Hi - From a newbie at his wits end - HELP!!!

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bowlingbun wrote:
Sun Aug 05, 2018 4:06 pm
12 hour shifts are killers. No.1 son has been on earlies this week, and on call too. Called out at 10pm last night! Grandson here so I stayed in the house until he came home again. (No.1 put me in the garage to sleep when he moved back in. However he converted it into a wonderful bedroom for me. When a Building Inspector saw it he just said "Wow!" so don't feel too sorry for me).

However, tell the hospital you are on 12 hour shifts and simply CANNOT care as you are not available to.
Funnily enough Bill had an extension built on to the end of his house 20 years ago which would make a perfect downstairs bedroom. That too is perfect.

I've just been to see him and also with the intention of making it clear that there's no-one to look after him when he gets discharged. He's now been moved to the acute older persons ward which seems a lot better for him than the stroke ward. I told the nurse I spoke to about his unsafe discharge and the fact that he'd be all on his own again. She was horrified, gave me the PALS number and urged me to complain. She also said they won't send him home if they don't deem him to be safe on his own tomorrow.

My confidence in the NHS and our particular hospital is at an all time low but I'm praying they do right by him tomorrow and see he's not fit to go home.
If you have the keys to his house, or he would give them to you, you could, you know, simply go over there, make sure it's locked, then keep the keys. One of our forum members did that when the hospital was trying to get rid of her mum who CLEARLY would not have been able to cope at home.

Hospitals are DESPERATE to free up beds. Can you start discussing 'convalescent' homes, at least as a possible mid-term solution?

And if he does want to be 'at home' and has money, then yes, BB's suggestion of a live-in professional carer would not be a bad idea at all! Certainly you could try it.

A friend of mine gets live in carers in when she needs a holiday. She just hires them from the local private care agency. You could look up your local one, explain about Bill, get some idea of costs etc etc, and then maybe discuss it with him and see what he thinks?
jenny lucas wrote:
Mon Aug 06, 2018 7:53 am
If you have the keys to his house, or he would give them to you, you could, you know, simply go over there, make sure it's locked, then keep the keys. One of our forum members did that when the hospital was trying to get rid of her mum who CLEARLY would not have been able to cope at home.

Hospitals are DESPERATE to free up beds. Can you start discussing 'convalescent' homes, at least as a possible mid-term solution?

And if he does want to be 'at home' and has money, then yes, BB's suggestion of a live-in professional carer would not be a bad idea at all! Certainly you could try it.

A friend of mine gets live in carers in when she needs a holiday. She just hires them from the local private care agency. You could look up your local one, explain about Bill, get some idea of costs etc etc, and then maybe discuss it with him and see what he thinks?
I was talking to my Mum last night and it all of a sudden came to her why he refused the carers help the day he was back at home. He was married for 40 or so years before he met my Mum. His wife needed in home care the year or so before she died and they didn’t treat her very well at all to point where one day he demanded they leave and never return. He somehow ended up working and caring for his wife but apparently it nearly killed him.

I rang the hospital to complain about unsafe discharge yesterday morning. I tried and tried to get the person in charge or most authoritative person there that day but it was brick wall after brick wall. I ended up talking to the PALS service which was the best I could get but they told me only the next of kin could complain and only then with the express consent of the patient. I flew off on one a little, didn’t let her get a word in and told her the entire story. He said she’d let the ward and the most senior person on duty know what happened. She also took his next of kin’s number and mine but neither of us have heard back.

His planned discharge for yesterday was cancelled (if it was ever actually planned) and now, apparently after assessment and finding out that he’s “prone to falling”, they’re keeping him in for 4 days while occupational therapy or someone of that ilk goes into his house and sees what he needs to be safer. They rang his sister in law yesterday and were apparently fishing to see who could look after him. It wasn’t a straight “is there anyone who can look after him” but a series of questions along the lines of “so, who’s this gentleman who keeps visiting him” and “he’s got a Mother at home who’s retired, hasn’t he...” etc etc etc.
If they won't let you speak to the man in charge, then tell the Care Quality Commission about your experiences instead, they need to know.
He’s now getting discharged on Wednesday with a new care company coming in. The hospital rang up his sister in law and told her that he needs to live downstairs so his bed now needs moving downstairs. Occupational therapy were meant to go round his house to see what needed to be done to make his life easier but that never happened. Instead they just waited till I visited and asked us a few questions.

