Help with Nursing Home/Caring at home

What you need to do is to ask for a meeting with everyone concerned before he is discharged.

At this meeting there should be everyone who is involved in his care present and arrangements should be put in place before he is discharged.

It may be that a nursing home is the most suitable place for him where he can get 24 hr care.

You need to be insistent that the family cannot care for him (including his wife) and that there would be a risk if he was discharged to his home.

A link to show you what a hospice should have in place.

http://www.cheshire-epaige.nhs.uk/ePaige%20Documents/ECH%20%20Planning%20Discharge%20%20Leaflet.pdf

I really think you need to be very clear to the doctor what you can and indeed can't do.



Is this common now that hospices have a time li it on admission, it seems cruel to me?

I've been in this position with my late father.

There is one simple fact that you need to know.

Whoever has your father is responsible for his care. If they discharge him home into your care then that's you and whatever help you can can find.

All you have to do is refuse any attempt to shift that responsibility on to you. They will try, they will infer you have no choice, they often try emotional blackmail and despite your father wanting to go home they still have the responsibility to ensure that he gets they care you all know he needs whatever he says.

All you have to say is that you can't care for him and if they wish to discharge him then they need to have a proper care plan/package in place to ensure he gets the care he needs without involving you. You can still be there but you're not tied down as the carer.

Then, in my case they tried to say that it would only be temporary for a couple of days while they sort out the care /package.

However, it's amazing how the urgency goes out of the situation once they've handed over responsibility to someone else. This happened to me and Dad following an earlier admission to hospital and I vowed they'd never do it again.

Even after they had sorted out a care plan for Dad on checking they had assumed that I would be staying at his house and therefore would take on night time care on my own with carer returning during the daytime.

When I pointed out that due to his dementia the hospital had provided additional care assistants to sit with him round the clock in case he tried to get out of bed or remove his drip and asked them when I was supposed to sleep, shower, eat etc. they looked rather shame faced as if to say 'Ah you noticed that did you'.

It sounds very hard hearted, and they do play on this, but I simply refused on the grounds that he need 24 hour specialist care and in the end there was nothing they could do but sort it out.

In Dad's case that took several weeks, odd when they kept telling me it would only take a couple of days. During that time they kept him in hospital and eventually he went into a care home where he had fantastic care round clock.

It was only supposed to be for two weeks but after he'd been there for that time the care home said they were not prepared to send him home as he needed 24 hour care and one person, me, could not possibly provide that.

There were meetings, there doctors, nurses social services and me and all the NHS and Social Services were interested in was making sure they didn't end up funding the care he needed. As a result it took time but Dad had time, he lived for another two years in the care home.

All this sounds like a mad rant against the NHS and social Services but it isn't. Our NHS is a wonderful thing and the front line medical staff and social workers were fantastic and Dad had nothing but the best care by people who are overworked and underpaid. I couldn't believe the case load the social workers had!

My problem is with the bureaucratic system that is slow to respond and is driven by cost and a culture of getting someone, anyone, else to step in and take responsibility while the wheels turn.

I am truly sorry you are in this position when you should spending what time you have left with your Dad not worrying what's going to happen.

Elvisia wrote: »

Thank you so much for the replies and for not judging me. I spoke to the consultant today who said we're in the worst possible position because it's so impossible to tell what is going to happen with his health. He should have already passed away and the fact he hasn't means he has a tolerance to high levels of toxins and potassium and they can't judge what the tipping point is going to be.

However the consultant said, after much pushing, that yes it is an initial 2 weeks then they judge each case. So if he gets slowly worse which is what they think is most likely (also going by the past 3 weeks when he's just slowly deteriorated) they will keep him here. Any consultations will be between everyone and they won't send him home if we disagree and he says he wants to. Or at least that's incredibly unlikely. It was a great meeting to get reassurance but also pretty awful as my Mum was in with me and she sat there sobbing and she only cries when things are at drastic levels.

So the consultant said they would have a meeting next week to discuss how he is by then, but not to panic, and they'd sort it out.

I also agree with the comment about them trying to throw people out without care; Dad was very ill when he first came into hospital and they were going to send him home with no care package because he claims we could look after him. Then I kicked up a massive fuss and they said he'd have to stay in hospital until Social Services sorted out carers, and then he just got really ill and was given 3 days to live. He's got major organ failure, nothing is working anymore and he also bleeds all the time.

Very interesting to hear that whoever has him has to look after him, I've always felt very much it fell on me as his carer.

It does, when you're his carer, but at the moment you aren't, the NHS is. Carers have rights too and that includes the basic right of sleep and food and time off to recharge and relax.

It means that they can't simply be discharged and forgotten. Whoever has him at any given time has a duty to ensure that if discharging a patient then proper care is in place before they walk away. And this is what you have to use to your advantage.

I'm so pleased that you're getting somewhere in what is clearly a very stressful situation.

Good luck.