To ask for any positive stories about dementia

[Flutterbylittlebutterfly]

I know I'm probably asking the impossible but desperately seeking some hope and possibly a hand hold. I know I'm probably BU to even ask as it's a bastard of a disease but wanted traffic.

My lovely dad has just been diagnosed with dementia. He's in the early stages at the moment but the progression already since symptoms first started have been quite quick. We watched my DGM die from the same thing and I just feel devastated that it's happening again. At the moment I am catastrophising and really spiralling. I don't know how to best support my DF and am so scared of the "known".

DGM became very aggressive and unsettled in her final years and I am dreading this is the path laid out for my DF. Does anyone have anything positive, happy or helpful to suggest navigating this going forward. I just feel lost and like there is nothing but misery ahead.

My granny passed away earlier this week; she was diagnosed with vascular dementia seven years ago, and had been in a care home for the last two years.

I'm afraid I don't have anything either positive or practical to add but I just want to say I'm sorry about your dad's diagnosis

Hi OP. We found there is a really great support network out there once you feel ready to look into it, I know it can take a bit of time to reach that point. Once you're ready, perhaps worth contacting Alzheimer Society or Alzheimer Scotland depending on where you're based. They can offer lots of practical advice (care suggestions, benefits etc) as well as educational (events like discussion/awareness groups to meet people living with the disease) and emotional support (counselling, support groups etc). It's not uncommon for people living with dementia to become isolated by the disease so they'll often run events/activities for both the people with the diagnosis and their families, things as simple as weekly coffee mornings. I've attended some of the events and there's honestly a lot of joy that you likely wouldn't expect. I know a lot of carers also found strength and optimism from others in the same situation. It's not for everyone but it's helpful to know that the support is there. Wishing you all the best OP.

Tough one OP. The condition and finding anything positive. Both father and maternal grandmother died with dementia. Granny was very old -
In her 90s - and remained her sweet self throughout, reverting to singing nursery rhymes and believing mum and dad to be young lovebirds again when she saw them. I may have missed the real story because I was living away but she had good care, and I don't believe she suffered dreadfully.
Dad was younger - died at 84 and had in his prime had a huge brain. One of the brightest people I ever met. Not university educated bc he hadn't the opportunity. But amazingly bright. Whilst in most respects he became a large immobile baby he at least didn't become violent. And despite becoming non verbal, his charm shone through genuinely through his twinkling eyes. It was tough. But I count my blessings that he could still summon someone across a crowded room by smiling at them.
The hardest thing I had to do was tell him mum had died. Briefly he understood, held out his arms and said 'oh Faff..' as if he as a dad was comforting his daughter. Soon afterwards though he started asking where mum was.
So - I'd say count any small blessings and cling onto them. And continue to love them despite their condition.

My mum has fairly advanced Alzheimer's and whilst I couldn't say it's been in any way good it also hasn't been as bad as it is for some people, or as bad (so far) as I'd been anticipating.

She's relatively happy, albeit very low interaction. She doesn't seem to be having an awful time.

Nothing positive from me, it destroyed both my parents and used up all their hard earned cash in care home fees

I have a slightly positive take. Only enabled because my brother and his wife lived with my Mum and cared for her so she didn't have to go into a home, and they looked after her fantastically well.

But my mum had been an angry and insecure woman for most of her life. She could be very confrontational and judgemental - the dementia removed all that. She became a contented (mostly) and accepting person, who took so much pleasure from very simple things (nice cake, a cat on the garden wall), so she became a much more pleasant person to know in her last years.

This is so true. @Wakemeupbe4yougogo when DM was terminally ill, she came home to die. I walked into the lounge one day and she was tittering away to herself: “I had to laugh, dear, Chopin’s funeral march just came on!” 🤣🙈

Also @Flutterbylittlebutterfly the elderly parents board on here is fab, I’ve had some lovely support on there just this morning so don’t overlook it.

My mother had vascular dementia. There is no medication they can give for this type. I used to find it quite upsetting when people implied I was not doing my best for her because I hadn't "told the doctor to give her something for it". So one piece of advice I have is to not give too much time to people who know nothing about it. Read all you can about it so you're sure in your mind that you know what's happening and what might happen in the future. I would also tell you to make the most of any happy days you have and bank the memories. There might be good and bad days to begin with but with my mum in any case, it very quickly became a mixture of bad and less bad days. Your father has vascular dementia now but my mother developed Alzheimer's as well, after a few years. This is apparently quite common. If your father is fit and active, do all you can to keep him like that. My mother wasn't and after a while it became difficult to get her to do anything at all, even things like getting out of her chair to go to the loo, eat her meals at a table, go to bed. Small everyday conflicts like that really take their toll. I'm sorry I'm not painting a happier picture, but it's better to fear the worst and hope for the best, for your own wellbeing. Being consistent with your love is really the only thing you can do.

My friend’s angry, bitter dad also mellowed into a nicer person after developing Alzheimer’s.

Both of my grandmas had dementia and although they each went through difficult phases, they seemed content most of the time. One laughed a lot at silly things, even when in the advanced stages, and the other used to sit amongst the other care home residents with a gentle smile on her face. About three weeks before she died, my mum and I were looking at old photos with her and she said, “oh, it’s so nice, old friends together!” So even the later stages aren’t necessarily a time of unrelenting misery.

