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.

@saraclara agree that even as things progress, the patient can take joy from things. Dad enjoyed his garden to the end, enjoyed watching rugby on the telly, liked his food and endless cups of tea. Enjoyed looking at old photographs.

It may not be helpful @saraclara but it’s truthful, however many sweet stories you may tell about your Mil.

So if she hasn't had a diagnosis how do you know she has dementia as opposed to say a UTI which can cause similar symptoms?

My mum had vascular dementia. She had very little short term memory but she was still very sharp and totally lucid until she died, from cancer in her eighties. She stayed in her home as it was familiar to her and had help from us and from carers. Over the years she built up loads of systems to manage her memory loss. The consultant at the memory clinic said that she was quite amazing and this was due to her obvious intellect. Mum used to complain that she wasn't neatly as smart as she used to be! She was also incredibly positive and a joy to be with. I still miss her. It may be your mother follows a similar path.

OP asked for positive stories. I gave her one (or at least some mini ones that formed part of a longer and more varied story).

They're is nothing positive about dementia itself. But the journey for the family isn't always 100% grim. And I understood OP to be asking about that.

The dementia story of my gran was a whole different kettle of fish. But OP didn't need to hear a whole catalogue of those stories, when she asked for positive ones.

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.

I can highly recommend Somebody I used to know - by Wendy Mitchell . Wendy was diagnosed with dementia and writes about the experience from her side. It really helps see things from the other side. She's a lovely woman. She gave a talk at our group a few years ago.

@Doughnut100 I’m sorry to hear you’re in this situation especially when you have a young family. Dementia is hard and it’s an awful disease to watch a loved one suffer. I don’t agree with putting your mum in a home immediately- the new surroundings and loss of ‘normal’ and trigger the decline quite rapidly as all familiarity is gone from their own home. Make sure she doesn’t have a gas cooker or fire - if so disconnect, take away the heavier garden tools etc so she is safe at home. Get the doctor to issue a letter to revoke her license and try explaining to her and research together. Try and hold off on the care home until it’s much worse and focus on multiple carers if you can. If possible maybe she could have a gardener to help her, someone to spend time with and do jobs together.

Dementia is cruel and unfortunately people can live a long time with it. My grandmother had it for 15 years, the last 10 they kept her alive in a care home constantly pumping her full of medication. Also an uncle and aunt, but luckily my family were more aware of dementia and how to handle it with them. Also if you’re thinking about moving her to a property closer to you, this has a similar affect to moving into a care home- loss of familiar surroundings and routine which can cause the dementia to become worse rapidly.

Sending you love, this is such an awful
illness to watch

My dad has dementia which was brought on overnight by sepsis, a stroke and an amputation 7 months ago, so it's been a very sudden change.

He has some days that are better than others and can do things at home for himself like make a cup of tea or have a wash. He'll never be able to be independent again, we can't let him go out alone as he doesn't retain any information and can't communicate properly with people.

I've become much closer to him in the last 6 months, which is a positive. But it's hard. He's fortunate to have a very caring partner, and I try to give her some respite once a week. For a time I was going most days (I live an hour away) and it really took its toll on me. I know its going to get worse and honestly hope he doesn't live a long life because there's already so little he can derive joy from.

My dad did ok.
he was always in a dirty in where he was “ looked after “ by mum though and had a sunny disposition that pretty much lasted.
“People taking things “ made him cross ( ie I put it down and haven’t a scooby where ) .
mum had him at home as her health failed and she died but sensibly had hooked into support systems so he went to a day centre once a week and when she got admitted urgently he could go and stay for respite etc.
when mum died we moved him to a care home near us - hard as his friends were important to him but they were also very old and crumbly , and would be able to visit much or want to do so when he stopped recognising them etc.
the home had its issues but overall they were minor - he ate better ( mum shared a 1 portion ready meal as she wasn’t hungry and he didn’t know if he’d eaten or not !) walked more and went on outings.
we saw him lots and after about 9m he deteriorated pretty quickly and died over weeks.
he didn’t mind “ school dinner food “ and mum always chose everything for him including his clothes , so none of that bothered him.

all in all he did better than mum at end of life. We should have stopped active treatment/ repeated admissions several months earlier. Yes she would have died sooner but she didn’t have any real enjoyment - well except the spark of naughtiness when she had a tiny Bailey’s , and the lovely Italian night sitter who made her egg custard in the wee small hours ❤️

@Doughnut100 sorry to hear of your worries about your mum. It is helpful to get a diagnosis as it can open up possibilities for support. When we (me +siblings) had similar worries about my mum we wrote to her GP about our concerns and he arranged for the GP Practice Nurse to invite her in for a general MOT (bloodtests, weight, blood pressure etc) and told her that everyone routinely gets this kind of checkup at her age. She also gently asked a few questions to check mum's cognitive function and as a result of this mum was referred to the Memory Clinic for further tests and a diagnosis.
Not sure if this kind of move is needed in your mum's case, but it really helped in ours.
Sending lots of support as it is a difficult and worrying time.

If she hasn't/won't give up her license, I'd make sure her keys got lost.

Yes, she did. She absolutely did.

There is no point sugar -coating what is a horrible, progressive medical condition.

She needed to hear the truth.

