So bloody exhausted waiting for someone to die 2

Well spotted @TheShellBeach !!

Name change fail, I think, @JamieFrasersSassenach

Thank you @TheShellBeach & @Tara336 .

I haven't gone - the carer phoned again to say that a clinician had phoned and spoken to DM and a doctor is coming out to see her. She has agreed to let the doctor in (I don't hold out much hope that she will though.)

The carer has left and will return at around 9pm.

I know they won't believe the things she is saying but it upsets me to hear her saying it (even though I know she doesn't know what she is saying.)

I think going into an elderly persons unit/home would be best, but I am also wondering if this is another UTI and is related to her kidneys - she had stage 3 chronic kidney disease diagnosed as well, and if this will just keep on happening now?

@JamieFrasersSassenach we were in this position last year, my advice is don't go. She has someone with her so she's safe and I found that if you start saying no to carers, SS etc they will sit up and take notice and begin to assist more. At the beginning we were all running around like headless chicken's trying to help DF, but quickly realised that no one in the NHS or SS was actually helping us because we were trying to do it all ourselves.

No one will take any notice of the things your DM is saying the carers etc will have seen and heard it all before. DF was saying similar thing about us and accusing DB of hitting him etc so don't worry

Jamie - no, it isn't wrong for you to refuse to attend.

You won't change anything by your presence and your mother won't appreciate it if you go.

She'll end up in hospital again, and may well be sectioned. Her ultimate destination this time could be a specialist unit for elderly mentally ill people.

But please don't feel guilty. You have a young family who need you, and you're not close geographically to your mother, anyway.

Just hoping for some advice really, DM was in hospital for 3 weeks with a UTI and delirium, plus anaemia and low potassium, she also developed hospital acquired pneumonia whilst in there.

She came home on Monday evening with a discharge package of carers twice a day to assist with washing, dressing and medication and to ensure she was eating and drinking. Yesterday they increased her to 3 carer visits a day because she was getting so confused about her medication. Today she seems to have fallen off a cliff and to me seems delirious again.

Her carer phoned me to say they have called 111 and are waiting for a clinician to call, their manager has told them that they cannot leave DM until there is someone else to sit with her.

There is only me and it will take me at least an hour to get there.

I don't know if I can honestly cope with going over there and being accused of all sorts - she told the carer that her house is not hers because I sold her house. She has accused me of taking all of her keys, told her friend I have stolen all of her money. This is exactly how she was a few weeks ago with her UTI.

If I don't go the poor carer will have to wait with her though.

Is it really wrong of me not to go??

Oh, i’m so sorry @GriseldaBlanco And sorry for not realising, not reading properly, or just forgetting.

Hard to do, but remember the effect of the ambulance ride, the A&E wait, all those strange faces, on a confused and frail person. There is no reason to think the medical outcome would have been any different, and the last few days would have been immeasurably worse. You did a kind thing.

@GriseldaBlanco I’m really sorry to read of the loss of your Dad and hope he passed away peacefully. I think not sending him to hospital was the right decision. Look after yourself in the days/weeks/months ahead.

I'm very sorry for your loss @GriseldaBlanco

oh, we are passed this stage now. my dad passed last week after we decided not to go to hospital this time. exactly as you said the paramedic that came out initially, the GP and the DN all said it was the right decision. still hard to do it though

Unless you have strong evidence that they wish to be taken to hospital, if you've got PoA you can argue against, and you may well find that medics carers all agree with you. Best to raise the question now. It's difficult in the mayhem of a "shall we call an ambulance?" scenario. You can get "not to be taken to hospital" written in their notes. I've just had this done for my father, agreed it with the care home, then had a phone call from the GP next day to talk through it and make sure it was the best thing for him in his current condition.

the times we took them to hospital over the last 2 years of life were horrific, they care was awful and they were distressed by being there

it is not straightforward at all is it. before dementia my LO would definitely NOT have wanted to live through the situation he was in for the last 1-2 years of their life. in early to mid stages of dementia whilst still mobile and not painful, they became terrified of dying and probably would have expressed a wish to be kept alive no matter what. when we made the decision not to go to hospital they had no quality of life at all, could not walk, eat, speak, had no cognition and were in pain

Or based on what they said or wrote down before losing their marbles, even though that was several years ago and without the knowledge or experience that they have now (eg several years ago they wanted all possible hospital treatment but now they've experienced it they hated the experience so much that they never want to go back).

