Caring for elderly relatives? Pop in for support, a hand hold, advice, whatever you need.

Oh yolo! Another one cheering you on. Gross gross incompetence. Keep fighting.
Pickle, sending you emergency Teflon....
Whatever, hugs to you- Annan, hope things improve.

And, of course Catch 22 - she cant come home without the care package in place or she will lose all the benefits/support that could offer. But no one can say when the care package will be available because they are so stretched and there are only a certain number of new patient slots per day. So she is bedblocking....

thank you pickle just so fucking angry. DB and I are both white, middle class, older, educated, English as a first language, confident, articulate etc etc etc. I dread to think what the experience is like for someone who doesnt have those inbuilt advantages/expectations, and it's not bloody right or fair. I couldnt have done what we did today without DB and its so unfair that those without advocates just have to put up with this shit.

I am going to name and shame: William Harvey Hospital, Ashford, Kent is full of the most incompetent, lying bastards I have ever met. The full details are appalling, I am sure some of the staff are wonderful (but we didnt meet them today). My brother is an absolute hero but the whole story is one of lies, lack of knowledge, lack of interest or even the initiative to try and answer the questions we asked. We eventually went to see PALS, ended up with the deputy head of patient experience, who is now very clear on what mum's patient experience has been like. We still wait to hear what is happening, and but neither of us has any expectation of anything positive. We will be making a massive formal complaint to the CEO, I'm not dicking about with PALS or some kind of patient forum.

The worst of it all today was that after we'd spent 2 hours going from pillar to post we finally went in to see mum - who was stuck lying across her bed, unable to move and very uncomfortable. The bitch staff nurse who had been obstructing us all day came in and I asked did she know mum was in this position? oh no, she only has to ring her bell - which was out of reach. Absolute cow that woman.

Funny though - we met Dr. Chen as previously mentioned, who is clearly about 12, had a polite conversation and DB said something about how incomprehensible mum's discharge arrangements are. Dr. Chen drew himself up to his full height (5'2") and started explaining the complexities of the NHS - to which DB said that he had spent 37 years working for the NHS including discharge arrangements for difficult psychiatric patients and had never seen anything as rubbish as WHH!

Oh and finally, SIL phoned the ward 45 mins ago and DM is to be discharged tomorrow. Given that SIL is 200 miles away and no one has contacted me or DB this info is worth than useless. PLUS I am named as next of kin and therefore they should NOT be giving patient information out anyway. (am more than happy for SIL to be told stuff but it's a breach of protocol). GRRRRRRRRRRRRRRRRRRRRRRRRRR

Thank you so much. Support and wise words much appreciated.

Thank you very much for responding - I'm just moaning really. The one really good thing about all this is that my brother, sister and I are on very similar pages at long last - none of us would blame the others if things go badly wrong.

We do have a financial poa but not health/welfare - she wouldn't entertain it and I would say she always has capacity for her decisions at the moment.

I feel bad posting because really she is in great shape compared to others. Still stressful though.

Oh pickle that sounds hard to take.

whatever say whatever you need here. Rage, vent, whatever you need. You will get sympathy, hugs and chocolate, wine and gin.
Nota yolo sending sympathy too.
Pickle hope the chocolate mountain is holding up.thanks for asking..... things here are ok, I think because I have been guarding boundaries. Dm had cataract op a few weeks back, requiring 4 drops a day. I have refused to take this on, despite numerous guilt trips and knowing the carer is driving past my house while I’m in bed..😮. Dm moaning like hell about the agency lunch carers( not her saintly regular morning one) I have stepped back and realised my siblings will not change or support....
tales from the front line.... post doc this morning, quick whiz around small local supermarket- big treat for dm in wheelchair. “Faggots” she declares loudly near the frozen meat. Very flustered male assistant comes across and says to me that he thought it was an insult addressed to him as he’s gay....... then proceeds to find faggots..... rock n roll here!!

"the person decided to lecture me on how she did love me but that she had a very difficult childhood"

whatever, I would park it. Writing condolences is really hard. I had to do one yesterday because a lovely lovely friend living on the other side of the world died of cancer. The stuff all happened on Facebook with so great pictures and some lovely memories. But really hard to write anything without sounding clumsy, cliched or patronising. From a distance it sounds as if she was trying to acknowledge that her memories might be different from yours. And if not, the emotions you are feeling perhaps needed to be released as part of the grieving process. She was the trigger, but if not her it would have been someone else.

Take care all.

