To take my elderly Dad out of hospital before he dies

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My Dad, 80s, went into hospital for emergency abdominal surgery - thought we'd lost him - but after six weeks in IC and a week on a ward he's looking okayish. His wound still needs dressing, he's got a catheter in and he's being hoisted out of bed onto a chair as he can't stand due to lying in bed for so long; and now he's got another infection, "nothing to worry about" they tell me, and is on more antibiotics.

Dad desperately wants to go home, and that's what I want for him too. However the hospital are talkng about "a long slow road to recovery" - weeks, maybe months, of rehab possibly requiring transfer to another hospital.

My concern is not only Dad's distress, which is considerable - he hates being in hospital and hates not being able to sleep properly and people doing intrusive things to him all the time - but that he'll die in hospital and all that he's been through will be for nothing.

WIBU to tell the hospital that I want him to come home to my house and ask them to put in services like physio, district nurse etc to support his recouperation. This is certainly what Dad would want, with a view to returning to his own home when he's stronger.

Dad and I have a good relationship and I have no expectations that this will be easy for either of us. My main concern is that he's not mobile and could I realistically help him regain his mobility so he can do stuff like getting to the toilet?

I live in a bungalow and have a nice spare bedroom Dad could have. Its just me and my teenager son at home. He loves his Grandad and says he would be okay with it. I can't imaine my son would offer too much support, but he might make his Grandad a cup of tea and tell him about his day

I have a sister who lives on the other side of the country and she'd come and give me a break whenever if needed. I work from home -very part time - so I'm not seeing a reason not to do this. But AIBU or will it just turn into a nightmare?

Yadnbu. If you can cope (and sounds like you can) and you WANT to and your dad WANTS To, then why on earth not?

YANBU.
It will be hard, hard work. He's possibly still not out of the woods, but it's very likely that he will do better at home.
He can always be re-admitted if necessary.
You are more likely to regret leaving him in hospital than bringing him home.
I hope he continues to do well.

Caring is draining BUT you wont get the level of care services you have in hospital though. Your health authority might be unwilling to fund professionals coming out to the house. Getting things like hoists etc can take time - far too long.

Unless you have everything in place before he comes home AND can fund private physios, day nurses etc then I think you are goign to be highly disappointed. Sorry. The NHS just doesnt stretch that far these days.

I reallly feel for you OP and don't think YABU to want to do this. I would suggest firstly having a meeting with your dads doctor/head nurse on the ward to see what they say. They will be able to refer him to social services to be assessed for eligibility for help.You can also just call social services and ask for help. I don't know if your dad has any money or assets but you may want to to check out how that may affect the help you will get. I have to say it sounds like your dad needs full on nursing care - so when the carers are not there how would you cope with hoisting him/moving him to the toilet and so on? Have you considered respite in a nursing home as an interim measure until he has recuperated enough for you to have him at home.It would be much easier for you if he was at least able to get himself to the loo.Best of luck.

You are not BU. We did this for my father. Yes, it was hard but it would have been much harder to leave him in hospital and he was so glad to be among his family. I wish you and your son and your father all the very best.

I think you need to wait until he has recovered his basic mobility skills and then consider it again.

I would. I've had 4 elderly relatives in hospital over the years. In each case they went in and went downhill fast. One went in with a broken hip and died of an infection. Caught in hospital. Without exception they went hungry, thirsty and weren't checked as they needed to be. *

My grandma went in and damned near starved to death. Woman with Alzheimers has food put in front of her and is then left, half an hour later they come back, take the uneaten food away "oh, not hungry love?" YES SHE'S HUNGRY SHE NEEDS BLOODY HELP! my parents arranged from a woman from a home to come in and she took one look and said "we need to get her out of here before they kill her" or words to that effect. According to my parents.

I've been in hospital and seen elderly people calling out for help and it not coming, I've had to get out of my own bed and help someone falling out of theirs, I've given them drinks, alerted the staff to a patient lying in their own faeces

So yeah, I'd say get him out of there. Hospital is not a good place for an elderly person.

