What influence can I have over dad's care package after hospital release

[vpillow]

My ddad is terminally ill with lung disease - on oxygen 24/7 and really very frail. We don't know how long he has left - in all likelihood he won't see 2016, if that.

He lives alone and can barely walk a few steps. He's under the care of a palliative care nurse who visits him at home. Neither she, I, nor my sister, think he is managing well at home with simple tasks like preparing meals, getting around etc - but he is refusing to consider extra care.

My sister has given up half of her job to help him (he's paying her for this), so she does his shopping, gives him some personal care and does what she can - she has been amazing. She cannot give any more time and neither can I (I work FT in a very full-on job but at least only live half an hour away). The rest of the family locally have been supportive and he gets lots of visitors during the day, but is usually alone at night.

He was taken into hospital a few days ago and has a urinary infection.

Not sure when they will want to discharge him - but, when they do, we (the family and the palliative care nurse) think he needs a proper care plan with other carers visiting him a few times a day.

Could anyone advise on what we can to influence this? He is very strong-minded, will lie about how well he is coping, and will turn down any suggestion of extra help - he is financially comfortable and will be able to pay for care, but he feels it will tie him down to getting up/going to be/eating at set times, not when he wants to do things. It's really about him losing a bit more control I think, but it's so pitiful to see.

Thanks for any advice.

I'm sorry your family are going through such a difficult time. If, as it sounds, your dad has the mental capacity to make his own choices then you, dsis and the health care professionals can only try and persuade him to accept a care packages. Has your dad made Power of Attorney arrangements? If he hasn't now would be a good time before he is too ill to make choices and decisions are taken out of his,and your hands.

If he has the mental capacity to make the decision regarding care then all you can do is persuade.

It sounds like if he may be eligible for continuing healthcare fast track (ask your palliative care nurse) where any care would be funded. This is for terminally ill patients. If he is not eligible now he should be later on. Still won't be able to be forced but would be free.

I'm sorry you are going through this.

Even if he's not eligible for fast track he should still be considered for continuing healthcare which means that his ongoing care needs could be paid for by the NHS. However if he continues to have capacity you will still have the problem of persuading him to accept care.

Thanks for your support. Yes, he has mental capacity and we have financial power of attorney. He's very stubborn and difficult to persuade, but it is so hard seeing him struggle while knowing more help could ease his final months.

I'm not sure I understand. He has enough money that he will be paying for his own care. So surely you can determine his care package.

The advice I got from a very helpful Adult Social Services was that if I was paying I would probably be better off commissioning the care directly. First it might be cheaper. SS had a fixed scale of charges. Then I would be in a better position to negotiate things I wanted, both around the care and also things like having a regular carer rather than a rota.

I also organised convalescent care in a (very expensive) nursing home which felt more like a five star hotel for the first few weeks after my mums discharge. Someone described it as a cruise ship going nowhere. A daily list of activities, very good food with a glass of sherry beforehand, etc. It really helped build her up. They were constantly bringing round homemade biscuits and cake, to encourage those who were not eating. It was too early for my mum to move to a home and she really values her independence, but immediately post hospital it was very valuable to have both the nursing care and the 24 hour cover, and a bit of breathing space to sort proper arrangements out. She was not the only one simply there for a couple of weeks. That said I fully understand why those fighting to retain their independence and wanting to die at home might resist, even if there is a clear time frame.

I am very sorry to hear about your father's illness and the difficult time he is having.

needmoresleep

Having own money and self funding means yes, you can control your own care without the restrictions that going through AS brings.
But dad doesn't want care. He has the capacity to make that decision so money or no money, that can't be commissioned without his agreement.

It's harsh, but refuse to support the discharge if you are not happy with the care plan. Tell social services that it is an unsafe discharge. They will review the care plan rather than have your father blocking a bed.

They can still only persuade. It might be an unsafe discharge without care but he has capacity therefore he can make an unwise decision, even if it puts him at risk. The mental capacity act is very clear. Whether you support the discharge or not, whether you say it's unsafe or not, if your dad remains the same saying he doesn't want it, SS will not force it. Plus, all that will happen is that the carer will be turned away at the door.

has your sister had a carers assessment?

Do you think if he had a PA rather than care agency so he could hire his own personal, maybe male? Assistant he might feel he has more control and be more likely to agree to it?

Also, things like lifeline pendant and meals on wheels are not so intrusive but create a bit if a safety net to keep him going without the intrusiveness of a carer.

Oh, I feel for you, this is such a hard time for any family. I'm in Scotland where some things are a bit different, but I would echo what the posters above say, including thereinmadnesslies .

It sounds as if you and your sister, despite the support you get from the rest of your family are really starting to feel the strain, and actually can't offer any more help.

In terms of persuading him, whilst I see he is paying your sister for her help, it may need to be presented as "in order to help out, we need you to accept xyz intervention/support/carer." You may have to over egg this a bit, and explain, e.g you don't want him to fall & be alone, so things such as accepting a um what are they called? Button on a necklace thing.

It would probably help you if you find out all the options before having this conversation with him, and laying out a good bit of time to have this chat.
If you can find out what worries him most that might help.

Enlist the support of the nicest nurses.

Be prepared for the possibility that he refuses all, and think what your contingency plans are for that. If he has capacity then that's that, unless you are prepared to withdraw all support, which it doesn't sound like. But ultimately it's his choice which is worth remembering.

A hard time, be good to yourselves and each other :)

Thanks all. I have been at the hospital. He wants to die:( but is actually no worse than he was previously. He has admitted he needs more help and the nurses have requested assessments to take place next week.

He has the lifeline button btw -after a great deal of persuasion from us.

He has the lifeline button btw -after a great deal of persuasion from us.