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.

Yes. My wish for 2024 is that my mum dies before she gets too much worse. A stroke or a heart attack are the most likely options. But she's in fairly good health for someone in their 90s unfortunately apart from advanced vascular dementia so I worry about how much more of her faculties, functions and dignity will be lost first.

She was diagnosed in 2019, but definitely had it from about 2013.

According to Alzheimers.org, taking a test is the least likely option and it's not down to the GP. The GP will submit a report and DVLA will decide on what next. Most people are given a new licence for a year and it's reviewed annually. She'd also have to tell her insurance co or the insurance would be invalid without a disclosure of her health.

I wrote a long answer but when I went to get a useful web address for you it died.

Basically it said that the first few years can show few signs of increasing signs of dementia but when it gets a real hold they can go downhill very rapidly

This website was invaluable to me

https://forum.alzheimers.org.uk/

@HurryUpSpringDays when I asked on a previous thread about whether a diagnosis was helpful one big thing was different which is that my dad wasn’t aware. Things are not easy between them. I was very worried about his reaction making things worse. He is now aware which makes a big difference. And has not reacted badly. Also things have deteriorated significantly since that thread.

I do understand your point though that it’s not my choice to make and I appreciate your advice. But I can assure you she won’t be taking any drugs unless we force them down her throat. I think she’s taken paracetamol probably once in the last 20 years. She won’t eat any processed food. Very strongly anti chemicals/drugs etc.

Then I guess what happened to my friends dad was unusual

Op I haven’t read the full thread so someone may have already posted this, but I’ve found Wendy Mitchell’s account of living with dementia incredibly helpful and hopeful
https://www.ageuk.org.uk/discover/2019/march/wendy-mitchell-on-life-with-dementia/

I wish i had known about her experiences when MIL first became ill . We made a lot of mistakes; probably the biggest one was being paralysed by grief and fear and so not planning ahead properly.

i also had a toddler during her decline. I realised at one point that I was watching a kind of reverse childhood in MIL - she was becoming more childlike and needy as my dc were growing up. Just as you love and cherish your children at every stage, even though they are different people, I realised I could cherish MIL for who she was at that stage, and not be overwhelmed with sadness about what she had lost.

I can honestly say some of the happiest moments of my life were spent with her in her care home, singing songs and listening to music and laughing laughing laughing. There is joy in the future for you and your mother, too.

This thread is hard reading for you OP I can imagine - and dementia can be such a cruel cruel disease, and appear so differently in so many different people.

As a more positive story - my step grandfather (it's complicated - my family usually is) was diagnosed with Alzheimers and had a good couple of years living in his warden-supervised flat, with support from various family members, meals on wheels etc and he very much manifested it in the "I have no idea who you are, but you seem decent enough and you keep bringing cups of tea so I'm going to roll with it" way with things. I've got a wonderful photo of him laughing as my then-toddler kids had put the entire contents of the jewellery box on him so he looked like a Christmas tree - he had minimal knowledge of who the girls were at this point, but they were nice little girls so he just rolled with it. His physical health declined before the dementia really took hold - which I think is the best way for things to end, and he passed with a run of chest infections in the end.

It’s great that you have LPA. I agree with others that if you can normalise accepting help, that will be very useful down the line.

Research dementia friendly care homes and how to finance them

Make sure your mother remembers to drink water and eat 3 meals a day.

This is pretty much what happened with FIL.
He had just renewed his licence when he went for another assessment for his dementia.
MIL let slip that FIL had recently had a series of accidents, and he was told there and then that he needed to stop driving.

The problem is, they often don't see how unsafe their driving has got up to that point and the people around them are then in their wyes controlling them, or spiteful.

My mum was the same wrt medicines and had never had any regular medications, she wouldn't even take the anti cancer stuff after she got cancer, her list of rejected medications is impressive.

However she's now prescribed 2-3 things and takes them without incident or question, not something I ever envisaged.

Yeah I'm hoping my mum will die from her unrelated condition this year and I don't even feel bad about it. As much as I say she's having an alright time it's because she doesn't have a coherent understanding of what her life is actually like. Her wishes when healthy and able to choose were considerably more extreme than the law allows for

I'm so sorry op but there is no positive side to dementia.
My mil was diagnosed with it a few months after moving in with us in 2006. It got worse and worse until for the last year which was 2016 she was bedbound.
We couldn't find a nursing home who could take her so had to keep her with us. it nearly finished our marriage and I'm convinced that the stress and sleepless nights caused some of my health issues.

Taco, appreciate the kind offer. I suspect my father's situation is a unique horror so I am somewhat lost for words.

It's good that your father is now involved.

I wouldn't be all doom and gloom. Like many diseases, there are so many variations on how people are affected.
Some old people die of something else.

It's all very well your Mum being anti-drugs, but it's also very selfish.
The likelihood is there are no drugs now that could slow it down but it's worth finding out. The way forward will be for drugs to manage the symptoms, and these vary a lot. (I looked into this a lot at the time.)

By being selfish, I mean the family will bear the brunt of her illness. If there is something that can help with that- delaying or reducing symptoms- she should realise that. It's not all about HER any more.

People with dementia do not have to end up in a care home. My father didn't. He didn't want to and my Mum was able to care for him, even though he was becoming doubly incontinent, because he could get to the loo fast enough.

I know not everyone wants to cope with this, but she was devoted.

The only time we considered a care home (and I went to view one with her) was when he was in hospital after his fall, and it was clear he was very poorly. As it was, he died a few days later.

