

We got carers in 4 times a day and they were fantastic with him AND would do anything for him that needed doing. These were from a small, private business run by a local woman - prior to that, the big business that supplied his carers was terrible as they weren't allowed to do much at all.

Dad kept having falls and eventually went into a care home. It described itself as a dementia specialist home but they couldn't cope with Dad, who had by this time become aggressive with strangers - my gentle, calm, funny Dad had turned into a terrified old man. He didn't recognise me for the last 18 months of his life, which I found distressing.

He had repeated hospital stays and eventually the LA found him a fantastic care home which genuinely did know how to care for him. He got sepsis due to infected legs and died peacefully in hospital just before Christmas 2022.

There are no positive dementia stories.

Same - I'm sorry OP but positive stories are very rare in the world of dementia.

Oh and things change constantly. You can buy one of those big clocks and it’s great as it tells them what day it is etc, a month later they don’t even notice the clock is there.

Also to add - it doesn't always end in a care home. Dad was at home with my mum looking after him until he was admitted to hospital after a fall. That really showed up how bad things had got as the change of scenery completed threw him, he was away from everyone and everything familiar and deteriorated very quickly - couldn't remember he was unable to get out of bed and fell twice trying to get to the bathroom. No differentiation between night and day really as there are always lights on and people moving around. Wouldn't/couldn't engage with physiotherapists. He was in hospital about 4 weeks before he died there.

Falls, other accidents and illnesses will bring any older person into hospital but for someone who has dementia this is a much bigger "deal" than someone who can understand what is happening to them.

That's not helpful.

It was very difficult watching my MIL progresss through dementia. I think the worst time was when she knew that it was happening and got upset with herself, calling herself stupid, etc.

But given the diagnosis, there were things along the road that we were grateful for. Her dementia journey was quite gentle. She didn't become aggressive or do horribly embarrassing things (I mention the latter as a positive, because the old her would have been mortified if that has been the case). She remained the same calm and gentle person that she'd always been, and she loved us the way she always had, even when she didn't know who we are. When I visited, her face would light up with joy, but when someone asked her who I was, she couldn't say. She just knew that she loved this person.
She also still took pleasure in things. Almost more so because in her mind she was experiencing things for the first time. The most joyous moment we had with her was when I have her a large dairy milk chocolate button. Tasting chocolate 'for the first time' brought her a joy that I can't even explain. But I can still see her face. And each subsequent taste got the same reaction.
Many of our visits were warm, positive and healing for us. We're were lucky.

So while it's a terrifying diagnosis that no-one wants for their loved one, along the way there can be things to be grateful for. And my MIL's (council) care home and its devoted and loving staff, was a big plus for us and for her.

Have you had her B12 levels tested? GPs often don't test and the symptoms can present as similar to dementia so it is often undiagnosed. (Happened to my grandad who was then in a care home till a new GP came along and tested him)

I’m so sorry you’re going through this, OP.
We’ve been through it all twice, my FiL and my DM.

I’m sorry to say it was hard both times, exhausting when we had FiL living with us, but I drew the line at that with my DM. I did truly love her, but she’d never been the easiest person anyway.

Both eventually moved to care homes. What I would say is, please, never be made to feel guilty if and when the 24/7 care and supervision they now need is just not possible except in residential care. Please ignore those sanctimonious types who say, oh so piously, ‘I could never put a parent of mine in a home!’ or bang on about how nasty and uncaring we Brits are, when ‘in other countries’ people look after their own. (In any case it’s not true.)

Such people have never, or hardly ever, had any experience of the practical daily realities of dementia. But they so often think they know it all.

What I’d add is that contrary to popular opinion, there are some very good care homes out there, and (we looked at so many both times) the best are not by any means necessarily the most expensive.