Nice people thread part 4 - sugar and spice and all things

PasturesNew

vivatifosi wrote: »

Sorry to keep asking questions Pastures, but are they asking for meds all the time because they are in pain? If so, maybe the doc or nurse should be coming in regularly, or they should be in a hospice where pain can be better regulated. It is very hard to tell someone that it isn't time to take their tablets when they are in the greatest pain that they've ever experienced in their lives. If it is that sort of scenario you are up against, please, please discuss with the docs.

The M People said of the painkillers "take as many as you need"... I am controlling the rest. The old decided last night to not wait for me and took two of the wrong sort, not supposed to take those after lunchtime as they'd interfere with sleeping ... but the old randomly picked them up and took them as all he could mentally cope with was "take tablets" ... so sneaked off to take the ones they decided upon (not thinking rationally + a lifetime of being a control freak).

I asked about an H place and was told "No, you're able to look after yourself, just can't be trusted with meds, we keep people at home"

Today we've swallowing problems. Can't eat, can't swallow meds. Lots of "choking" sounds, lots.

"discuss with the docs" - I've no idea which docs, the M people would go to an answerphone and they'd come tomorrow (M people is off on holiday after tomorrow); Hospital 1 of 2 is on holiday, so that goes through to answerphone and they'd not phone back until tomorrow probably. GP is unsympathetic - and we've missed the phoning in system, so wouldn't be able to get to speak to a GP until tomorrow now.

It's just me, my list, the clock, the meds.... and just hanging in there. Big appointment at Hospital tomorrow.

It's also been 5 days since I phoned for care assistance (Adult SS), they said they'd phone back, for somebody to make an appointment to come; no call. I asked M people yesterday and she said "Oh, they're very slow - leave it a few days then call". Today I called, all I got was "it's been allocated to the team, but not to a person, I'll get them to call you".... and even when allocated to a person, they'll only phone to make an appointment, which could be next week by now.

vivatifosi

Well the big appointment tomorrow is a good thing, hopefully you will get some more information out of that. I've been reading the performance standards for Cornwall CC and they supposedly work closely with the NHS on the assessment process, so they may be able to answer some of your questions about the council too and how that works:

http://www.cornwall.gov.uk/default.aspx?page=5042

Good luck Pastures, we are all thinking of you.

PasturesNew

vivatifosi wrote: »

Well the big appointment tomorrow is a good thing, hopefully you will get some more information out of that. I've been reading the performance standards for Cornwall CC and they supposedly work closely with the NHS on the assessment process, so they may be able to answer some of your questions about the council too and how that works:

http://www.cornwall.gov.uk/default.aspx?page=5042

Good luck Pastures, we are all thinking of you.

Oh ... they're failing on the first item in the list then. "You will be told you are being assessed, and how long it will take." ... or maybe I am not even at that stage yet. I am still at the "not knowing WHEN we will be assessed", which is before that list.

PasturesNew

I am finding there are lots of theories that 'help' is out there, that 'care' is available, that 'support' is out there.... trying to actually get any and be vaguely out of the fog is a different ballgame.

I suspect we might have 'lost' our old before the initial assessment occurs.... the other old said to me this morning "the old's not got long now ..." and fears it's imminent... like today/tomorrow. I've said "not on my watch and I'm here for a few more days..." but we have absolutely no idea if we're talking a day, week, month, or what. I am completely having to make up all answers I give out in trying to keep things on an even keel and get through each day.

vivatifosi

PasturesNew wrote: »

Oh ... they're failing on the first item in the list then. "You will be told you are being assessed, and how long it will take." ... or maybe I am not even at that stage yet. I am still at the "not knowing WHEN we will be assessed", which is before that list.

That's exactly what I thought when I read it. Could you print it out, take it with you and ask where you are in the process and how long it would take? I'm sure it won't do you any harm for them to know that you are aware of what their standards are. Asking when the assessment will start if you aren't on the list yet is also a reasonable question.

PasturesNew

vivatifosi wrote: »

That's exactly what I thought when I read it. Could you print it out, take it with you and ask where you are in the process and how long it would take? I'm sure it won't do you any harm for them to know that you are aware of what their standards are. Asking when the assessment will start if you aren't on the list yet is also a reasonable question.

Not easily, I don't have a printer ... and the app is at the Hospital, we're not even on that Adult SS list yet. The Hospital will say "that's not us, ask Adult SS"

Generali

PasturesNew wrote: »

Not easily, I don't have a printer ... and the app is at the Hospital, we're not even on that Adult SS list yet. The Hospital will say "that's not us, ask Adult SS"

That's exactly why you need someone to go into bat for you.

You're getting screwed by the system: NHS say it's for social services and social services say it's not their problem. They'll keep giving you the run around because that keeps the problem with you not them. The key is to make the problem theirs.

Are you in touch with a help group/charity? If not then you should be to help both yourself and the olds. You need IMHO to make this someone else's problem, not yours. If you don't do that then nobody else will step in for you. That's my experience anyway.

Feel free to PM me and I'd be very happy to help in any way I can.

vivatifosi

PasturesNew wrote: »

Not easily, I don't have a printer ... and the app is at the Hospital, we're not even on that Adult SS list yet. The Hospital will say "that's not us, ask Adult SS"

They shouldn't do that because they have their "Single Assessment Process" which is shared between the NHS and the Adult Care team at CCC. If you don't have a printer you could also ask:

"I understand that you (ie the NHS) operate a Single Assessment Process with Cornwall CC. Can you please tell me where we are in that process and how long it will take?" (or words to that effect). "I am particularly concerned that lots of people are saying that I should be getting support and that support will come but I need to understand how and when. Please also understand that I'm an Aspie and find black and white answers easier to understand, it is therefore very important to me to understand how this will work and timescales, and the people involved".

PasturesNew

Generali wrote: »

That's exactly why you need someone to go into bat for you.

You're getting screwed by the system: NHS say it's for social services and social services say it's not their problem. They'll keep giving you the run around because that keeps the problem with you not them. The key is to make the problem theirs.

Are you in touch with a help group/charity? If not then you should be to help both yourself and the olds. You need IMHO to make this someone else's problem, not yours. If you don't do that then nobody else will step in for you. That's my experience anyway.

Feel free to PM me and I'd be very happy to help in any way I can.

Not in touch with any help group or charity... all of this came out of the blue just 2 weeks ago when the old was on a course of chemo and at the end of that suddenly deteriorated and became (overnight) unable to eat, move out of the chair, walk, do anything ... at which point it was also realised that they'd been covering up the fact the other old can't do anything themselves for years.

Most people have months to slide gently into the system, or are already somewhere in the system. We literally woke up 2 weeks ago to find ourselves in this position.

I don't even know where any help groups/charities would be... no idea where to start. No clue whatsoever... I'm useless really.

PasturesNew

If I hadn't been here, the olds would have been foraging through last week's bins for green/stale bread by now.