So bloody exhausted waiting for someone to die 2

Thank you so much. I’m incredibly touched by your kindness and this really means a lot to me. The charity I’ve chosen for family donations is the Alzheimer’s Society. They help fund research into this awful disease and also I used their helpline numerous times when I was feeling really bad and had some amazing support. You really don’t have to do this though. The family member has now made a donation after I sent a very terse email and her son has been in touch to apologise about his Mum’s behaviour.

Oh, @AgitatedGoose , I just realsed that this may be outing, so I could donate to the charity without giving her name.

@AgitatedGoose I am so sorry for the loss of your mum, and that it is being made more difficult by uncooperative family members and her wishes not being followed by her husband. Why, oh why, do people feel the need to upset the applecart..why can't they use that energy to support you? Just selfish and all about them, I suppose. I guess there is a blessing there though for you..their actions will allow you to be shot of the whole inconsiderate lot.

Do you mind sharing with us the charity that you suggested to her family ? I would like to donate in her honour...it won't be much, but I feel led to do it for you.

My Mum actually wanted a direct cremation and I wanted to respect her wishes but have been overruled by my step dad. It seems utterly ridiculous to spend a huge amount on a funeral with a handful of attendees. I’ve made it very clear that I want a direct cremation and hope no one decides otherwise.

Re social workers our experience is that the good ones are worth their weight in gold, the bad ones make things worse and there doesn't seem to be any inbetween.

Now we've got used to the idea, my sister and I are pleased our parents specified pre dementia that they didn't want funerals.

Their ridiculous excuse was that they didn’t think they would be able to donate to a UK charity as they live overseas.

I'm really sorry to hear you're having such a time of it @AgitatedGoose. I hope when you get there that the funeral is a time of peace for you.

@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

@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!

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

And thanks @Horsemad x

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 ☹️

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. 🫤

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).

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

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.

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.

@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.

@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!

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....

What happened in the end, @JamieFrasersSassenach?

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

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