Trying to work out what might happen next

[Snowdrop2016]

I've posted here a few times recently and everyone has been so helpful

My Dad was fully functional until about 5 weeks ago when he suddenly forgot how to get into the bathroom and became very confused and agitated. Since then he's been in hospital 3 times by emergency ambulance, twice in his home town and this time in my home town because we brought them to stay with us for some respite (he was refusing any care options and Mum couldn't cope, their home is also unsafe after a leak)

He's been in hospital for a week now but we're not really any further forward, they are being great and I do think they are trying everything they can. they've said he has delirium from constipation but think there is more to it than that. He's barely eating or drinking and is losing weight (1-2Kg a week, he's barely 7 stone and is very underweight and frail)

Mum saw him yesterday and said there were short glimmers of Dad but he was very agitated about a baby going missing and them blaming him. He got upset so mum gave him a tissue and he looked at it and said I don't know how to use that 😢 it is like he has lost his cognitive ability but it is so sudden. They have tried to do a memory test a few times but he just can't do it.

They want to know if he can come back to my home on discharge, I'm just not sure we can deal with his care needs, or if he will even accept help (there was talk of dols but not certain if it's gone ahead). We struggled before this latest hospital spell and I think he's worse now. They've asked us to consider a DNR due to how frail he is.

I don't know when discharge might happen, they actually asked mum for my home address yesterday, she didn't have her address book so couldn't remember it (we've not long moved) would they just discharge him here with out my agreement? I don't want him to think he isn't wanted but have to be realistic, we have a primary age child and I have to think of their wellbeing.

Any experience or thoughts would be welcome 🙏

Just to add, we've tried to talk to Dad about what he wants to do but he hasn't yet been able to tell us. He just says he can't explain or make anyone understand 😞

I'm sorry your dad is so poorly. They shouldn't send him home without some sort of care plan in place. Can you meet with the hospital team and refuse to have him home until a care plan is in place?? It might sound harsh but we had to do this when my mum was poorly. The confusion could be caused by a urine infection, have they tested for one?? Good luck with it, it's not an easy time x

Also if they send him home without a care plan in place its an unsafe discharge and they can get in trouble for it

Unless you’re able to provide 24 hour care then I think it’s in your DF best interests to say no.

I think if he went from totally week and coping independently to being as confused as you are describing, you need to really understand the medical situation. Do the doctors know that this behaviour is totally out of character? How long has he been losing weight for? Has he had CT/MRI scans? Is constipation normal for him? Ask the ward to keep care diaries to show you what his 24 hour care needs actually are and whether he is accepting help and whether he has night time needs.
Be honest with them about how much you can offer in terms of support and ask what the liner term plan for support would be if he was discharged to your house short term.
Ask to speak to ward Occupational therapist and explain your concerns.

That should read well, not week!

They have and all is ok, he's barely passing urine so there has been talk of a catheter. Dad said no, his reason was that he'll end up with no arms and legs if that happens. I'm so worried, something seems to have gone badly wrong in his brain 😢

There is no way I or mum could, my partner and I work full time in quite full on jobs. I ended up off sick just before he went into hospital this time as I wasn't coping

I assume that he has had a brain scan for a stroke (sounds likely) or tumour

We've explained over and over how this is not normal for Dad, he was sorting his telephone banking independently in late Oct. I doubt he could make any sort of phone call now.

He's had CTs and an MRI when he was still at home, the hospital here are trying to get copies to re check them.

That's a good suggestion about a care diary, I'll ask.

He's had a head CT and a body CT, then an MRI. All were ok, I also thought stroke initially

I think it's a good idea that they are rechecking scans. An elderly friend of the family recently went into hospital with 'obvious' stroke symptoms. Hospital said that she hadn't had a stroke. Nine days later she had a stroke and the hospital confirmed it after re looking at her first scan and confirming this was a second stroke. Her family are furious at the hospital for missing it. Anyway, she's doing really well now so it didn't end awfully, thank goodness.

I hope you get some answers soon.

Also, how can they discharge him if he's barely passing urine surely that has to be fully investigated. No way would I agree for him to be discharged until I had some answers. Good luck.

Sorry to hear this OP. Actually a family member of ours had a similar sudden deterioration - he was 90 but had been very good mentally and physically, caring for his wife who had dementia and poor eyesight, but then suddenly became completely detached from reality and incapable of making any sense at all. In hospital they never found a clear explanation for what had happened and he went into a care home and sadly died a few months later.
Does it seem as if you could care for him if discharged to your house? I would be worried about this and avoid it at all costs personally. Insist on getting proper information from the hospital about what the alternatives are. Sounds as if he needs full time care at the moment.