But there is a tendency now to keep alive unless the evidence to the contrary is strong. partly as a result of Shipman.

yes, of course. our situation involved dementia as I imagine many do. so you are guessing at what the person would want, based on knowing them.

No. Firstly, you have to go by the wishes of the person concerned. If they want treatable conditions treated, you cannot override their wishes.

I have only read the first couple pages of the first thread, so I realise conversation has probably evolved. however, on the original point....we decided just not to go to hospital with an infection, because it had been a reoccurring cycle. 999 paramedic who attended and GP were onboard. and it was over within a week. isn't this the normal approach?

so sorry @AgitatedGoose 🌺

@AgitatedGoose

@Jellycats4life the workman was in our house when DF had dementia (but we didn't know) he was dead against the work being done and only allowed it as DM was paying. He still felt the need to supervise/interfere. We have been left with a huge mess to sort out too as he also would never let any work be done, ive spent the last year firefighting things as we discovered the gas central heating had never been serviced and there was a leak, that was discovered a few days after he was sectioned so we've had to replace heating, windows, doors, clear rubbish, start redecorating to make it comfortable for DM.

DF insisted on everything being "functional" so the house has never been homely and DM is enjoying having it decorated to her taste but it's exhausting for me sorting everything on top of work etc. She also says everytime we throw something (gleefully) "oh he would go mad if he knew"

@AgitatedGoose I'm sorry for your loss, it must have been a shock for you.

@AgitatedGoose I'm so sorry to hear your news.

Your story is so relatable @Tara336. Except in my FIL’s case he was too controlling to even allow repairs or a workman into the house. MIL is now saddled with a house in a dreadful state. At her age, it’s doubtful whether she could cope with the upheaval of all that needs to be fixed. She’s arguably better off selling it to a developer who will have to completely gut it and start from scratch. So that’s something we’ll have to get her thinking about within the next few years.

@AgitatedGoose I’m sorry for your loss and all the complicated feelings that get dredged up. It’s OK to feel equally relieved and sad.

Following my post yesterday I’ve suddenly and unexpectedly graduated from this incredibly supportive forum. My Mum suddenly passed away in the early hours of this morning. It’s been a huge shock as I really thought she was never going to be released from the dementia prison. In many ways I feel a huge sense of relief that Mum is no longer suffering but I also feel incredibly sad about the difficult relationship between us.

@Jellycats4life you are absolutely right about the narrative switching some days DM will talk fondly others she's brutally honest about how DF treated her and myself and DB. I have never pretended he is anything other than a bully but same as DM hid it from the outside world as a way of coping and because of the shame.

I knew it was bad but I didn't realise how obvious it was until someone I know was carrying out some work at my parents and DF had been interfering, DH called me and said the person carrying out the work had phoned and said he was struggling to complete the job and he needed DF to leave him alone could I speak to him?

I spoke to DF politely saying workman needed to get completed as he had somewhere to be and I realised my heart was pounding and I was stuttering as the stress of asking him to stop was too much. I was glared at, told I was talking rubbish and he continued interfering. Afterwards the workman said to my DH he had never seen anything like it and that he had been concerned for me as DF reaction to a such a polite request was not normal, that he could see mine and DM fear of DF and he suspected there had been DV at some point.

Theres never been DV but constant psychological and emotional abuse. I guess it wasn't well hidden as I thought.