*this is not a nurses don't care post. When you have one member of staff responsible for a whole bloody bay (or 2 bays!) , people are not going to get the level of attention they need. This is a not enough staff, bloody damned hospitals not prioritising patient care post!

Also agree with troisgarcons. If you require funding rather than paying for it your self you may be disappointed. My FIL had dementia and had no money so was fully funded.They would only provide care at home up to a point. I think it was someone to wash and dress him twice a day.As his needs escalated we wanted people to be at the house at night to help my MIL as FIL was by then keeping her awake all night and leaving the house . It was at that point they said they couldn't provide overnight care but would only offer a nursing home place.It was cheaper for them to do that than provide home care overnight. There arelimits on what they will provide due to cost and TBH it sounds like your dads needs right now are full on.

It sounds great in theory but I'm not sure you would get the level of care needed in the community. Often relatives would need to stump up some of the costs of round the clock care.
Once he leaves hospital is not that easy to re-admit. Once you take someone home it becomes your 'problem' and in my experience carers can be exploited and left to fend for themselves.
Why not review the situation on a weekly basis. If his care needs reduce so that he didn't need hoisting or regained some independence you could do it?
Just be careful before you move him.

You sound lovely.
Have a frank conversation with the hospital, your dad's GP, social services etc to see how realistic and possible this is. There may be local charities who will be able to offer support too. Age Concern can be helpful in pointing you in the right direction.

yanbu but you might be disappointed at what will be provided out of hospital. My nana wanted to come home when she was dying and it was pretty much my dad and her next door neighbour who did all the caring, with a nurse coming in once a day. It was pretty hardcore, but he was glad he did it, but dont expect anything LIKE the same sort of services as youd get in a hospital. It would be pretty much all down to you

I don't think YABU, but also I think its going to be very difficult to achieve this tbh. Is he still on IV antibiotics? Because you'll be hard pressed to find district nurses that will visit 4 times a day to administer these, as well as daily bloods, dressings, physio. Does he require specialist nutritional intervention?

The OT required to get him home will be extensive too, you'll need a hospital bed, airwave mattress, pressure area care, hoist, medication systems in place. And if he does catch another infection he'll likely have to be transferred back to hospital which might be very detrimental to him.

I'm sorry to put a dampener on things but the community will just not be able to provide adequate nursing, their services are stretched as it is, and unless you are a trained nurse, or can afford to hire one for at least 12 hours a day, I think you're going to struggle to give him the same level of care he's receiving in hospital. It will likely take 2 carers to hoist him, each time he needs the toilet.

Also, obviously without knowing your dads full medical situation, after 6 weeks in ICU, a week at ward level IMO is too soon to be thinking about this.

Having said that, DO TRY. If you can acheive all of the above, then I take my hat off to you. Not enough people take ownership of situations like this and I think you are wonderful to try.

I would do this for my father and I think you are a very good person to want to do this for your father. Your set up sounds as good as it gets. Do talk to the hospital, but don't be railroaded into making a decision that only suits the hospital and not you and your father.

I would say that the level of care you can access out of hospital will depend on your area. My father cared for my mother (advanced MS) at home until she died there and had great local support.

Also, talk to your father's GP - Dad managed to access lots of care because his/Mum's GP was supportive and proactive (and did many home visits). Good luck whatever you decide.

Of course you're NBU. When my elderly parent was (known to be - so a bit different) terminally ill and had become immobile my uncle and his wife and I managed to keep going at home without a hoist until the final week of life. The mobility issue was very difficult - as much from a dignity point of view as the practical difficulty. The Macmillan nurse was prepared to get a hoist organised , but we managed without it. (my parent was a fairly small person) Nurses use hoists to protect themselves from injury, but it must be nicer in certain situations for the patient to be helped without it - less of a slow palaver and fuss.

Hopefully your father's health would get a boost from being out of the hospital environment, but it would be very hard work for you. Lots of luck and best wishes to you.

Batcave - my mum had all of the things you've mentioned provided by the NHS. And OP's father has already contracted a secondary infection - hardly a good level of care imo.

