Christmas in hospital - AIBU to feel so disappointed and not know how to make the best of it?
Mogs43 · 21/12/2019 12:56
My father is terminally ill - as an only child of divorced parents I am his main carer (as well as working full time etc). Unfortunately he wasn't very well at the beginning of December but is now much improved. However I was told yesterday that he can't be discharged from hospital because the council can't get a care package in place by Christmas. I dont know why but it has hit me really hard. I can't stop ugly crying etc. This is likely to be his last Christmas and I had wanted to make it special. Now it will be spent in a grotty, dark, dirty hospital room (the tiny window looks out onto a wall, the floors are sticky etc -it feels just like hell). This wouldn't matter if the staff were upbeat etc but most are quite miserable/lots of bank staff/short of staff/under pressure etc. I do understand its not an easy job but there are other wards that manage to be a bit more upbeat. For example, I asked about my buying/putting up a little tree by his bed or in the communal area but was told no - most of the staff don't celebrate Christmas/get in the way etc. I know its only one day and shouldn't matter but it has been a truly awful year and him being stuck in hospital this ward just feels like the final straw. I feel so useless and upset. I know I need to pull myself together and focus on my father and making the best of it. Any suggestions?
Lockheart · 21/12/2019 13:00
Sorry to hear that OP. I'm not fully aware of the intricacies of this but if he is much improved is there any way he could discharge himself and you have him at home for a few days whilst the council get the care package in place, or is that not possible? Is it a case of the council wouldn't do the care package if he discharged himself? (Again, not totally sure of how this works).
Greywalls12 · 21/12/2019 13:04
I'm a nurse.
Could you care for him until the care package was started?
Do they have other teams such as crisis response that have been explored? They offer short term interim care until a formal care package can be started.
Can you pay for private carers?
Could he have day leave on christmas for a few hours with you caring for him?
Unfortunately social care services are extremely stretched at this time of the year
Hearthside · 21/12/2019 13:14
Op i am so sorry i cared for my terminally ill dad and it is hard and heartbreaking. Have the elderly social team not got an emergency team they can send in even if it just to help you with say evening and morning care .I really do feel for you .I am a community carer and had no faith in the agency we had in at all but the chc just didn't have any other care agency available.
Failing that op can you just bring him home for xmas day i am sure the hospital can help you sort this so you can spend Christmas day together .
Mogs43 · 21/12/2019 13:16
Thank you. I have asked about day leave. I had previously booked us in for Christmas lunch at a local restaurant. His consultant said she was fine with it but the therapist (OT/physio) had expressed some concerns about risk - I think (although they haven't spoken to me about it) they are recommending double handed care and there's only me (family and friends all have other plans). I am sure that I can manage on my own - I have taken him to the coffee shop, m&s etc in the hospital on my own. His consultant said she would discuss the options with the therapists on Monday but that she would have to go with their advice. She wasn't very hopeful. I think I could do it and take on the risk -biggest challenge would be getting him in a taxi but am sure its not impossible?
Girlmeetsbook · 21/12/2019 13:20
Is he bed-bound? If so and Christmas is going to be in hospital then make it as cheery as possible. When my FIL was terminal in hospital the ward he was on allowed flowers etc in rooms (sadly because of how ill everyone was, flowers were not a concern). Take some chocolates for him and the nurses, nice sweets and fruit juices for him-whatever he fancies. Also talk to the nurses, scout out a better, lighter room in the case of someone else being discharged, that he can move to. This was literally us last Christmas OP.
Mogs43 · 21/12/2019 13:21
Sorry - to answer the other questions. They have said they are hoping to put in place a six week reablement package but that will take some time to sort out/ there is no-one around over Christmas and he will likely be in hospital until at least January. They haven't spoken to me about the care package in any detail but I think they are proposing double handed care 2 or 3 times a day. I can of course look after him - but apparently it is really hard to get care (especially double handed?)over Christmas?
CoffeeRunner · 21/12/2019 13:26
I work in a hospital in a multi cultural area (Birmingham) and every ward has a Christmas tree, Christmas music etc. Not all staff celebrate Christmas but the majority of our patients do & it is there for them. To, as you say, make the atmosphere a little less shit at Christmas.
I do understand the concerns - if dad really should have 2 people to help him mobilise/transfer etc and you are doing it alone he is at higher risk of having a fall & ending up back in hospital.
I also understand fully why you want to try.
Is there a Flow Co-Ordinator on the ward? They may possibly be able to help you get a quicker discharge.
