How long does this hell go on for?

[UnitaBath]

Mum was diagnosed with Alzheimer's 8 years ago but I had been pushing for a diagnosis at least 2 years previously, so I imagine it's been 10 years +

I have been helping my elderly parents navigate this world of theirs almost every day for the last 6 years. I have become their PA in all sense and purpose, the person who has to keep track of everything in their lives, keeping their plates spinning in the air. A role I took on out of love but had zero notion of what I was getting myself into.

Mum has a pacemaker due to a heart condition, three years ago she was diagnosed with breast cancer, last summer she had a nasty fall in the garden fracturing her neck. In A&E we were told the type of fracture she had would most likely kill her within a month. She survived and after a month long stay in hospital she came home, worse than before and now doubly incontinent. The state she was in upon discharge we genuinely expected her to die at home within weeks but she kept pushing on. This winter she had an infection of 'unknown origin' and after a 36 hour wait in A&E corridors (where my father picked up norovirus) she had another stay in hospital which saw her deteriorate further and upon discharge to home her GP prescribed anticipatory medication as she appeared to be coming to end of life. 7 months on she is still here - bless her.

This summer has been awful for mum, the heat has exhausted her and she spends most of her days just sitting in her recliner chair with her feet up, sleeping on/off all day (she has to have her feet up or her they will turn purple/black). She can not speak, just looks at us with glazed expressions, is double incontinent so has carers in 3 times a day which is costing her £800+ per week. Every now and then she becomes animated and will smile and say a few words but it's very sporadic now.

Honestly, what kind of life is this? I cry every day for my poor mum. I love her so dearly and want her to live forever but obviously not like this, this is no life for her, for my dad or for my sister and I. It is such a wicked disease. Why does my mum's poor diseased body and brain want to keep clinging on to life, it is no life at all.

I used to think that it would never end. I hoped for it every day. It did of course, eventually. It does sound with the high number of sleeping hours that you could be getting there.

I do think you should look at a care home, for all your sakes. But yes, it may prolong things. I’m glad that others feel the home worked with them. We felt we had to fight like buggery to get them to leave Mum be. The Respect form was only the first step tbh.

From a professional point of view I struggle too. Interesting conversation with a very elderly person in care with dementia today about views on the afterlife. Carers broke in with ‘you mustn’t say that’, ‘dont talk like that’. At any age, but especially at 90 plus, it is more than reasonable to be unafraid of death, happy to talk about it, and ready to see it arrive.

I'm so sorry OP.

Agree @Dappy777 . This is why AD is important. But equally it is why the powers that be don't want it. Keeping people alive for longer means Much more money is made by that industry. Constant income.

I honestly didn’t know such a thing existed. Can I ask what they charged?

We are on a waiting list for SS to come and do a care needs assessment on mum in the very near future, I know from past visits from them that they won’t be able to comment on any care homes though. I didn’t know private social workers were a thing. I shall go look that up.

I'm glad to hear that I'm not the only one who found this.

The days must be endless and run into each other, just miserable.

It’s disgusting we wouldn’t expect a dog to go on like this yet give no dignity to our elderly .

Honestly he was a Godsend and had an amazing knack of persuading her to co-operate. Comparing him to the other social worker was chalk and cheese. I can't remember what he cost but it wasn't eye watering and it was well worth it.

Did you have LPA? My understanding was they had to respect my views. Even things like the winter flu jab they wouldn't do without my consent.

No, despite begging her to do it and explaining the potential problems Mum couldn’t imagine that she could ever need it. I think it’s very hard if you don’t work in the field or similar to imagine not being able to make your own decisions. (Or else she simply didn’t trust us - the slightly concerning other thought). She was very happy to do LPA for finance but not health. She always said that doctors were good at making sure frail people slipped away. She didn’t believe us when we tried to say how things had changed.

That must be the difference then. It always seems odd when people don't get the same sort of input I got.

I have a friend in this position. Doubly incontinent, completely immobile, eyes firmly shut, non verbal. Doesn’t recognise his wife or his adult DC. It’s already been about six years and his wife has been told he could last another ten. Just being hoisted around and fed purées.

It is beyond cruel.

Dreadful, poor chap.

You really are having a difficult time 🫂

Why was your dad there when it was your mum the paramedics took in?

Yes they can and do. Doctors are obliged by law to consider all life extending treatments. We had this problem for FIL. Repeatedly sent to hospital for various intravenous whatnots despite his being distressed every time the paramedics came to fetch him. We had a respect form in place. The cynic in me also suspected it was unofficial but standard protocol in his nursing home for staff to call an ambulance at the slightest twinge a) because they feared being sued b) it was the start of the weekend and they were short staffed

Because he went with his wife in the ambulance, and stayed with her, presumably.

It’s easy to pick up, particularly if you’re elderly.

Because mum is 83 years old with advanced dementia, we both accompanied her to the hospital, I went in the ambulance with her and dad followed in the car, why would we not go in to A&E with her? Sorry I don't quite understand your question.

Agree. If I look back at the numerous times it’s always a weekend.
inspite of DNR and respect they have an oath to do no harm and short of not eating / drinking (which someone riddled with dementia can’t remember to refuse) they will sustain life as we don’t live in a state with the right to die.

it’s extremely sad and hence why I said be careful about getting into the care system as it can extend life by years - as it has in our case.

This is what worries me.

I do have some concerns and apprehensions about care homes and tbh that is one of them, we have a degree of control for mum whilst she is still living at home which is one of the reasons my sister and I have been pushing dad to agree to a day carer. If mum does have to go into a home I will make sure I have a written agreement for them to respect our wishes.

I do worry with care homes that they are businesses at the end of the day and a lost resident is a lost customer - call me cynical but that's how dementia care has left me feeling.

And the other issue is once a person is in a care home for years it’s very difficult to get them back out and look after them at home again. It really is the most terrible dilemma and I wish I had known the reality of what we were deciding 5 years ago when we moved my DM into a care home.
she would be horrified to know the reality she is “living” in now sadly.

It is. We sat in the A&E corridor for 36 hours, during that time I wore a mask and didn't eat anything (I have emetophobia, it was January and high norovirus season), dad thought I was ridiculous and ate throughout that time and didn't wash his hands that frequently despite me telling him too, he then passed it on to my sister a day later. It was NOT a fun time lol!

Again, this is something we keep telling dad, he seems to have changed his mind recently and is leaning more towards care homes but he is also a very fickle man and will instantly blame others when things go wrong, even if he was the one who made the decision. I have told him he absolutely can not agree to mum going into a care facility then changing his mind weeks/months later and wanting her back home.

Simply that he picked up the norivirus in the hospital where he didn’t need to be.
People turning up with extra family members is creating the very congested and noisy environment you are complaining about!
Would be better if the hospital restricted it to the patient and max one other bperson only.

@UnitaBathI’m so sorry to hear about your troubles.
My FIL has dementia, so I can understand your concerns.
He’s in a home now, but because his behaviour has changed significantly; he’s being aggressive and has assaulted other people in the home. So, my sil is running around like a blue arsed fly to get him into a different home.
And my mil is quite happy to let her daughter get on with it, and not lift a finger to help.
I just don’t get it.

Do you actually have any experience with advanced dementia and elderly parents?

My father wanted to be with his wife, he is deaf and 85 years old so I also accompanied them to advocate for them both. Never once were we told we shouldn't be there.

The congestion was due of the amount of patients admitted not the number of family members there, if you have read any of my replies you will see that I have mentioned most of the elderly people were on their own in the corridors - scared, bewildered and alone.