We found that Dad's GP was fantastic. He pointed us in the right directions to access help and arranged for other service providers to become involved.
We are so grateful to him. Do start off with the GP.
Good luck. I'm sure that you will make the right decisions for your Dad x

I wish I'd been able to do this for my Dad. If you can arrange the resources to keep him safe and comfortable, and you won't drive each other berserk, do it. Only if you're SURE you'll get all the help you need, though.

I bought my Dad home from hospital when he was terminally ill. I never regretted it and it gave him a wonderful time. I have to say that we had some help from Hospice at home and the district nurses. Dad hated it in hospital and couldn't eat at all , was very distressed .

He came home on a morphine driver and oxygen and 3 days before he died was on the terrace waving his walking stick and directing the hoardes of children in the Easter Egg hunt.With the right food and pain relief he was so happy.

Yes it was hard but ,for us, it was the right choice. Don't rush things if you think you have time to set home up it makes a huge difference having a hospital bed and air mattress.

Thinking of you and sending good wishes.

Weetabix, you sound lovely and yanbu, will you be able to get your dad up out of bed on your own if you have a hoist? We are trained to use a hoist and you need one person to operate hoist and another with patient, you will probably need carers provided by local authority to assist your dad getting up in the morning and helping back to bed and for any time your dad needs to use the toilet (district nurses cannot provide this service) if you live in Scotland elderly people get free personal care but there is huge demand for this service and often discharges are delayed as this cannot be put in place.
The district nurses will provide any nursing needs such as catheter care and wound care and any assessments that need to be done but as someone suggests could not realistically give iv antibiotics 4 times a day. Again I am not sure if your area provides domicillary physio, but you should ask for a case conference about your dad and discuss all these matters to see if your dad would get the services that would enable him to be discharged.
I hope things go well for you and your dad.

Callisto, that's fantastic, and I'm not saying its impossible, I'm just saying its going to be difficult and very dependant on area. As an example I have been recently involved in trying to arrange a 4x daily visit for a patient requiring IVAB's and we've been unable to do it.

While it is a beautiful idea and I'd urge OP to try her hardest, one does need to be realistic at the same time. Be prepared to have to fight for this.

I can't comment on his level of care, but infections are also acquired in the community too. As well as pressure area damage.

Good luck OP and I'm keen to see the outcome, I hope you can achieve everything you wish.

It depends where you are, but is a move to a community hospital a possibility ? As they are so much smaller (usually 2 wards at most), and tend to just have elderly people, they are much quieter, friendly and personal than the big acute hospitals.
Several of my elderly relatives have spent time in those, and its been really positive for them - they get all the nursing and physio input that wouldn't be possible at home, but its much more homely.

Make sure you talk to the local rehabilitation team and get their advice about all the equipment that's available. When I was struck down by SPD I was amazed at what they had access to. I didn't have to pay for anything.

What does your Dad want? Because if he wants to go home, then he should be supported if at all possible. I'd start by just letting the staff know that that is what you're aiming for - because him going home to your house supported by you is a totally different thing for them to aim for than him being well enough to go home to his own place independently. Talk to the staff caring for him, and keep telling them, so that they can make the appropriate arrangements.

As someone who, until recently, cared for their elderly mother can I give you advice no one thought to give me:

Find your local carer's association. They'll be able to advise exactly what you need to think about and what you could be entitled to regarding local authority help. They'll also be able to refer you to a carer's advocate if needed who will ensure you are not taken advantage of for not knowing every little clause, this will be especially important when social workers become involved.

My mum is going to a nursing home now, looking after her (she is quite difficult and demanding), my dts (age 10) and working became too much. I can no longer offer her the care she needs as I'm ill myself now. I will forever feel a failure and guilty, be warned that this is an emotional minefield.

My dad died in hospital 3 years ago. He had dementia amongst his illnesses (including a broken hip from when the staff didn't put the sides to his bed up.) I was in the middle of fighting to get him better care when he died.

I admire anyone who takes the mantle of carer, until you do it you cannot know what it is like & please equip yourself with as much knowledge & help as possible beforehand.