So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

@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.

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.

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??

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.

@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

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?

Name change fail, I think, @JamieFrasersSassenach

Well spotted @TheShellBeach !!

If I don't go the poor carer will have to wait with her though.. She’ll get paid, though. Which you won’t.

I know, I just feel bad for the other people waiting for their call. But I know that is not down to me.

What happened in the end, @JamieFrasersSassenach?

I stayed at mine. The out of hours doctor came to DM's house, tested her urine - positive for a UTI (again!) He has left a sample pot for her to fill and take to the GP on Monday - from what I can understand the carers will get her to fill it and then they will take it to the GP surgery. The doctor told her to drink lots and lots of water.

I've come to see her today - at one point she became very confused & angry, I got her to drink 2 big glasses of water and she quickly became less confused/angry.

We have been shopping this morning and bought a big pack of bottled water to encourage her to drink through the day. She's eaten a big lunch and has a ready meal to have for dinner - the carer will oversee her cooking it in the microwave if needed.

I think if she keeps her fluid intake up she might be ok 🤞

I'm just hoping that if she's prescribed some antibiotics she will take them....

@JamieFrasersSassenach so glad that you at least know what is wrong now. This situation is very hard to cope with and we are all funding our way through it as best we can. The support on this thread is amazing and there's also some good advice. It is very hard when you hear all the awful things being said my DF didn't say those things about me but my DM and DB were accused of stealing money, hitting him all sorts none of it was true obviously but it does seem to be a common theme with dementia patients but I have no idea why. I'm not sure why DF said the things he did about other members of the family but not me its all very strange.

We had to have DF sectioned and on the day he was taken to the MH unit he told the psychiatrist my DB hit him earlier in the day! It absolutely did not happen I was present all day and DB had never been alone with DF!

@JamieFrasersSassenach I hope you’re able to get your Mum to drink more. I think UTIs are common with people with dementia and make the condition much worse. The false accusations also go hand in hand with this awful disease. My Mum stopped recognising my step
dad and was really aggressive and accusatory towards him.

Following my Mum’s death a few days ago I’ve been running round doing all the admin and arranging the funeral. I’m an only child so everything falls to me. There will only be around five of us at the funeral and two of those are Mum’s immediate neighbours. I feel so disappointed in my Mum’s side of the family as non of them are coming and I’ve had no support from them whatsoever. To make matters worse I set up an online tribute page with a charity of my choice to donate to. The charity I chose has really helped me in terms of their forum and helpline. Now a family member has said they’ll make a donation to a charity of their choice which isn’t even based in the UK. I’m absolutely furious at what seems like a distinct lack of respect for me.

This thread is a godsend. My sympathies to those who have lost their loved ones and those still in the thick of the horrors to deal with along the way 💐☕️🫖

We’re currently trying to step back and let carers and SS step in (following DF having a hospital stay) because of the same as @Tara336

This resonates so very much:
At the beginning we were all running around like headless chickens 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.

We’re all exhausted and @JamieFrasersSassenach I was struggling to scrape my sympathy barrel for the carer saying how difficult it was now DF is set up living alone… yes it is harder, but 1) they are being paid, 2) they get to leave, 3) it is harder now because they can’t just arrive for their time slot then leave at the end of their time slot knowing family will deal with whatever DF is struggling with on any particular day.

This care is mid way through NHS reablement and SS are saying Care Agency should help with reassessing DF after his hospital stay and I think Care Agency are going to say SS should reassess and it’s a merry-go-round.

None of us want DF to bounce back into hospital but we have tried very hard to set him up for success and now must let him have to ask for (and accept) help from the carers. DF doesn’t listen to family, can be unpleasant and difficult to help. DF needs reablement to actually reable him.

@AgitatedGoose I’m so sorry you’re having no support on this phase of your journey 💐

Does anyone have any tips for dealing with social workers? My DM’s one has been a fright (and for her facts wrong three times which has led to more stress than we need ATM).

Make sure you get everything in writing from the SW.

We were lucky, Mum's was a gem; really helped us but I can imagine the stress if they're not great. 🫤

With any luck we won’t need her much longer. Well, when I first posted on this thread I was asking about live in caters saying we wouldn’t need them for a while. My mum then had a stroke and a fall and has bypassed the carers and will be going into a care home within the week (as soon as a bed becomes available which we’ve been told will happen at Easter). That’s quite the meal from a reasonably independent Mum at Christmas to someone who now isn’t ☹️

And thanks @Horsemad x

@ADCisntme It is shocking how quickly things can change, once they start to deteriorate. 😕

@ADCisntme

PS, I think your Mum will still have a SW once she moves into a care home.

My Mum's SW changed to a new one once she went into the home, although this may have been because she was a resident of Wales when she was admitted to hospital but eventually became a resident in an English care home, so it may have been the change of Health Board that caused that.

We didn't really get to have any dealings with her new SW because Mum died soon after we were told about the change over.
The original one was excellent though.

@ADCisntme we had a fabulous SW initially who helped get DF sectioned, he even checked up on us a few days later to make sure we were OK. Then we were allocated a new SW from another team and god she was awful! Rude, unhelpful and disinterested I was told by the staff at the MHU DF was on that every other SW was proactive in helping moving their clients on to nursing or care homes except ours who didn't return calls and just disappeared off the face of the earth. I complained constantly and made a huge fuss to the senior SW and even caught out our SW lying! In the end I successfully got a new SW when we had a meeting with her and her boss.... and she didn't turn up!

@AgitatedGoose I'm so sorry your having such a hard time. Your DM family don't sound great! Why on earth they can't just donate to the charity you have chosen is just rude