DF resistant to moving to care home

[Debbiedoing]

My DF is currently in hospital, after suffering very distressing hallucinations and significant confusion, memory loss etc. We assume dementia but he's obviously being fully checked out. He's been deteriorating for awhile, and then things got significantly worse very quickly. I've come to stay with him, to help sort things out, get him admitted to hospital and so on. It's very clear to me and others that he cannot look after himself anymore, and needs to be in a care home. He has been widowed for 20 years and lives alone. We'd had a few chats about this, and he seemed to accept that, albeit reluctantly. Yesterday however when I visited him in hospital, he got quite annoyed with me when I talked about it, and started saying he thought he would be okay at home if someone came in to cook his dinner etc. I haven't yet had a full report from the consultants re what their view is, I hope to get that today. I hate the thought of dad being moved into a home against his wishes, i'd really hoped he would accept it, so I didn't feel I was strong arming him. He is often quite lucid, and at other times very unclear about everything.
Does anyone have any advice on handling those conversations, and this situation?

Maybe first speak with the Ward Sister (if that’s what they’re called) about the criteria for a ‘safe discharge’. It may be that steps have to be put in place before your father can be discharged. My mother usually lied her way through these assessments and got discharged but sometimes they wouldn’t discharge her without a compulsory care package - once was a half way ‘cottage hospital’ and another time with compulsory home visits

That's so sad. Your poor dad. Could you present it as a respite place, a kind of rehabilitation? Maybe if he was told that the hospital couldn't do any more for him but he wasn't quite ready to go home so had to go to a halfway house type of place, would he believe that? Once he was there for a couple of weeks I'm sure he would settle down and become used to it.

My mother had a hip operation and had terrible delusions. They were completely real to her. Do the doctors have any idea what caused your dad's delusions?

What’s hugely positive from your post - if I can draw positives - is that he’s prepared to have people come into the home to help with meals etc. Seize that openness with both hands - it’s a good starting step

Does anyone have any advice on handling those conversations, and this situation?

Sometimes it’s better for that conversation to come from someone else - eg family friend, GP, someone less closely related. Removes the “so you’re trying to put me in a nursing home” dynamic

Also look at the fact sheets from the Alzheimer’s Organisstion

www.alzheimers.org.uk/get-support/help-dementia-care/care-homes-who-decides-when

Talk to the doctors about whether he has had a capacity assessment specifically about ability to self care and his place of care.
SW usually do this.
Has he had all the discharge assessments?
OT,physio, SW?
Usually its an MDT decision regarding care needs and place of care involving him and his NOK.
Discharge planning team can discuss with you .

And how do you know when it’s time for residential care and what other options are available

www.alzheimers.org.uk/get-support/help-dementia-care/care-homes-decision#content-start

Get SS involved, they helped us get a relative into a home against their will, but in their best interests.

Thanks all. This is really helpful. Great to have some more experienced input, I'm feeling pretty overwhelmed.

Some really helpful ideas. Especially about having others take on some of the conversations - maybe someone at the hospital. I need to press hospital staff today for more information. I was supposed to do this yesterday but when I turned up for the meeting there was massive ward reorganisation going on due to Covid, so my dad was essentially 'between wards' when I was there. But I can do this first thing this morning.
The cause of the hallucinations is not completely clear yet. The hospital is trying to establish if there is any medical underlying cause.

Has he been checked for a UTI? In older people with dementia UTIs can cause confusion.

@WeAreTheHeroes thanks, yes, there are no infections

@WeAreTheHeroes although he has terrible constipation, which can cause confusion and delirium.

We gave my Dad the option - choose his own care home now while well enough to do so, or wait until it was urgent and essential and let us choose one for him. He chose the second option, stayed home for a short while, and then we had to find him a place urgently. It was actually lovely, but he moaned endlessly about it and said he wished he had chosen one himself. You really can’t win sometimes.

@MyrtlethePurpleTurtle great link and other points, many thanks 🙏

Another factor in this is that my and my sibling live in other countries, and so although we don't want to rush him into a home for our convenience (at all!), the reality is that we can only be here, making things happen, intermittently.

Hi OP,

Sadly a hospital admission is often the catalyst for entry to a care home. Was the case with my DF last year.

One thing to share is that after me and my DM felt horrendous guilt and angst and stress about this decision we had 'made' - but after a few weeks this subsided, and we realised it was really not before time, and he would have benefited from it earlier. This is not at all unusual, and everyone (without exception) I have spoken to who have been through similar have felt the same.

For us we were living with him and it became slowly more unmanageable. One day I realised that the three adults in the house had reached an unconscious agreement that nobody could leave DF in a room on his own safely ever. Effectively we were tied to the house - we couldn't even go in the garden together. Its like the frog in the boiling water! You may not have engaged with this because you're not living with him, but I think you may find he's much further along this line than you've realised. People manage with dementia right up until they can't manage - and that sounds like your DF.

If he goes in a home now you won't be spending your time arranging hospital appointments or carer visits or worrying: you'll spend your time with him while you can.

Believe me when I say that managing all this yourself (even remotely) will be a massive undertaking and stress. Have an imaginary conversation with him as he was lucid - would he be asking you to give up your life up for him - or would he be saying that he wants you to put him somewhere he can be safely looked after and free from anxiety so that your time with him is family time and not admin?

@Catgotyourbrain that is such an excellent post and exactly what I needed to hear. Thank you 🙏

When this happened to my MIL, the hospitals suggestion was that they discharge her to a nursing home for two weeks respite. Once she was there and comfortable, it was extended and then became permanent without her protesting it.

@saraclara that's a thought, thanks

Also, does anyone have power of attourney for him? Does he have capacity? Really important to sort if possible.

@thesandwich no, we were sorting out PoA before he went into hospital but it wasn't completed. We now think he won't meet the threshold for mental capacity 😬 I think they're assessing that tomorrow.

This has been a wake up call about getting my own affairs in order, giving someone PoA etc.