My mum had it. She was depressed for most of her life but it seemed to make her forget her depression so weirdly it was a relatively positive thing because she seemed more at peace with life than she had before she was diagnosed. It was still hard to witness as her daughter but her lack of depression was a godsend.

Sorry to hear about your dad though. It's a bitch of a thing.

Sorry to hear this OP
My Mum was diagnosed with Alzheimer's last year and an aunt had it a few years ago

Just after diagnosis can sometimes be the hardest time. They know they have it, are angry, then forget and re-remember and are annoyed again

They grieve the loss of their independence - driving, going out alone etc.

You get to know the topics that trigger them and try to avoid them. If they go round in a loop every 10 minutes it can be hard

Later on though, they forget they have it and go into their own world and can be happy. You go along with what they believe and don't correct or interrupt. My aunt used to get in and say she needed to give her Mum 3 rings to let her know she was home safe. She was nearly 90 and her Mum had been dead over 40 years - but we did the 3 rings!

Music can be really helpful for memory and wellbeing

I sometimes sing hymns/carols in care homes and the staff say residents who don't speak all week amaze them when they join in, often word perfect!

There are not many positives, but there are some, you just have to hold on to those

So sorry to hear about your dad it must be very difficult for both of you 💐Every person is different so your dad might not be the same as your grandma. I think as the person with the illness becomes more impaired they can often seem oblivious if they are well looked after and all their needs are met. I knew a lady in a care home who thought she was on a cruise everyday, she used to tell the staff how wonderful it was. Also I know quite a few people who made friends together in their later stages of dementia and would walk round holding hands together. Of course not everyone is the same but I know lots of people who presented like this. People may not be the same as they used to be but with support they can still live a happy life.

My grandmother had it. She was able to be in assisted living for a while, and then a care home. She didn't lose her personality. Her physical needs were taken care of without distress. She was always pleasant and polite even if she couldn't place you. She could do her crossword every day. I remember she refused to wear her hearing aids as she couldn't remember that she needed them. Staff aren't going to force that so you just had to shout. She also thought that her dog from her 50s was alive and was concerned for his whereabouts. That was the closest she came to distress- we had to make up a story and keep repeating it until it went in. At the end, she'd been slightly ill with a cold and been put to bed and she just slept it out. My dad was with her and said it was peaceful.

All my 4 grandparents had very varying experiences with dementia and I would say it was a rollercoaster ride but not all bad, all the time.
3 of them smoked up to the age of 40, 50 & 60 something and 1 drank to alcoholic levels most of his adult life so I wonder if that affected their probability of getting dementia?

My grandad had dementia for 10 years and i understand now that it was probably vascular dementia as he would be stable then have a decline, then stabilise again.
Mainly he was very (i mean extremely) forgetful both in short term memory and in terms of daily tasks - he needed help dressing etc - but was continent until the end. He was generally a happy soul but had no filter and could get angry quickly - basically an enhanced version of his old self.
In his last weeks he unfortunately punched my gran (his carer) which was awful as he was got delirious from pneumonia and died from a combination of that & heart failure at 89.

The next stage would have been a nursing home which would have probably made him unhappy and aggressive, as gran had started to struggle with his needs. So although his death was sad because I loved him to bits it came at the right time for him probably.

My gran then became very paranoid & was sectioned at 91 in an EMI unit and treated for psychosis, where they also diagnosed vascular dementia. She had lived alone but had been refusing family help and neglecting herself for a while plus forgetting how to use the technology she'd been so good with.
After the psychosis went she was just pleasantly muddled and content; we were looking for a nursing home placement when she suddenly died - like my grandad, from pneumonia & heart failure.

My other Nan slowly developed a mix of Alzheimer's and vascular dementia, she was now a happier seeming lady than she had been in her previous life! Cared for first by relatives then as her mobility declined due to arthritis she happily stayed in bed and lived in a dementia care home. When she died of pneumonia & heart failure at 91 (!) the care home staff attended her funeral.

My other grandad was long divorced from my other Nan but I heard he declined from Alzheimer's for 10 years and his second wife had a terrible time as he was very tormented by it - possibly the fact he'd abandoned a family was playing on his mind? I wonder. He died aged 87 I believe of kidney failure.

So sorry OP. My MIL didn’t know where she lived or how old she was at the end, and stopped calling anyone by name, but she was always glad to see us and interested when we told her old stories of her own life. She spent peaceful days at home with her son for a year until she died suddenly of a stroke.
Some types of dementia are more liable than others to lead to violence and aggression. Your dad’s may be different from your mum’s.

OP, I hope that what you can take from my experiences is that dementia is not all bad, people can live happily despite having dementia although they will need help to do so. A lot depends on the course of their illness and how it affects their personality.
On reflection I wasn't surprised that each grandparent was affected how they were because of certain traits they'd had as adults.

My grandad had a very defined loop. He would carry round photos of my nan when she was young and show everyone pics and say he was so excited because he was off to meet her on a date. Always dressed up, always excited to meet this person he had actually been married to for 60 years before she passed. When he had a stroke, he was on the bus to go 'meet her'. Best way to go and we can all wish to be so lucky. :) There you go!

This is beautiful. I hope when we get there, my dad regresses to a happy memory. Thank you so much to everyone who has shared and experience, good or bad. It all helps.

Same as hulahooper2 said . Lost my lovely mam last July to dementia it’s the most awful illness . Sending love to all who needs it ❤️