Hand holding really. But any advice welcome.

[Feelingstrange2]

My 83 year old father has a few health issues but the main reason he lives with us is he suffers from mixed dementia, predominantly Vascular with Alzheimers. His main issue was balance, following instruction sequences and speech. He knew exactly what was going on, where he was etc, although couldn't necessarily articulate things very easily.

Then, in August, he had c diff and spent 7 days in hospital. He seemed to be recovering well , when suddenly he went downhill and had a recurrence. Bad the first time, but this was significantly worse. He was admitted again, given a different antibiotic, was doing well and ready for discharge after 8 days. At this point, last Wednesday, he almost seemed as well as he had been before the first c diff occurrence.

About an hour before he was due to leave hospital he was taken unwell again so they cancelled his discharge. This two days later turned out to be positive COVID.

He appears to have tolerated the common symptoms of COVID very well with just one day back in bed. He's now up, eating and drinking well, no aches or pains, no obvious respiratory issues.

But, his dementia (probably the alzheimers) seems a lot worse. He's now talking of his Mum, childhood homes, etc. Things I know were to be expected but the speed ....

In some ways, I just want him home again. But we need to stay well if we can as we are his only family (I have a brother but he is disabled and cannot help), so I know it makes sense he stays in hospital until he is better. Plus he mustn't put anyone else at risk where covid could be deadly.

I think I'm just looking for a handhold and advice or information if anyone has it. I find myself the apitamy of positivity talking to him but then feel like bursting into tears when I've finished and am away from him seeing me like that.

I hear you.
nothing to offer, it’s hard and awful, and we just muddle on best we can!!

People with dementia often do become more confused when in hospital; also look up hospital acquired delirium which can affect people who don't have dementia. For many people they recover over a period of a few weeks once home again.

So it's a bit of a catch 22 - the hospital need to be sure his new confusion is not down to something more sinister (stroke, infection etc) and the discharge team may need to put in more care, more kit etc before he can come home, but if he is going to recover he does need to be out of hospital.

Only you know whether you can cope with him at home as he is.

I say this with great kindness and respect (FIL has dementia) but have you had any discussions about what is best for your father and for your family in the future, given you know his dementia is only going in one direction?

No we haven't had any discussions. Except that:

We know my brother cannot help.

We know we can. Certainly with how he was when he was admitted. We have a lot of adjustments here at home to enable us to care for him.

I'd started to put out feelers for care options here so we were making links but that fell over as we were looking at care homes that were residential and I suspect when he leaves us it might be nursing care he needs? So, it would be better that the links we make are with nursing homes?

Is he still in Hospital now @Feelingstrange2?

It's very hard to get a care home for an elderly relative. It will be so much harder if you agree to him being discharged back to your home.

I'd have a long think overnight about whether you can cope with him at home with his new state of confusion.

You may want him home but you may need them to provide carers? Alternatively if you don't think you can cope with him at home, I'd talk to the Discharge Clerk tomorrow and ask what the plans are for discharge and make it clear that either, you're willing to have him home with carers or you unfortunately can't manage with him at home anymore and they're going to have to find somewhere else

No, he's still there but he is coming home tomorrow.

I might be naive but I think we can manage. I can't leave Dad in hospital longer than he needs to be. He's been a fabulous Dad and he's called me three times today for a chat (because I've asked him to, if he's bored in the hospital side room on his own) and he is talking with improved clarity. However, I will find a care home for him if we have too but I'm convinced he will be more settled and less confused when he's home again.

What I'll do, if he settles, is look into local carers that we pay to come in for respite cover rather than a home. I'm sure we will have to do something but quite what I'm not sure of yet.

So Dads home. He came in by ambulance wheelchair.

Had a cup of tea, then a shower, new clothes, lunch. He seems back to as he was. Thank goodness. At least for now.

He's come home with a TEP. I've read it and it appears to have been completed between him and the doctors. Obviously it's important- what do I do with it? Simply keep it safe? Anyone know?

Sorry I'm not sure what a TEP is

It's a form with recommended treatment options on, including a do not resuscitate recommendation. Completed by a doctor.

I've googled it and it appears it should sort of "travel with him" I.e. stay at home but be given to ambulance paramedics, doctors etc if he's ever admitted again. Or a care home etc should he leave us. It's formal name is a Treatment Escalation Plan

Ambulance person here. Keep his TEP with him, make sure he knows what it is and where it is, and add in his discharge letter and his most recent prescription. Put it all in a nice bright folder please somewhere obvious. It makes a massive difference to ambulance crews to have all this to hand. Also make sure contact information for anyone he'd like contacted in an emergency, or who has LPA for health/welfare is in there.

Does he have carers coming in for a few weeks?

Thank you so much. I will do that.

We do have a H and W POA as well not that its needed unless hes unable to decide himself. Should I put a copy of that in the bright folder?

No we don't have carers but my husband is not working for 3 weeks so he has the two of us round the clock!

I have a local care company booked to talk to on Monday and I'm now a registered carer with the local carers council thingy. They are arranging for the emergency carer card to be produced and have sent me a lot of helpful information. My husband has been registered as a carer with his work as they allow call back home and an extra 2 weeks off a year for "carer duties" if we need to call on it.

Thanks for all this help it's so comforting

Ahh yes you say LPA that's the same as the H and W POA isn't it?

Yup that's the one. You sound very well sorted.

Thanks.

I've made the folder up. I only had a yellow one! Think that's bright enough.

Been through it with Dad and its in his room. That was really useful advice because when Dad went in he had an ambulance and they asked so much and as I was making up the folder I was thinking "oh yeah, they asked that", "oh yeah". I can see it makes really good sense.