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 🙏

As others said, you need to be absolutely firm that you cannot cope with him. It would be 24/7, 365 days a year, with no time off, no holidays, no days off sick. Possibly for years.

You mentioned DNR. This is very specific, do-not resuscitate if the heart has stopped, something that can leave the person with broken ribs and on a ventilator. It doesn’t mean that they stop treating the person. My Dad has been DNR for 5 years, they still treat him with antibiotics if he gets a chest infection (according to his wishes, he wants to live as long as possible) and would take him to hospital if he hadn’t made it clear that he didn’t want to ho.

Have they checked for UTI ? That can cause the delirium etc

When dad had a fall earlier in the year with fractured vertebrae, I had to say we couldn't look after him (him and I had agreed that) and that they couldn't discharge him to home as he couldn't manage.

The discharge team put pressure on him and us, but we basically refused. It's a crappy situation to be in, and makes you feel guilty, but it means they have to put a care plan in place. If you waver, they will jump on it and discharge asap and you will be stuck trying to manage

It sounds like a permanent care option is whats needed. The important question will be money…would he be self funding or state paying for a nursing home? If self funding, its pretty simple to choose somewhere, if state, then you need to be firm that he can’t come home, its too much for your mum and you to cope with and see what they suggest.
The weight loss isnt a good sign, and unfortunately dementia can become apparent suddenly like this. If no other illness present, it’s quite possible he and your mum have been masking/minimising his cognitive abilities for some time. Some elderly do loose their marbles in hospital though - I can’t remember quite the phrase but something like “Hospital acquired delirium” which improves once back home. It’s tricky when theyre in hospital as staff dont know them and easy to assume that its their ‘normal’.
I would advise agreeing to a DNR - its a brutal process with minimal success, and in the unlikely event he survived it, most likely with cracked ribs, it'll almost certainly leave him in a much worse state than he is now.
Good luck OP, its a horrible time.

I believe he would be self funding, at least for a few months. I don't have poa though so can't be 100%. It is based on my Mums understanding that they both have the same, some in a joint account and most in 4 other savings accounts (2 each).

I think the limit was 23k when i was dealing with my troublesome elderlies! But it may have changed, and not sure how it works if both spouses are still alive. I think I'm right in saying the marital home doesn’t get included if one of them is still living in it, so may be something to take into consideration if your mum is hoping to relocate. Either way you can soon plough through £££ at £1500 or so a week, so a home that is happy to switch from self funding might be a good idea.

I’d get POA in place for your mum at least, possibly too late for your dad to have capacity now, but it makes everything so much easier if you have it.
Hope he brightens up though - he may surprise you yet!

Follow @NoBinturongsHereMate's advice.

Oh, and when asking questions always check, double check and triple check they are actually talking about the right patient. With both my dad and stepdad we had several conversations with ward staff that nade absolutely no sense until we realised they had the wrong file (both had unusual names, they weren't simply muddling John Smith 1 and John Smith 2).

"It's to be expected, given his dementia."
"He doesn't have dementia,.he has sepsis."

"His leg is much better today."
"What do you mean 'better'? There was absolutely nothing wrong with it yesterday. He's in for a kidney problem."

And they'd swear up and down they were talking about the right person. Trust nothing.

In one particularly alarming phone call they mentioned 'his remaining leg', having confirmed his name twice. The previous afternoon he'd had 2 perfectly good legs, and hadn't been scheduled for any surgery (I went in and checked - still 2 legs, both attached).

Just a quick update, I've been in to see him today and have had quite a long chat with the OT and nurse practitioner. He is constipated again, he's had 3 enema's in 9 days. They agree he's very confused and not improving as they'd hoped. They've tried to do a memory test (MOCA?) a few times, today was the most he'd managed but he only got 6 out of 30.

I took the advice given here and mentioned his 2 failed discharges in a month and that I thought it would be another failed discharge.

