Dad deteriorating in hospital - just want him home

I’m sorry you’re going through this. We had a very similar situation with my 89 year old dad last year, and my sister and I fought hard to get him home with the support he needed there. Within a matter of days we got him a hospital bed, commode and carers 4 times a day for 6 weeks. He went from being almost entirely immobile, having hallucinations and pulling out his tubes in hospital to walking (slowly) to the post box. You know him better than the hospital staff do-it’s very hard for them to take a holistic view with frequent staff changes, so get him home if that’s what feels right. Good luck xx

I had a similar issue . My Aunt , 97 ! lives with me and fell , hurting her hip and dislocated her shoulder. After hospital , where she was bedridden , it was suggested that she needed rehab. In meetings , we agreed that the very minimum she needed to be able to do was to be able to walk with her frame again and have use of her hands to eat , etc. Unlike hospital , rehab should have regular physio to get patients ready for discharge to home. Also this allowed a new Care package to be put in place with extra visits.

I believe to go straight home from hospital would be very difficult for your family to manage. It is harder than you can imagine .
It is unfortunate but he is lucky that you are available to advocate for him. Do try and get the full names of anyone you talk to about it ie Dr , nurse , care coordinator. It does help.

I’m a doctor who looks after elderly patients. I would ask for a meeting with Ward sister , doctor from the team and therapists. Talk to them about POA ans his current needs.
I would caution you against just getting him home if he can’t walk.

You will not be give bed rails in a home environment if there is confusion or dementia. As leaving them up creates a massive fall risk as the person will try to climb up and over the rail.

Sorry if my post above sounds extremely negative but I was on the receiving end of the "just get the patient (my Dad) home" policy when the NHS itself did just discharge him with virtually nothing in place. It was counted as a failed discharge and it was utterly traumatic for us and for him.

Now, when I hear this type of story I am wary. Some people have been trying to explain some of the difficulties to you. The difficulties are unfortunately VERY real. It isn't just shoving a bedpan under them and/or bum wiping. Moving them at all is a challenge even with the right equipment (for which training is required).

I was coming on to say some of this.

As someone who ended up trying to take care of an ill and newly immobile 87 year old Dad last year, I would urge caution too. I fully understand the instinct to just "get them home" but it really isn't always that simple. You have to be certain that it is manageable, and the NHS will wash it's hands of you if you take on the care.

My Dad was supposed to be discharged to rehab because while on the ward (pneumonia, but not Covid related) his legs had weakened so much that he lost his ability to stand or walk. He needed intensive physiotherapy in order to have any chance of even standing ever again but he didn't get it. They didn't discharge him to rehab and just hoodwinked my mother into thinking that all was much better than it was and sent him home. That made our lives impossible, even with privately funded carers coming in four times a day, and in a bungalow too (so no stairs).

I was totally unable to manoeuvre my Dad around, and even when the carers were present it was almost impossible. Dangerous even. My Dad wasn't even a big man.

I am urging caution, though I do know from experience exactly how hard this is on everyone. At least get answers to your current questions and an assessment of his likely ongoing needs before bringing him out.

You will need to know that you will be able to cope, and believe me when I say from experience that it was fiendishly difficult. Never underestimate the problems and challenges involved in caring for an immobile adult. They are very difficult to support so even getting to the toilet at all can become a problem. It really isn't just a matter of bum wiping, that is just a small part of it. I ended up cleaning up shit from the floors and furniture. We ended up in crisis and the carers had to involve the Adult Social Services Crisis Team.

I'm sorry you are in this position. I do know it is awful, and I hope you find a suitable way forward.

If you can get him referred to the district nurses, they should be able to direct you to the right place to organise things like the loan of hospital beds, commodes etc

I'd get him home.

It's a care home under guise of 'rehab', OP and it's how a lot of older people enter and end up remaining in the care system.

I'd want him home to see how he is in his home environment and you could even get temporary carers in to help if needed.
Physio will also visit him at home.

I know it's not as simple as this OP but I'd not be putting him in a glorified care setting just yet without giving it my best shot.

Get him home with a discharge package they will give you up to 4 visits a day and OT will arrange any rails or equipment he needs .

My dad had a few spells in frailty ward fully staffed and half full and it was border line neglect . He came home filthy with wrong meds and they'd lost his glasses .

Very sorry that you only have an hour a day
My neighbour is with her DH all day at the mo as he had brain surgery

They told me I wasn't allowed in when mum was in recently, I just went. Have you told them you want to be there longer?

I guess it's hospital dependent
The delirium thing is such a big issue. I would think he needs to recover from that before you try him walking. He might need a rollator thing, have they supplied that?

have you checked has water that's within reach and have you seen him drink independently?

PS If you have not already visited today spend the first 55 mins organising with the nursing staff to get him up and walking down the hospital corridor.

They have a mimimum of 2 people, training, hoists and a electric hospital beds which can be raised up to a safe work hight, usually with bed guards which the paitent can use to assist. They also have specialist mattresses to prevent bed sores. Hospital rooms and hospital furniture are designed as a work environment, homes are not.

Lie down in the floor and try to roll on your side without using any of your legs. Then roll on your 'good' arm without using the 'bad' one.
You will have an ordinary low bed, no training, and he can't roll safely with the broken arm and he will have to be able to roll and hold to allow wipe time. OT's will be risking their job by giving you a quick training guide and you risk harming yourself and your dad.

Stop focusing on getting him home because if you take him home you run the very real risk of him never getting out of bed again.

How are you going to get him home if you cant even get him into a car?

You need the hospital physio to establish his base line physical capabilities.

The OT will "only" sort out some of the equipment after it has been recommended as needed by the physio. So they should be working as a team.

