Alzheimer’s is a dreadful disease

[AtlasPine]

My mum. Nothing else really. I’m too tired.

Oh there are plenty of families like that @GETTINGLIKEMYMOTHER and worst of all, plenty of families where half will say one thing and half the opposite. Also an awful lot of care settings who send the person into hospital at the drop of a hat - but if the decisions haven't been made or communicated well, how are they supposed to manage?

If there is one thing I would go into the past to change, it is the decision by the Daily Mail to campaign specifically against the Liverpool Care Pathway. There were definitely things wrong with how it was being implemented, and palliative care is better than it was back then, but that campaign has left a legacy that it sometimes feel we will never overcome- a genuine belief that 'the NHS' is going to 'give up on' or 'starve' people who are coming to the end of their lives. I'm not saying that neglect never happens, usually due to understaffing. But I think the legacy of overtreatment at the end of life has been pernicious.

Same here.

My Mum had this as well as Capgras Syndrome and we lost her at the beginning of 2021. She was only 72 and her deterioration was rapid. I had to take her to the care home just before the second lockdown (dropped off at the front door) and I was never allowed to see her again except on a video call and then through a window two weeks before she died. I feel so guilty that I kept promising to go and see her but couldn't. She must have thought we'd abandoned her. It really is the cruellest disease.

I'm so sorry, @Newgolddream04
My mum was kept shut in her room during an outbreak at her care home, & was screaming to be let out.. even while ill, she was a very sociable person. I feel that hastened her end. I don't blame the home.. they were doing what they'd been ordered to do. But the residents didn't understand. :-(

Yes, the removal of the Liverpool care pathway was a big mistake, I remember reading that at the time and knowing it was very misguided. Daily Mail continues to have from page news about what will/won’t give you dementia every other day, well thanks a lot arseholes, at least they have found a way to make money off it. Also I think Dr Shipman murdering his patients has done the NHS no favours in making people nervous. Although I don’t think any of his victims had dementia, some were climbing mountains weeks before he killed them.

There is some financial motivation for people with dementia being kept alive as long as possible. The owners of these places all seem to drive big expensive cars. My Dads care home bank account is at Coutts (you need more than a million to open an account there). I have spoken to care staff who have overridden a resident’s previously made decision to stop having food when he was no longer able to swallow despite his and his family’s requests because “the staff couldn’t bare to see him starve to death.” They are fine with houses and assets being sold to cover this now, but when the next generation gets old, generation rent, who can’t afford to retire let alone pay for care, then they will start talking about euthanasia. It is just a shame it will be down to financial motivations rather than compassion.

DMIL made to promise to take her to Dignitas if she developed a terminal disease but, of course, by the time her vascular dementia was diagnosed, it was too late: she no longer had capacity to say, Let's go now.

Three years in residential care and six weeks in hospital, before she was sent "home" where she died six hours later. We were relieved, even as we grieved.

I've cared for several people with dementia over the last ten years... My aunt now has it and is in a care home... We try to go and see her twice a week. She can remember a lot of things from her childhood and teenage years which she loves talking to my Mum about... She has remembered that ds2 was due to stay this weekend and early next week and she was asking a friend of mine who looks after her when he was coming. He is currently testing positive for Covid so hasn't arrived yet. We saw my aunt on Wednesday and explained that we hoped he could visit her next week.

It's heartbreaking what everyone has to go through with this dreadful disease.
My Mum was diagnosed with Alzheimers in 2019 and has been in a nursing home since last December.
I can no longer remember the last time we has a conversation as she now barely talks. I've accepted that I've already lost my lovely Mum and it will be a relief when the end eventually comes.

@PermanentTemporary , so many people don’t understand that the body’s organs can’t cope with food and drink when the end of life is near.

As some doctor once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

I know what you mean will never forget the doctors faces when mum was diagnosed at 56 … when I rang a national dementia helpline the call handler said ‘I didn’t think people under 60 got dementia.’

Plunged into a very strange and isolating world very quickly. I’m doing the same with my mum that my relatives have with their parents. The difference is I’m 31, they’re in their 50s-60s.

My mum should have been a granny, seen me get married, visit me in my own home. Instead my uncle is sticking lots of photos in her room in a desperate attempt that she might one day recognise my sister or myself in one of them.

When the care home staff FaceTimed me last weekend she was just slumped over staring into space completely blank. Occasionally you get a smile or two or three words - maybe once a visit - but nothing else. I got a proper cuddle back in January and don’t think I’ll ever get one again.

It is the single most shit disease possible. But you are right, nobody suspects it under 60.

That must have been truly hellish, I’m so so sorry 😞 . A friend told me a similar story about her mum and I can’t imagine how heartbreaking to not even be allowed into see them again.

Hi all
I wanted to offer my solidarity here
My mum has been deteriorating for some time with vascular dementia
She took a downhill turn and is now in a home
She recognises things and often people but can't connect memories, people, and sentences properly
However, at this moment, although I mourn that loss, I am thankful. She currently doesn't seem upset anxious and confused anymore, simply as she seems to have forgotten what to be confused about
Small mercies 🥺 and love to all

Dementia care is the hardest work in the world and the least worth it. Whatever you do they just get worse, damaging the both of you.

I find the cruel waste of healthy people’s lives very hard to handle. Care must be a paid job.