Pjsandbaileys · 21/12/2019 13:27
If he is well enough they probably would allow him to be discharged for a few hours. I had a long term hospital stay and it was common place for the "long terms" to be allowed out for a couple of hours, with a family member, on a Sunday if they were well enough. X
Myyearmytime · 21/12/2019 13:35
Have you got a wheelchair for him.?
Have you got pads for him?
If you have both .
You can take him in wheelchair taxi to restaurant enjoy meal
And return to hospital.
If you have not got a wheelchair the red cross could lend you one .
Pads you can buy .
There you can take your dad out safely.
Butterfly02 · 21/12/2019 13:38
I was a district nurse for many years we did what ever was needed to get people home for Christmas if they couldn't get enough care in place we would assist (eg go help family wash them) because we knew how important these things were.
I'd find a nice member of staff and explain you want df home for Christmas, get them to arrange transport and equipment ASAP, talk to PALs as they may speed things up if needed, speak to dfs GP can they provide any support? A patient should not sit in hospital for two weeks because it's Christmas and new year that is not morally or clinically the right thing to do.
It more expensive to have patients in hospital than at home, it's also more risky for df to be in hospital as he could pickup alsorts of infections.
As a last resort could he be transferred to a hospice in order to get him off the ward?
Best of luck.
BlackWhitePurple · 21/12/2019 13:43
Might it be possible to hire a nurse privately for the day to take him out? Then there would be 2 of you to help him. The nurse could keep a low profile during dinner (eg you pay for them to have dinner a few tables away, so you and your dad have privacy, but the nurse is there if needed) and could help you get him in and out of taxis etc.
Yarboosucks · 21/12/2019 13:45
As a fall back plan, if all other (very good) ideas fail and as a last resort, could you decorate yourself (they cannot object to that) and take in a fab picnic of all his favourite things? You may look daft, but sometimes being ridiculous is a great tonic.
PilatesPeach · 21/12/2019 14:00
Book a cab and let company know to ask driver to assist you. Let restaurant know that you might like some help when you arrive there and then same in reverse. Am sure people would be a happy to help you. Wheelchair to front of hospital. Good luck OP you sound a lovely lovely person and I totally understand how you feel having lost both my parents. Failing that a lovely picnic as pp mentioned but fingers crossed for a lovely meal out x
OhTheRoses · 21/12/2019 14:02
So he's spending his last Christmas in a grotty, dark, dirty hospital room where the staff are miserable and they have refused to let you decorate the room because most staff don't celebrate Christmas because nobody has got their finger out to organise a care package to get him home for Christmas.
No wonder you are upset. I would be doing the following:
Contact CEO and ask for an explanation in relation to the state of your df's room, attitude of staff and why the consultant and OT teams aren't joined up enough toncommunicate and facilitate.
Contact PALS re same.
Contact Social Services re same
Contact Director of nirsing about attitude of staff and demand to know why the nursez needs re Christmas are more culturally important than your father's.
Don't take this lying down. It's a bloody disgrace.
Look after yourself and make sure, if your father can't get out that you either get him transferred to a different and more professionally run ward or make where he is the equivalent of Santa's grotto with a good tv, and if the staf can't be arsedbto clean it take in your own mop and bucket, take pictures and send them to the CEO copied to your local MP.
Poor you - good luck - make it as special as you can.
Wibblewobble99 · 21/12/2019 14:07
Can you borrow a wheelchair and then Get a taxi that takes the wheelchair whole, so you don’t have the risk of getting him in and out? Go somewhere with accessible disabled loos again to minimise any risk to him or you that would come with having to get him in and out of a wheelchair. My aunt hated hers but it was our compromise - the only way they would let her out for the day and looking back I wouldn’t have been able to cope had she not been in a chair. Good luck and hope you enjoy your day together whatever plans you make xx
Coffeshopgirl · 21/12/2019 14:12
If all your father is waiting for is his home support to be in place, can he not be transferred to a respite placement in the interim? He is prone to hospital acquired infection the longer he is on the ward.
Is there a hospital social work team based at the hospital? The ward staff will know this. If not ask the discharge co ordinator on the ward.
Zilla1 · 21/12/2019 14:12
I'm sorry to hear that, OP. Being the main carer is hard. Ops have made lots of helpful suggestions. I don't have much to add, except to suggest that while you try and make what might be your final Christmas together the nest it can be, please try not to lose sight of all the previous Christmas you spent together in better circumstances. If there's no practicable alternative to your father being in hospital, he will at least be able to spend time with you which I suspect might be the most important thing to him. Good luck in trying to arrange a discharge or temporary trip if practicable.
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