Can i suggest that you phone his GP explain that he is in hospital and that he has failed and see if they will issue a letter detailing his level of fitness and past medical history and current meds as MereDintofPandiculation points out it gives a baseline pre-hospital capacity with the added advantage this is a professional doctors opinion. Unfortunatly sometimes that is important.

I know my posts appear very negative but safely managing a full grown adult who is bed bound is a massive task. (You are at the start line of a marathon not at the finish line of a sprint.)

You are a serious risk of harm as is you mother.

He did not just stop walking. If you agree to a discharge they will not schedule extra tests. Keep saying "I do not understand why he is not up and walking" and ask what has been done to resolve that.

This happened to my Nan and she’s never recovered and now permanently in a home costing £6k a month which is privately funded. The rehab bed was in a nursing home and imo it’s a way to get people through the door, couple of weeks on NHS funding then ‘oh they are unfit to go home’ and then easy option is to stay where they are.

so, I would get him home; but you’ll need help. Can you get a local care company to come round each day? What about a live in carer or two for at least a few months.

My nan has dementia and was pretty lucid until 6 weeks in hospital with no visitors. She recovered physically from the fall but mentally and strength wise she was ruined by that time in hospital with no proper rehab support or social interactions. Breaks my heart xx

OK OP, you need to advocate for your father. Hospital is rarely the best place for anyone and you need to get him home with a care package in place (not just you).

Start writing everything down. Email consultants requesting details of tests undertaken, care plan etc, and make it clear that your dad was not confused previously. Then is no response email NHS trust Chair with your concerns and how you have not been given satisfactory answers.

Contact social services and ask for help. If none forthcoming email your local councillor explaining the situation - they will push social services to get something sorted for you.

NHS trusts rarely want people taking up beds when they are medically fit to go home but this means there is a responsibility to put appropriate care in place. If you can afford to pay for some care tell social services this, you may have other options available to you.

If it was me I would get him home. My sons wife had hospital delirium and once home after a few weeks was much better. You can always get carers in if you can’t cope on your own

Sorry to hear this, has he had blood tests for any infections at all? (I'm juggling an active baby on my lap so sorry if you mentioned this and I missed it)

This sounds very similar to my grandad, he fell broke his leg and very quickly became delirious in hospital, after speaking at length to a few consultants it seems this is a really really common pattern after an elderly person breaks a bone. It was described to me as having a the body really struggles to cope with that shock so it will have a knock on effect on other parts of the body as they have to compensate more than a younger persons would do.

On a practical level I would really try hard to explain how different his behaviour is now, it's easy for medical professionals to overlook this as obviously people's ability in older age varies so much.

I would also really push to get him out of hospital but into a better facility soon, is there an option for a community type hospital? I was with my grandad pretty much 12 hours a day which he was in hospital, he was in ICU as had to have his leg operated on in the end. As much interaction as you can manage and making notes for the patient is also a good way to help them try to comprehend what's happened.

Good luck

Good luck

Attitude to my father changed when I put down in writing his activities in the days leading up to admission, including date, time, distance walked etc.

Tell them you have his POA.

Most hospitals have a board somewhere with the lead ward consultant named: put in writing to that person that you have your dad's POA and are looking for a speedy discharge as he is deteriorating under their care. If you don't think he currently has capacity to make decisions for himself then tell them and make sure they know you are the decision maker. Copy anyone you can think of (PALS certainly). Say the same thing to everyone on the ward.

Can he afford private carers for a while? And can he afford private physio? We have a great private rehab place round here, targeted at people post private hip replacement, but it has amazing facilities. Unlikely to be an option but private carers at home while you live in might make things manageable.

When you have the bandwidth tell your local Healthwatch what's happened.

Someone mentioned ReSPECT above - here's a link www.resus.org.uk/respect/respect-patients-and-carers - but not every area/hospital uses these.

My grandmother went into hospital following falls a couple of times. On both occasions she became very confused - the first time she had a bleed on the brain which explained some of the problems but not the second time. I think outside of her routine she really struggled to cope. She was always well cared for and they kept an eye on her eating/ fluids. It was hard to convince them she normally lived without support and was normally very with it. On both occasions she was discharged to a rehab hospital and recovered fully. If there is a rehab hospital and not a home available it might be worth looking into.

The alternative would be a Intermediate Community Care or Reablement team. The contract might be with the council or nhs. They provide carers and services like physio home visits but to a lesser availability than in rehab. Ask to speak to the hospital discharge team which should include SW and OT.

Why haven’t you said you have POA?

how much time do you spend at the hospital? If you are sure you can manage him at home, get him home. So many things make you worse in hospital. Do you know if he gets enough water?

the painkiller thing is weird. On the one hand sometimes you can’t get them. But when I broke vertebrae I was told I ought to take more, even though the amount I had was managing my pain.

you need to spend a whole day there but I reckon home is better for him. Hospital delirium is definitely a thing.

Rehab place was really good for my FIL who was awful in hospital after break .. the change of environment, social company....they were all weller around him ..but mainly the onsite physio/ ot ....everything was geared to getting him moving again... thet got him to do much more than he thought he could and had done at the hospital

I would be worried about not enough physio at home...even after discharge from rehab place he still needed more and was nowhere near as good at doing his exercises...so we paid for more physics...

On our experience if you can get rehab take it ...as a stepping stone to home...

Infections can affect the elderly mentally as well as physically as can certain drugs in particular reaction to anaesthesia. Remember the staff only see your df as he currently presents, not appreciating that he was fit and active previously. Don't write off a rehab unit though. Dh spent a month in one post a hospital stay and it had a care home feel to it, he was the youngest by far but it did a good job of recovering motor and self care skills. The OT visited our hime and recommended adaptations and equipment before he was discharged.