It’s all well and good moving a bed downstairs but he still has to get in and out of it. What worries me is that, as much as he struggled getting in and out of this bed in his bedroom, he had a system in place where he grabbed on to the furniture next to his bed to pull him up and then reached over to the handle on his bedroom door to pull him upright. An awful system I know but no one knew how much he struggled and what he was doing to get out of bed. He’ll have nothing like that in place downstairs and it worries me that they’re not going to put anything in despite me telling occupational therapy this many times. I fear that the plan will be he has a carer get him in and out of bed and if he needs to go to the toilet he has a bottle like the ones used in the hospital. I know how that ends though because I know for a fact he’s been wetting the bed in hospital because I do his washing. Either he either can’t get out of bed or won’t use a bottle because when he wakes up his mind is all over the place. Well...unfortunately his mind is all over the place as it is. I spent 2 hours yesterday listening to him just being totally confused. There’s times when he doesn’t know he’s in hospital and thinks he’s at home, he thinks they keep changing the time on the clock to fool him even though he’s wearing a watch that tells the same time and he was telling me yesterday that 15 of them took him to a marina and put him in a big green boat. Suffice to say I don’t think he should a) be going home or b) left for long periods on his own. His sister in law remonstrated on the phone yesterday with the hospital and said she thought he needed to go in a care home but they were adamant he’s “not that bad”.

What also happened was they were going to get a Parkinson’s nurse to look at him because they said he was shaking but apparently the Parkinson’s nurse is on the sick and there’s literally no one else at the hospital who can do it so that’s not happening now. He also managed to get a small cut on the top of his head but no one knows how it happened.
Do NOT move the bed downstairs yourself. Do NOT do any more washing etc. for him, in fact do NOT DO ANYTHING AT ALL, other than ring 999 when his situation breaks down, as it will probably within hours of coming home. The care agency should monitor him and they will ring 999 themselves if necessary. Make sure the agency realise that they need to go shopping for him, is there any food in the house? Has anyone checked? Do NOT do it yourself.

I once told my mum's hospital that she wasn't fit for discharge, no one would listen. Discharged in the afternoon, Carer called the ambulance next morning at 7am! She was then in hospital for a few more weeks. I know it shouldn't be like this, but it is.
Yes, I'm afraid you have to prove that in fact he IS 'bad enough' to need full time residential care, and can't be 'patched along' with carers coming in and hospital beds downstairs blah blah blah.

It could be, ironically, the the SS/NHS actually have to push him to that point (ie, discharge and almost immediate readmission) to get the 'authorisation' they need these days to 'allow' him to be labelled 'needs residential care'.

I'm assuming he won't be self-paying, and that is why they are trying to 'patch him up' like this in this hopefully unsatisfactory way!
bowlingbun wrote:
Sun Aug 12, 2018 11:14 am
Do NOT move the bed downstairs yourself. Do NOT do any more washing etc. for him, in fact do NOT DO ANYTHING AT ALL, other than ring 999 when his situation breaks down, as it will probably within hours of coming home. The care agency should monitor him and they will ring 999 themselves if necessary. Make sure the agency realise that they need to go shopping for him, is there any food in the house? Has anyone checked? Do NOT do it yourself.

I once told my mum's hospital that she wasn't fit for discharge, no one would listen. Discharged in the afternoon, Carer called the ambulance next morning at 7am! She was then in hospital for a few more weeks. I know it shouldn't be like this, but it is.
Me and my Mum wrestled with the whole "moving the bed downstairs" thing but I had to do it. I get why you're saying not to but the overriding factor for me was this - I'm fully prepared to step back from the whole thing when he gets discharged but if the bed isn't downstairs then they end up getting him upstairs to go to sleep and then leave him alone for the night the risk of him falling down the stairs is greatly increased.

We were going to leave it but that tipped the scales for me. Everything else though...it's on them.