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

[picklemepopcorn]

Carrying on from previous thread, IF I can work out how to link...

Come and offload your worries and frustration here, and share your experience and hard won wisdom with the rest of us!

OMD!!! She doesn't want to meet my sister now, because sis is only available after 7pm. "Why should it always be at her convenience?".

Sorry, think I may need to cross over to the narc thread!

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

I'm cheering you on, waving pom-poms and wearing a frilly skirt! Go Yolo!

I'm sorry that's been the experience, but do keep stoking the flames of rage. Let it carry you through!

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.

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....

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.

Well it seems that the hospital has rather shot itself in the foot. I tried to put a review on the NHS choices website, but my complaint is 'too serious to publish' and therefore I must follow other routes. Cracking result, I'm not giving up on this one but will keep my powder dry til we get mum out of there.

Oh yolo keep fighting. Otherwise nothing will change for your dm and everyone else.
As you say, what about all those who cannot challenge?
Our local hospital was infamous. But major change was driven by the public - and every encounter I have had there with dm over the past few years has been outstanding.

I will keep fighting, because this has made me so angry, on behalf of those who dont have the ability to complain and fight, or who will let themselves be headed off at the pass.

Just emailed a good contact - he just happens to be the health editor at BBC TV SE... told him I'd rather wait til we've got mum out, but happy to be interviewed etc and ccd the email I got from NHS Choices or whatever the fuck they are called.

pickle for gods sake, your DS is an inconsiderate cow isnt she? fancy only being able to meet after 7pm, anyone would think she might have a job, or kids, or a life...! all round mes amies

So.... We've been in a&e since 6.30, DM got stung by several wasps. Sigh. No dinner out for us! Honestly you couldn't make it up.

oh jeez pickle... 'several wasps' sounds well dodgy, were they on some knd of kamimaze mission?? I do hope you all get home soon and have the comforts of your choice to hand xx

Wow! If it were not sych a nightmare it would be funny.

After rising anxiety levels since January, I seem to have ground to a halt. I keep bursting into tears. Nothing really different to any point in the last 10 years. But I feel I have nothing left. FiL had a seisure last week and was hospitalised but seems ok. Mil has been diagnosed with something but equally seems ok. I see no end in sight.

Finally home, but have hurt my eye. Hopefully it will be ok tomorrow, at the moment I have to keep it closed. Drama central, here. 'Twas a wasp nest which she inadvertently watered. They didn't like it. At all. Chased her off. Pumped her with antihistamine and sat her down. 20mins later she started itching and she has had anaphylaxis in the past. So A&E seemed a wise precaution.

Really identify with needmoresleep comment about bursting into tears.

Mum and dad both in nursing home now and it’s so sad to visit them. They are really pleased to be together but dad is deteriorating fast with vascular dementia plus various conditions. Mum (88) physically very well but advanced Alzheimer’s and hard to see how she’ll manage without him

In the meantime, using their savings to pay. Put the house on the market late June but it’s so slow now likely savings run up before the house sells

Oh my goodness yolo and pickle, what a day! Sending huge hugs and to you and everyone else this morning.

needsmoresleep it sounds like your body is telling you that you are running on empty. What can you change so that you don't end up having a bloody stroke? When I got to that point last year I cut back on the number of visits I was doing, and the Dr prescribed me ADs. Both things helped enourmously.

Alongtheway I am sorry.

I had a serious down spell six years ago in the middle of the crisis that forced us to move my mum. But since then things have been stable, to the extent that I felt like a bit of a fraud whilst everyone else was dealing with pretty awful emergencies.

I think it is the way it never ends. Like playing a real life version of whac a mole. I am not stamping on them fast enough and they are popping up all over the place.

It is hard to see what I can cut. She employs a carer so I have that admin. (Bloody NEST!) My dad bought investment property which I manage, but which I probably can't sell till I find the energy to get a ruling from the Court of Protection, and even then the market is dead. And the dementia continues to eat away at her capacity, though she could live another decade as her physical health is still good. All 100 miles away.

Lots happening at home, not all bad, but which requires my attention, and poor DH is swamped by Brexit. And it is too bloody hot.

The tank is empty!

I dont get the misery, but I get the rage. I am such a narrow wire that the slightest thing can flip me over the edge and I am so ANGRY. Horrible whichever way we go.

Told this morning (after my 6th attempt at phoning ward) that DM is coming home today, and that the nursing team have 'accepted' her. They are arranging transport etc and will call to let us know roughly what time she will arrive.

This all sounds marvellous but I am yet to believe it. Then got a phonecall from the OT to ask what aids she has at home - this was all assessed 3 weeks ago so no idea why it is not in the notes - and that they were looking at discharge at the end of the week. Errrm?? Pointed out this was different from my information and she scuttled off to find out. so who knows?

She is now officially home, and expecting/promised a nurse visit within 4 hours. At least I dont have a 40 mile round journey for a bit, or until she falls over again of course. Now to sort the care plan....

Good luck!

Teary vs angry? Which is more effective? Angry if you need to get stuff done. Teary if you need to step back. Perhaps.

Oh crikey! Hard to keep up.
yolo hope nurses do their stuff and then you can follow up with the hospital.
pickle hope things are improving- you couldn’t make it up
nota, anna, sending strength and gin
whatever keep strong. We are all behind you- and needmore it does sound as if the past years have really left you with nothing to fall back on. What fuels you? How can you replenish?
Teflon, gin, chocolate etc to all.

you are all so bloody lovely (I have said this before...). This isnt what we signed up for, is it? We are not mopping the odd fevered brow we are doing the whole damn thing while coping with our own lives too and trying to keep roofs over our head etc.

DM happy to be home - but already getting demanding and shouting me down. DB is golden boy. First nurse visit came, as promised, within 4 hours of her arrival home. Lovely woman. Two visits am and pm tomorrow to assess getting up, out of bed, washing blah de blah plus physio and prob a friend will drop in too. Already been asked could I pop in 2-3 times a day (no, that's what carers are for) and she is panicking about being alone in the house when DB goes home on Sat. Tough love I am afraid: the assessements are to establish whether she is safe; they can provide an overnight carer if she is deemed not safe - dont know how long for, but I cannot do it.

Still going to go ahead with complaint though!

re the feelings of total drainedness (is that a word?) I think the only thing is to try and take a selfish break, even if only 30 mins reading a book or whatever, or being totally alone with no one asking you a stupid question. For the tears, it's not happened to me re DM which sounds awful, but in discussion with DB we both agree that death would be a positive release for her - unfortunately its not going to happen any time soon as she has the constitution of the proverbial ox which just ramps up the stress.

So I dont know the answers, and I guess if any of us did we would be sharing them left right and centre. What I do know is that all of us are doing the best we can with the hand we have been dealt.

yolo 🌺🌺🍷🍷🍫🍫