Dad deteriorating in hospital - just want him home

[Bedbouncer]

Dad is 86 and had a fall which broke his arm a week ago. He was putting the lawnmower away after mowing the lawn, which illustrates how well he was. He was also still driving and mentally very sharp. Since being in hospital he has deteriorated shockingly- he struggles to string a sentence together and is hallucinating, which I assume is the effect of the painkillers, but the staff - who appear pleasant enough- assume that's just how he is, and don't take him seriously. He also hasn't managed to walk since being admitted and is complaining that some of the staff are rough with him. He lives about half a mile from me with my 82 year old mum, who is also still very sharp, but wouldn't be able to manage him by herself physically as he is. The hospital suggested discharging him to 'a rehabilitation unit for intensive physio', but the potential places they have in mind look more like care homes to me. I would be happy to move in with my parents for a few weeks to help while he gets back on his feet. I think he just needs to get off the strong pain meds - there's nothing wrong with his legs! I work from home, very flexibly and can work anywhere. But am worried I might be biting off more than I can chew. Due to speak to his occupational therapist at the hospital tomorrow. Do I say we want him home, or go for the rehab/care home??

Go rehab. If you can’t cope when he’s home you’re stuffed.

But what if he just keeps deteriorating? It's horrible seeing him like that ☹️

I personally would get him home asap if it is at all possible. I think there’s an entitlement to a care package for 6 weeks on discharge, if I’ve remembered correctly. Is he drinking enough? It’s a common problem with elderly people in hospital and care homes. The staff simply don’t have time to make sure that drinks are within reach and being drunk. This can lead to UTIs (a symptom if which is confusion) and start a downward spiral.

Can he wash and toilet himself? If not you need to think about whether you are happy to help with that or not. If not he would have to wait in hospital for a care package and so it would probably be better to wait for a rehab bed. Since a lot of the cottage hospitals and rehab units have been closed down care homes can provide short term rehab placements with physios etc visiting each day which might be what happens in your area too.

Hospital acquired/induced delirium is very common, and unfortunately for some reason some people recover completely and others just don't.

Rehab units generally are in care homes. They are great for people who need a stepping stone between hospital and home, they are less good for people who are already a bit confused.

Ask the discharge team if he is on a discharge to assess pathway. If he is then ask if this can be for rehab at home rather than a rehab unit if you are sure that you can support him at home (essentially someone must be able to support him during the night).

Make sure that if he does go home that there is guaranteed review/follow up from the local authority within a couple of weeks of him being home in case things don't go well.

You want him to remain where he is.

You need to sort out the hallucinations first if its the drugs he need to be offered alternative ones.

If his speech is pattern has changed have the hospital investigated if he had a stroke etc?

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?

Why has he "not managed to walk" ?

How is he getting to the toilet or being showered?

Can he do it all himself Are staff having to supervise or even take over?

At his age the risk of developing DVT ( blood clots) is mitigated by physical activity has he been put on any blood thinner (injection / tablet) ?

Only once you are sure that he is back to being near himself should you look at moving him from the hospital.

Thanks-- lots of different opinions there! My feeling is we need to get him home. Someone will have to look after him, wouldn't it be best if that was me?

@SolasAnla I disagree that he should stay there. All your questions are pertinent and have been asked, but we don't get satisfactory answers or even ever see the same member of staff more than once. Hospital is definitely not 'the best place' on this occasion.

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.

@Aprilsun1 Thank you. I have Poa for him, but haven't made that known yet. What was the outcome for your relative? Did they recover?

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.

@Aprilsun1 Thank you, that's very helpful. What is a Respect form?

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.

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.

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.

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

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.

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.

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.

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.

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.

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.
🌻🌻🌻

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.

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

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