One thing I'd say is that there is no knowing how soon the disease will progress.
If there are things you as a family want to share, talk about, whether it's the good old days or how much you mean to each other, do it now. Don't wait till it's too late and dementia destroys their understanding.

Given that my relative has survived dementia for far longer than most, if not all, of those other sufferers mentioned here I suspect things have changed since they were diagnosed.

Oh God, this! We (my mum and I) had to petition the dvla and my dad's gp to get his license revoked. In his mind he was still the excellent driver he'd always been, in reality he had become an absolute menace-and kept loosing the car to boot!

And how did the gp assess my dad's fitness to drive? He asked my dad if he felt safe doing it.
Bloody nightmare.

A lady I looked after at home became very violent towards the end of her life, and needed to be assessed in hospital (and washed - she had wet herself for three days by this time and would not let anyone near her to wash and change her).

Anyway, the paramedics came and I asked where the police were - they laughed at me - until they tried to get the 88 year old, tiny little old lady into the ambulance. Then they called for police assistance. The police also wondered why three of us could not get this lady out of her house and into the ambulance.

It took four police officers eventually, plus the two paramedics, and me, to get her safely strapped on to the stretcher, and she hit and kicked every one of us, and there was a crowd of neighbours watching (which was horrendous) because she screamed and shouted and fought all the way from her sitting room to where the ambulance was parked. And she screamed and fought the twelve miles to the hospital, too.

When she got to hospital they sedated her several times before she could be undressed, washed and dressed in clean clothes.

Honestly, do not underestimate how violent some patients can become.

I actually reported a 96 year old lady whose driving was appallingly dangerous to the DVLA.

They told her to go to her GP for an assessment of her mental capabilities.

They then arranged a driving test.

Two days before the driving test, she ran someone over, just round the corner from her house.

Then she backed the car into the people behind her who were trying to get to the accident victim to give first aid.
You couldn't make it up.

Luckily, nobody was badly hurt, but the police attended and confiscated her driving licence.

Her son had to drive her car away from her home, because she did not remember that she no longer a licence. In fact, before he took away the car, she reversed it out of the garage, straight into my car.

Sadly and from bitter experience I’d say you need to protect them from harming themselves or others - often against their wishes. Driving is a good example where you need to stop them driving - possibly much sooner that they deem themselves unsafe…by whatever means necessary. Also be aware that sometimes even minor illness can cause a decline to cognitive powers, but that does usually bounce back afterwards. Being in an alien environment eg hospitals can cause great agitatation/fear/aggression. I really can’t think of any positives but best you can do is mitigate the negatives and don’t feel guilty about getting help and eventually looking for residential care. As they lose touch with reality and become confused don’t feel you need to correct them- generally it’s more comforting to go along with their perception of reality.

A previous poster got it right on POA - I'm sorry I didn't explain it properly. Even with the health POA, you need your mother's permission for the GP to discuss any treatment. It's worth getting her to agree to that - we told my Mum that it was just to get it in place for the future, so you could try that with her. You could still call the GP now and say you're worried and ask if they run any health checks that they could potentially call her in for - if you explain why you're worried they might be able to do something. It's worth a try. If you really are worried about her driving though, you have to do something. Imagine how awful it would be if she had an accident.

We were worried about moving my mum into a care home because we thought that keeping her somewhere she recognised was important. As it is she spends 99% of the time thinking she's at home and in fact being in a place with a great deal more targeted stimulation has actually turned out to be very beneficial.

I don't think it's really helpful to the op who asked for positive stories to then tell her the worst possible scenarios with dementia.

Op, you don't yet know if your mum has dementia. And if she does, there's no way of knowing how it may affect her, as for each person it's individual. Take care of yourself , read up about dementia if you can (Alzheimers Society have good info), do some forward planning with your mum (adapting her home if necessary, introducing the idea of care, connecting her with support eg meeting centres), but then try not to look too far into the future.

Re finding care homes, the CQC website has a map that lets you filter by rating (personally I wouldn't look at anything below 'Good'). Then work your way through the websites looking for dementia specialist homes. Get a brochure for any that look promising, and visit the shortlist.

Look at room layouts - is there reasonable space, including being able to get to the loo with mobility aids. What is their falls system (mats, motion detectors?). Is there enough storage?

How do residents get around - can they get to the rec rooms and out into a secure garden on their own or do they have to call a carer every time, or enter door codes (which they will forget)?

What is the menu and activity programme?

Are there several communal rooms for different purposes or just a couple ofnkathe general ones (my dad's last place had a large activity room, one set up like a 50s diner with drinks and cakes, a living-room style area in reveption with a TV and chance to chat with anyone coming or going, individual kitchen diners for each small group of rooms - as social space and so they could help themselves to snacks and drinks between meals, and a quiet sensory room with low lighting and no noise). Another good one we.looked at was arranged around a central courtyard - completely enclosed by the building so they could have free access with no 'escape' risk, and the corridor around the courtyard was set up like a little old-fashioned high street with a hairdresser, 'post office', shop, cafe, cinema etc.

Watch how the staff interact with residents when you make your intital visit - are they just focused on you or do they have little chats with residents in the corridors as you go around? Are there clear signs to the different areas and on each door? Are there call bells left ringing? How does it smell?

Doesn't matter at this point whether they actually have spaces or not - that changes all the time.

Dementia runs in my family and a close relative is suspected of being in the early stages. I can only hope their experience is no worse than those of their relatives, rather than the stories of unrelenting misery shared on this “positive stories” thread!

This is nonsense