Annan, a family conference without her where you decide:

1. If she stays where she is despite your help/advice you are in no way responsible for what might happen. And that you are not required to facilitate her staying there. Then tell her, perhaps putting in in the form of a letter. I had a similar situation with my mother, except I was against her and my brother, who was also in complete denial. No keys, no neighbour contacts and a flat that was totally unsuitable. So it was a conversation I had with my own family. Do what you can to pursuade her that moving now is better than moving later. If need be make up some sort of back pain or other illlness that will prevent you from making the journey regularly. (I had 100 mile round trips - still do - and they are a killer.)

1. Have things set up for when the inevitable happens. Is there a POA. That is what you really need to focus on. Speak to your local SS and visit sheltered and care options.

My mother fell when she was outside, but apparently got stuck in the bath once and thought she would die there. Had she done I would have felt bad about the panic and pain she would have gone through, but there was nothing I could have done to prevent it. And it would have saved her from the long slow progress of Alzheimers (six year in post-fall with up to another decade to go) which has robbed her of so much dignity.

Love the Irish leprechaun fridge magnets. Perhaps you could get her an army. DM has a gaudy Murano glass clown with a bit missing which she bought in a jumble sale and loves. (She also has lots of nice things but I think, magpie like, the colours appeal.) We manged to get a smaller version when we were in Venice. She loves the fact there is now a younger brother, though has no idea how he turned up. Plotting different versions of the clown's life stories is a good topic/diversion of conversation.

When my mum has had bursts of energy in the recent past she would blitz parts of her house and bin things. And then forget she's done it, and decide someone's taken things (usually me). She now keeps asking where her Irish leprechaun fridge magnet is, trying to work out who must have taken it, and getting them to return it. It is something of a low point to have my own mother thinking I (or anyone else) would steal the bloody thing. So I have been searching for a replacement on Ebay, and that is depressing in itself, as they are hideous, if not malevolent, bloody things.

As someone else says upthread, I have walked into someone else's life and want my own back please.

It's so hard to talk about this IRL as dealing with a parent with dementia is just something to be bourne by an individual with dignity in our society. But the reality is it is hell and I need to offload.

Thank you Pickle and Yolo. Hope everyone has a better day today x

annan arent you meant to be on hols??? l reckon Lewis Carroll and Alice in Wonderland had nothing on all this... big strength xx

Right so mum has definitely pulled out of her house purchase and has announced she's going to stay with her older (demented) sister up a wonky staircase 2 hours away in a different direction. This is news to our cousins and her sister's immensely patient but also elderly partner. A 'wtf' call from my sister resulted in the gem that she hadn't really meant it and would just look for something she likes better than the flat she was going to buy. In a place other than anywhere any of us live. Which we haven't found in six months of looking. She will probably lose her own buyer, which are like hen's teeth in her part of the world, and end up exactly where she is now. At the top of stone steps with a dodgy hip and failing memory 100 miles from me.

Yolo it's the night for ranting you go for it!!
Parallel universe sums it up very well. So pleased you had some opportunities to escape over the weekend. I feel like I've been dropped into someone else's life and I'd quite like to just go back to mine now please.

Curtains though, curtains. Priorities, right? My DB has gone to bed with DM's cat which is prob nice, if rather too warm, for them both.

pickle and whatever - take all the comfort you need from choclate, wine, gin, flowers, cake. and we'll all be with you in this weird weird journey. I honestly feel like its a parallel universe - Friday I drove to Peterborough in insane heat with 2 of my dearest friends, Saturday we attended a festival in honour of her dead daughter (which is weird in itself) Sunday we drove home, had the most beautiful swim in the sea and DH cooked an amazing meal which we ate outside in the garden. And today... we are in the Kafka-esque universe of today's NHS. I'm a huge fan of the NHS, never had anything but amazing care through 2 childbirths, 2 cancers, a broken ankle. But give them an old person and it's like wtf are they doing??? Sorry, ranting must go to bed soon!

I'm hitting the chocolate 🍫.

How are we all doing this?? Is there a hope in hell that any of us will remain sane at the end of all this??? You are all amazing.

Today I'm angry. Lots of anger and the need to do something to shock everyone instead of constantly doing the things / behaving in the way that everyone else wants me to.

Day at work was bizarrely normal but came home to the usual domestic demands and THE most irritatingly irritating blasted sympathy card. It had all the usual about what a marvellous friend she had been and then the person decided to lecture me on how she did love me but that she had a very difficult childhood. Oh right that's ok then and did I actually ask for their opinion???

Sorry I shouldn't be writing this now! I'll regret it in the morning!!!

Thank you all so much for virtual hugs, doesn't feel like we are strangers at all

🌺🌺🍫🍫

yes pickle how are you doing? (probs silly question...)