What happens after hospital for my dear Dad who has Parkinson's Disease?

[knightynight]

My dad has had Parkinson's Disease for 10 years. In the last 6 months his condition has worsened, my mum looks after him at home. However just before Christmas he went into hospital after several falls at home and a urine infection. He is now very poorly with lung infection as well, on drip, feeding tube and not very responsive. We are taking things day by day.

My mum is heartbroken and just wants him home. However, she could hardly cope before and has always dismissed the idea of carers. If he makes it through this, what can we expect? Will he come home and have a care package set up or will he go into a home? I have no experience of this.

I have recently made contact with social services as I had to do something to help mum. But they have not called me back, I've called a few times, I feel this will be an uphill battle. Now that he is in hospital and will be harder to care for when he comes out (according to consultant), does he get bumped up the list? My mum says she will care for him 24/7 if he comes home, but I cannot see how she can do this.

Does anybody have any experience of this? What can I do NOW to help them? I feel useless. I don't live locally but we (dh and 2 ds's) have been between home and mum's all over Christmas/New Year visiting dad and we are going back tomorrow.

Also - as a footnote, the consultant also said he has a risk of aspiration from feeding tube, how does this happen?

I'm terrified of every possible ending to this situation, as nothing seems hopeful.

If your mum wants him home please let her at least try ,SS can set up a care package to help and if it doesn't work then you can always change your mind and go down the NH route . It doesn't sound like the hospital feel he is ready for discharge yet or they would be contacting you / your mum to sort things out . It's always difficult over holiday periods but next week you should be able to speak to the OT and the care manager and you can tell them what you want and see what is available in your area .Good luck.

Bumping this for you as I could have written the same post for my FIL, except that he was only diagnosed 6 months ago but he's now in hospital with a UTI, chest infection, can't swallow, falls etc just like your dad, so it looks like he was a missed diagnosis.

His wife also wants him at home with carers but can't cope with him e.g. pick him up if he falls. We also don't live locally (100+ miles away and a 4 yr old DS) but his wife's family (it's 2nd marriage for both of them) live close by and have been going round to pick him up out of a puddle at 3am when the wife can't lift him.

Realistically, your mum can't care for him at home, however hard that is for her to accept, and she's putting her own health at risk by attempting to do so. Watch out what your dad is telling medical staff as well; DFIL has been telling hospital staff that his wife is fine caring for him when she had a virus and ME and is not well enough to do so.

DH has told his step mother's family that we would like to see him in a care home because he isn't strong enough to go home and live independently. We were clear that his wife caring for him isn't him being independent - he has to be able to walk to the table with a drink, get off the loo unaided etc. which he can't at present.

Thinking of you as this is so hard. It will be interesting to see what other posts you get as we're about to step through the same doorway - we're going down to visit him tomorrow so it would be useful to have some information.

Perhaps contact Age Concern or one of the Carers charities - they may well be able to give you more information about options?

Mini-moan

Thank you for your replies. Dad cannot talk at the moment to tell staff how they cope, he is still so drowsy and he has dementia anyway. I will contact some carers charities as you suggest, that is my to-do next week after the weekend we will spend visiting him and staying with mum.

We are not yet at the point where he is near coming out of hospital so that gives me some time to consider this and also talk to mum about her realistic expectations.

Sometimes I think all of this is not real it's so horrendous, so terribly unfair. I never thought I'd be facing all of this so soon.

Wishing you all the best PeterParkerSays for the weekend, one thing I can say is that the care dad has had from the lovely nursing staff has been exemplary, they have been wonderful and I trust them to look after him the best they can.

That's great news about the nursing staff.

You could try ringing the hospital and asking to be put through to the hospital social workers (or ask the nurses if your father has been referred to them yet). They should be able to advise your father and all of you about possible ideas for discharge. If your father hasn't been referred yet, I would ask the nurse/doctor about doing so.

As far as the feeding tube/aspiration goes, if he has been unable to swallow or if what he swallows has been ending up in his lungs (hence the chest infection), then in his case the tube has gone in to feed him and to provide a way for him to have his medicine. However, it's possible for the food in his stomach, however it gets there, to come back up (like indigestion) to the top of his oesophagus or food pipe. Then because of his poor swallow and reduced mobility, he could still end up with food going into his lungs. I think that's what the doctor was probably talking about. To try and manage this, they may give him his food very slowly, and as upright as possible, and I hope he will be being seen by a physio too, to make sure that he does get as much movement and sitting out as he possibly can.

Thank you Joan that's a good explanation and I have been able to tell mum what it means.

I'm going to call the hospital PALS service tomorrow and see what their discharge policy is and who to speak to at the hospital about care. I have told my mum and sister that dad is not to leave until mum has a care plan in place, she just cannot cope without it.

However we are really not out of the woods yet with dad, he is still very poorly and back on oxygen today, which has scared mum again. They also still suspect inflammation on the brain, as he doesn't respond much.

I sympathise with anybody else going through this right now, it is a very very sad and agonising time. Thanks for your posts.

One thing I did last time my mum, who has dementia, was in hospital was to speak to the ward staff and social workers and tell them that my dad was struggling to cope, had previously taken mum home when he couldn't manage, and that I'd like to speak to them before she was discharged so I could confirm that care had been put in place. I also made it very clear that I wasn't around to care.

They did take this on board, and contacted me when they planned to discharge her on a Friday afternoon with no care confirmed... Wheras dad was so desperate to have her back he'd have said yes, I said no and they kept mum in over the weekend and then everything was sorted.

That's good to hear. I am going to make sure I am around for when they want to discharge him. What care did they put in place if you don't mind me asking?

I have no idea what help mum will get and how she will manage otherwise. We live 60 miles away, dh and myself both work and have children at school. So also no option for us to provide care.

She got 28 days of twice daily carers, which got through the acute exacerbation in her issues and I think is all the hospital based team could arrange.

In your dads case, you need the hospital and community teams to work together to put a long term care package in place. And I hate to say this, but when he is in hospital is the time that you are in the strongest position to get attention on a suitable care package. Once back at home its much easier for additional care needs to be delayed or ignored alas.

I learnt this the hard way with mum. She got discharged in a v poor state in March (and the hospital had said other things would happen) after surgery, and still hasn't had a community SS assessment.

Oh goodness, I feared that it would be a battle. So I reckon I need to push for a community assessment asap and make use of the time I am there to get something organised.

It's so unfair that there are so many delays, or even things not happening. Going to call the hospital right away.

Thanks for the advice.

No problem. You might also want to look for a local carers centre - they will know all the locally available services and how the system works and help you and your mum access everything. They've been a real help to my dad, and nice and firm on 'you are entitled to this, so you should claim it'.

Also, if theres a community hospital nearer to your parents home, then you could ask about transitional care arrangements. The CH are better at looking at people as a couple in terms of their coping, and of course might be easier for your mum and friends to visit.

Actually, I have just spoken to the Maidstone and Malling Carers Project, who were really helpful and are going to contact the hospital social worker to advise my concerns.

As dad's discharge is not imminent, they say nothing will happen until he's well enough to leave and then he will be assessed and should not have a gap in care from the initial Enablement Service to a proper care package - I hope I'm not being naive to think this is true!

I also didn't consider a community hospital - I'm not sure they have one nearby (Maidstone hospital where he is now is about 6 miles from their home) but will look into that.

I feel a bit more positive but of course this is only the very start of this matter. But to do anything right now rather than just worry about it does help.