Dad deteriorating in hospital - just want him home

If he’s not walking, how are you going to toilet him ?

I had a similar experience with my lovely mum, the hospital just wanted to sedate her and it was my worst nightmare, she was rapidly declining. She just wanted to come home. In the end I had to force the issue and took no prisoners, she was released at around 9pm after waiting all day for the pharmacy to send the meds up to the ward.
Even now writing this makes me emotional, she was crying her heart out when I walked in and said come on mum were going home.
In the car I said have you eaten anything mum? No they hasn’t even fed her, I stopped on the way home and got a bag of chips and a can of pop.
I can honestly say it was the best most appreciated meal ever!
Don’t get me wrong it’s hard work looking after an elderly parent and nursing them back to health. Get the support that you and your family are comfortable with, it’s a fine balance and always take on board what your dads opinion.
Get your dad home OP, follow your gut instincts, and what’s best for him.

I agree with previous posters, trust your instincts, if something goes wrong you'll never get over it. My father had a similar experience after a fall, turns out he wasn't being hydrated properly, he also developed an infection. He went downhill rapidly, by the time we plucked up the courage to question his treatment and take him somewhere else the damage was done. He died. We got a full apology from the NHS who admitted to multiple failings but didn't change the outcome.

Haven't read the whole thread OP, your first post was enough. My Dad was exactly the same - hospital admission followed by severe hallucinations, delirium, distress. Ward staff were utterly useless. I don't say that lightly I really don't. I spoke to 8 different doctors, numerous nurses. One day he was settled, the next confused, the next day settled and when I asked about the previous days confusion they thought he had been fine. Then talk about a "rehab bed." Luckily I'm a former care home manager and knew enough to know that was the last thing he needed. Then they challenged his capacity - again, we were so lucky, my friend is the capacity lead at the hospital. It felt like some kind of prison break attempt. He was in and out 8 times in four months, each time the same story, each time getting worse. Eventually, we discussed with his Gp who put him on end of life fast track. The community nursing team were brilliant. Social care were hopeless - offering set time visits when I was begging for help during the overnight periods (crawling round his bedroom screaming that the sea was coming through the window, the diggers were burying him alive in his bed). During the day time when they visited to assess he was deemed not to need additional help as he was settled - of course he was he was exhausted! We spent well over £2k on aids, adaptations as the referral to the OTs came six weeks after he came home. It was utter hell, for a good eight weeks. Imagine an emotionally challenged,
permanently frustrated, scared and anxious toddler who is full size. He's been back home for over a year now. He does have some mild dementia, but has gone from completely doubly incontinent to taking the dog out to do her business. He'd have been dead if he had gone to a care home. If you can, get your Dad home. But be under no illusion it's a hard slog with little support.

Sorry to add more I don't think my dads hallucinations were med related. They also didn't want to give him sedation (he was getting up at night and fighting to escape the ward) as it can make things worse.

Hyperactive delirium is not much talked about but common

Oh yes and he was negative for uti although tested a few times.

My dad (87) had a heart attack in September 2020 and had hyperactive delirium. It was horrible not knowing what was going on for him and there were no visitors allowed at the time. Nights were hardest for him, we could only speak on the phone as he doesn't really do tech. He was in pretty good nick beforehand and he had to stay in for a while just for the delirium. Looking it up patients apparently benefit from their usual routine, surroundings and family etc all of which was unavailable to him.

Anyway, mentally he's pretty much back to where he was but is being tested for dementia just in case. But no great hurry it seems. What helped (apart from being back home and with my mum) was talking with him about it afterwards. Just working through the hallucinations.

He's got a few other physical things going on and is a bit frail but can still hold a good conversation etc.

Btw my dad had never been in hospital overnight before and I don't think that helped when he was in there.

I know @watcherintherye that simple stuff like water and even feeding (yes, might there be a reason👀 the stroke patient did not eat the food on the table?? 👀 ) can be neglected.

5 years, 🌻🌻🌻congratulations on holding on 👏🏻👏🏻
Sorry for your loss.
🌻🌻🌻

He is currently "bed blocking" he/you are in the best negotiation position that he/you can be. The hospital want the bed back. You need to understand that once he is in the care home it can be harder to transfer him out if you want to care from him at home. Once he is home the hospital hand his care off to care in the community team. In some areas they are just not able to keep up with the needs.

Ask yourself, can you manage his current condition with a healed arm on a long term basis?

As other people have said you need to get answers to the questions.

Get an appointment with whichever doctor is listed as his doctor on his medical chart.
If he is under an orthopaedic doc ask (the nursing staff) which doctor should he see about the hallucinations.

Start with asking the ward sister to have his water intake charted and if he has been checked for a UTI

You should try making an appointment with "his" nurse or the ward sister.
Ask what tests have been undertaken and why as in what was the concern and what was the result.
What medications he is on and why. Google and If possible check the manafactures product sheets for side effects.
If he is on eg morphine ask what alternative pain meds with no morphine can do the same job.
It would not hurt to ask your local pharmacist about possible drug interactions.