They've referred him to their psych team but until they can figure out what is making him so unwell and frail I don't actually think discharge is an option. He looks so very thin, nothing like my Dad of just a few weeks ago 😔

My Dad is still in hospital, he's not improving as they'd hoped sadly.

The psychiatric team have now seen him and have diagnosed depression, they discussed antidepressants with him but determined him not to have capacity to make that decision so are administering them covertly in his best interests.

I'm still not sure what will happen next, it sounds likely he'll be in hospital over Christmas. Each visit is very difficult as he is convinced it is the last time he will see us and he spends most of the visit in tears, or with his head in his hands. He's still very confused and believes things that aren't true, there is no persuading him otherwise sadly.

Sorry to hear this OP. Have they referred him to dietician if he isn't eating much / losing weight? A score of 6/30 on the MOCA is very low implying severe cognitive impairment, however if he has an active infection in any way this wouldn't really be valid. It sounds like they still haven't decided he's 'medically fit for discharge' so he's unlikely to be going anywhere soon? It also sounds like he doesn't have capacity for care needs / discharge planning? Has this been formally assessed yet (although again they should be insuring no active infections etc which may influence capacity. What has the OT said? Are they working on orientation? Does he have a working clock by his bedside - the day / night ones can be good. Can you try and make a photo book showing family members, past holidays / special events etc? Add words if you can so nursing staff can also chat with him when you aren't there. Is he wearing day clothes in the day / night clothes at night? How is he sleeping?

I feel for you OP.
Is there anyone close enough to turn up - notebook and pen very ostentatiously in hand - track down his doctors, look them in the eye, and say, "now talk me through what you have ruled out so far, what other potential causes you're exploring, and generally how you plan to at least TRY to restore this man to the sane person he was earlier this year!"

It may, of course, be that everything is falling to bits at once. This happened to a friend's father - fine until he hit 89, then at the end of that year his mental and physical health just plummeted over the course of a couple of months, and that was it, really.

But for your own peace of mind as well as his welfare, you want to do what you can.

Your poor Dad.

Sorry for not replying for a bit, everything got a bit overwhelming for a while!

DF is still in hospital, but due to be discharged any day now. They have done more tests but not found any physical issue. The psychiatric team have visited a few times now and feel he is severely depressed which is now the main issue being treated.

He was started on an antidepressant which seemed to help but it had some unwanted side effects so they have just started another this week. The current plan is to move him to an interim placement in a care/nursing home to see if the new medication helps. They did ask if he could come back to my house, but I just don't see that we could look after him until we have a more stable baseline so I said no for now. I feel utterly awful but have to consider my family.

The social worker here said he triggers interim funding under CHC but his home local authority have to agree yet.

DM is still staying with us, it's manageable but tricky, but until we know what is happening longer term with DF it is really hard to plan, practically and financially.

I'm still hoping we can get DF back to something like he was, but the medical team have warned that it may not happen 😢

Thank you for the updates. It is truly horrible when you get to this stage. You have the relative claiming they want to go home or ss asking whether you can take them etc etc.

100% agree with the PP who says check and double check. When my late DM went into hospital they couldnt find her on their system and she has an unusual name! They then asked me whether I was sure she was registered with the GP. I had already given the the GP details and told them that she had been getting repeat prescriptions for the last year from them. Finally they asked me for her NI number and I got annoyed and told them to check with GP and to get some systems that actually work and talk to each other.

I have significant background in some of the government IT systems and the health trusts are a complete disgrace with procuring the systems. They want cheap and cheerful and want the very very cheapest. They then hang onto these systems way after they should. They dont work they way They like what they like and dont want to bother their staff with learning a new system. One HA even asked whether they could keep their old one without maintenance and just take the risk!

@MichaelandKirk interesting you say that- my son used to work in IT for a consultancy that did onsite 'level 2 and 3 support' for surgeries and he was the go to person to send on site as he's very personable- he did say to me how archaic a lot of the systems were and that they wouldn't implement simple things that didn't cost much, if anything-

They just don’t want change…