I'm hoping they can get them, if not I wonder if they would redo, but that's a pain (and a cost I know) as the hospital he's in won't have that facility.

I was assuming this was the case. To be honest I don’t think anyone could cope
with that. I think you need to have an honest conversation with your Mum, you need to focus on who best can meet your Dad’s needs. You will need very strong boundaries when you have these conversations. For your Mum you can always phrase it as just will they stabilse Df and find out what is happening. But an older frail person barely eating it normal for the last 6 months of life. I’m not saying it is his last 6 months as things could change but I wish someone had said this to me when we hit that stage with my Mum.

I have wondered if this is his body shutting down in some way, he is in his 80s.

As he is I don't think we could care for him, when he was staying with us he refused any help, getting quite aggressive if we tried. It got to the point of him not washing and sleeping in his clothes, but refusing our assistance or my offer to get someone in to support him. None of this is usual for Dad, he is normally quite calm and amenable 😞

Refuse a discharge home. From your description, it's out of the question - care package or not. A home discharge care package would only be carers visiting a few times a day, not full time supervision.

Keep pushing for a diagnosis, and keep asking questions- especially ones they can't currently answer.

Why is he not passing urine? If it's lack of fluid intake, what are they doing about that, should he be on a drip? If fluid intake is fine why isn’t it coming out- blockage, lack of kidney function?

If they can't get copies of the original scams, (or if his symptoms have increased since then) why are they not repeating tham?

Whatvare the possibility cause they are looking at, and what have they ruled out or not considered?

When they talk about discharge repeat that home is no possible. Use the words 'unsafe discharge' and 'it would definitely lead to a failed discharge' (when someone is discharged then almost immediately readmitted - this is an important statistic for them, so they will try to avoid it when you remind them.

Ask about an intermediate care facility or dicharge to assess - this would be a care home.or rehab centre (NHS funded) for a month or so with continuing assessment and physio etc, to see if they can get a stable baseline before working out the long term plan.

@NoBinturongsHereMate advice is solid

you have to be quite firm and advocate for your dad

I am an experienced carer as I had an elderly uncle live with me for quite some time. Absolutely no way would I consent to this . Your father needs are too much for a home environment. How could you manage to look after him 24/7 ? Sounds like hospital is the best place for him right now as I doubt even a nursing home could manage his care atm.

Well if he's hardly peeing have they ruled out a UTI, they can send the elderly a bit mad?

Hold your guns and don't let them discharge him home to you, he needs a proper diagnosis.
My mother slipped rapidly into full blown (vascular) dementia, it was frighteningly quick.

Have you got his discharge notes from previous hospital stays, they can be quite informative even if you do have to keep looking up what things mean. My mums CT scans kept on referring to infarcts which are classic in vascular dementia if we'd only read and made the effort to understand her previous discharge notes

Thank you, very useful advice. He's had 2 failed discharges already, albeit in a different trust so I'll definitely mention that.

They can't just send him home / to yours. Firstly it doesn't sound like he is 'medically fit for discharge' - you need to confirm this.
If they say he is, ask for a formal capacity assessment for discharge planning. Make sure this is done on the correct paper work (formally) and not just written in the main medical notes.

Then you (well your mum really), needs to consider what is in his best interests regarding discharge location.
I would also be questioning if he has capacity to refuse medical treatment eg - catheter at present.
Is he 'out of area' atm? So not in his nearest main hospital? This may be leading to increased pressure to discharge him. Have they put a request in for him to be transferred to his nearest hospital?

There was nothing in them, just constipation on admission and discharge and possible memory issues. They were referring him to a memory clinic but that's it. The hospital here were surprised they didn't prescribe laxatives, I believe they have now persuaded him to try some so it could be he refused.

Yes he is out of area so I do think that is causing some issues. They have asked if he wants to go back to his home, he can't tell us just now but I have explained it's not safe and would need a reasonable amount of work. It's a 3 hr drive away so not something I can sort out in the current situation.

Mum doesn't want to go back, she would like to find somewhere near us, Dad was in agreement that he'd come here for a bit and we'd discuss what they both wanted to do next. The main thing for me was they were safe and warm (they were neither at their home) while we got a longer plan in place. Dad then deteriorated further and we've never managed to get a plan agreed.

It's an impossible situation really 😞