Has he been tested for stroke symptoms or had a brain scan?

Who has been in to see him eg physio? speech? OT

Now for getting him home.
If he is not mobile you will need ground floor accommodation with :

• wheelchair access non-step roll ramp
• a wheelchair he can fit into and which can fit through your doors (always pull him backwards through the doors to prevent his hands from being damaged.)
• a bed with a light next to it.
• bathroom (toilet and shower) with space to monover a wheelchair with 2 helpers.
• a full body lift hoist or a help to stand hoist both need different harness and need to be weight specific.
• living area cleared to allow w/c access and turning points.

You need to be prepared to bumb wipe and wash and help him dress.
He has to be prepared to let you do these things too.

You know him best, and although the staff should listen to your concerns, they don’t know your dad like you do. Each time my DGM went into hospital or a new care home, there was a sudden deterioration in her condition. You should be entitled to 6 weeks of free care from social services on discharge, although this is likely to be visits rather than 24hr care. Your ability to stay with them sounds ideal.

Is it possible he has a UTI and needs antibiotics?
and /or

Is not drinking sufficient amounts is the hospital monitoring his liquid intake and output?

I’m sorry, but in my experience this just won’t be done. The staff, whether in hospitals or care homes, do not have the capacity to provide the verging on 1-1 care that frail, confused elderly people need. That’s why I took my Mum out of hospital and looked after her at home for nearly 5 years, and, God knows, it was hard. But I couldn’t let her fade and fade before my eyes.

Personally I would get him out of there now. We had a similar situation with my dad - I won’t go into detail here, but I’m convinced if we’d fought to get him home we’d have a very different outcome to the one we’re faced with today. Get reablement involved they’ll need to assess him in his home to see what he needs.

I hear your gut talking. I think you should listen to it. Get your dad out, he’s confused where he is. Get him out as soon as you can. If it turns out it’s difficult get help. Keep your parents out of hospital if you can.

You need to speak to his consultant. Don't be afraid to ask to meet with them. In fact ask for a meeting and reveal poa.

Put things in writing and don't be afraid to talk to pals.

Say that you feel home would be a better environment but you're wary of a failed discharge and want to know what care package can be supplied to support the your father. Care for 4 or 6 weeks (can't remember which) is paid for by the hospital on discharge.

In this situation make sure that ot can assess the house before discharge and can provide outpatient appointments for rehab

Has he had a brain scan?
FIL had a fall and said he didn’t hit his head. Struggled to find words and perform normal tasks. Sent home alone.
We were ignored by medical staff until we got him to the hospital I work in.
Brain scan showed a bleed.
Also ask them to check for urinary tract infection and to change pain medication.
Take them Up on rehab, once he can toilet himself, you can take him home.

Respect form: My memory isnt what it was! It was 4years ago... However, I remember it was a way of the hospital recording information about my relative and logging my concerns about their treatment. It involved all medical (ie if DNR, hearing aids false teeth and normal pre admission functioning as well as POA) and personal details of my relative and their preferences for their name (they wouldn't answer to their documented christian name, as used middke name for 90 years, so weren't being rude, but confused. )

At the time I remember it was such a relief to have staff fill it in as it contained everything my family had been trying to tell staff, in order that they were treated with respect. It wad at the front of their notes in hospital and went with them onto different wards.

Also, after first discharge my family shared care of my relative. After a week we recognised we couldn't cope and had to seek help from a care company. The rehabilitation hospital promised never materialised and neither gp or hospital were keen to provide support.

Yes, my relative recovered after their first admission, it was delirium and they were very confused and talking nonsense. Very much sounded like ypur father. Horrible to see.

A few years later they had a second admission and were very frail and I had to again push for effective care and an understanding of their condition.

Eventually, after speaking with senior consultant on ward we managed to get them home for palliative care. Was incredibly hard both times to get accurate information.

I'd be very cautious about taking on care yourself, as in my experience you could very well be left with little support.

In your position I would make it known ASAP you have POA and ask to speak to senior consultant in charge of your father's care plan. Also, ask if the hospital have a Respect form. Ours did but it took one brilliant Doctor actually listening to my concerns about the difference in my relative for it to be mentioned and completed.

Please, push for knowledge before committing yourself to providing personal care before you have a good understanding of what has been established. I'm afraid you may well have to develop a very thick skin and persistent attitude to get the information you need.

With POA you should be able to object to discharge until you know what is going on.

I had this problem with a relative. Really needed to push hard to ask for meeting with senior consultant to discuss difference in my relative. I kept getting mixed messages and being fobbed off by staff on the ward. In the end I contacted PALs and made a fuss. (Shouldn't have had to but basic information was not clear or forthcoming, nor consistent.)

Prior to your father's discharge I would insist on a meeting with staff, presuming you are able to do this. I had POA for my relative so could advocate for them. Was very difficult. Before you make a decision about care, I would ensure you are confident that you are in full facts of your fathers diagnosis, treatment plan and prognosis.
Good luck.