Far too many people believe that dementia equates to a slightly dotty, but generally sweet and eccentric old lady.

The reality is very, very different.

And despite the fact that the actual patient won't recall the majority of the middle to end stages, their relations will - especially the luckless daughters who have to cope with everything.

I think you need to try and push for a diagnosis rather than self diagnosis as there are a number of neurological conditions that can affect memory and processing.
My dad has PSP which is more like Parkinson's, but we thought it was dementia for ages.
I'll be honestly, dealing with cognitive and physical decline is rough. I'm so sorry. What support do you have in your personal life as that will really be what you need. I do a lot of travelling back and forth to my parents and I am drained and exhausted (also have young kids) but knowing I have my husband and friends around keeps me going. My brother is also a massive help.

Google Chris Roberts.

He's amazing. Does all sorts of campaigns & keynote stuff.

His dementia is quite difficult for him but he's done a lot.

I'm so sorry your Mum's reached this stage. It's incredibly tough. Apologies if someone else has said this already (no time to read the whole thread!) but as you have POA call her GP. She needs to stop driving and if she won't listen to you, you need help to get that sorted. Make sure you say words like 'unsafe' and 'potentially dangerous'. Basically if your mother won't listen, you need help and the GP's the first call. Stopping her driving is vital as a first step. I'm sure she'll hate it - my mother did, but you absolutely have to get this done.

My mum has it, I'm her main carer. She's generally good natured and although it's sad watching her lose many of her abilities she's still fairly coherent when it happens and is generally in good spirits. I don't love all the personal care but it's not as bad as I imagined it might be.

It's still a worry because there's other health concerns that are difficult to address, but if you can come to with a good system and there's a few people who can help then it doesn't have to be that hard. My mum is pretty immobile so we've never had to worry about her running off. I accept we've had a pretty easy run compared to some

A friend of mine is having a totally different experience but her parent is perpetually angry and is especially triggered by my friend

On the driving thing. Many people in the very early stages of dementia can continue to drive. It's not as automatic as dementia diagnosis = immediately stopping driving. It depends on the individual. My dad continued driving for quite a while, the whole "muscle memory" thing of the mechanics of driving and watching out for other drivers etc etc was absolutely not a problem for him. The issue was forgetting whether he was going to Tesco or the chemist. He was very rarely in the car alone even before his diagnosis, and eventually did stop driving.

But if you have been driving for 40 or 50 years you don't suddenly forget how to do that safely as soon as you're diagnosed with memory loss. It's the shorter term things which are generally affected.

I think there can be more benign forms of dementia, yes.

My dad had hallucinations and noises in his head. It was pretty traumatic TBH - for everyone.

With my mum it was difficult to deal with in the initial stages - I suspect we could have all handled it better but it was very new to us at the time. I guess she was aware that things were wrong but was frightened so pretended there was nothing wrong and argued when we tried to arrange help . At some point she became very docile - a sweet old lady who smiled and said 'I don't remember'. Easy to deal with - but no longer my mum . Mostly she appeared quite happy even when I don't think she recognised me any more .

We had live in care at home after my dad's physical health problems meant he was in and out of hospital and unable to look after my mum. When dad became bed bound we arranged a care home for both of them . I actually think the care home was better for mum than the support at home as there were so many activities - but there was no way they would have left their home until it was inevitable.

I think it would be very difficult to manage on your own until the end as the body closes down physically too. Aside from incontinence my mum ended up in a wheelchair and unable to swallow properly . We lost her a year ago - and it was timely really .

My dad, a FIL, GPs, my mum, are all the people I have known closely who had it and yeah it's never nice but everyone's experience was different as was the experience of the people who cared for them. The OP is asking for positive stories, they are probably all too capable of imagining the horror show it can become

My mum had it. For years she was just forgetful/eccentric, and we masked it with her saying 'everyone gets forgetful when they get old'. She fell and broke her hip which was a trigger for a carer to come twice a day when she came out of hospital. Her walking was very bad from then which meant she sat most of the time. We gradually increased the carer visits to 4 times a day. Her memory got worse and worse and she had a big stroke three months before she died. We brought her home from hospital and she just wasted away in bed with the tv on. She was rarely agitated, had the same carer until death. It was awful for us but not really that bad for her I think.

My mum gave up driving of her own accord- then forgot she had and accused us of keeping her prisoner in her own home.

Mine was the same, simply unable to remember how to do the simplest things. We were driven mad by a relative (one of those who ‘knew’ it all) who kept saying, ‘You must make her do this or that - use it or lose it!’

The PITA woman just didn’t or couldn’t understand that DM* had already lost it.
*Someone formerly very capable, who used to mange her own share portfolio and check current values every Saturday in the business pages!

A couple of posters have mentioned Wendy Mitchell, this is another of her books, which I really need to pick back up.

https://www.wob.com/en-gb/books/wendy-mitchell/what-i-wish-people-knew-about-dementia/9781526634511

A while ago I did the Dementia Friends session by the Alzheimer's Society. This was a refresher. If I'm honest it was incredibly uncomfortable as the course leader was basically saying that living with dementia was wonderful and offered a life of new opportunities. It wasn't so much positive stories, more that nothing will ever be difficult. (The previous course leader was not at all like this)

I found this book helpful - Contented Dementia by Oliver James.