Elderly parents
DF dying, again, in hospital but wants to be home
Needaholidayyesterday · 18/02/2023 21:29
I posted on hollypock’s , but actually probably need to start my own.
DF is dying, again.
He was last week, then rallied, several times on repeat, and now is nil by mouth and we are looking at palliative care unless he makes an enormous improvement in swallowing by tomorrow.
He desperately wants to be at home, has dementia but is relatively lucid today.
I have absolutely no idea how to do this. He’s incredibly frail. He’s on oxygen, can I even bring him home with that?
how do I get him discharged, who should I ask to speak to in hospital tomorrow. His carer thought earlier today that he was approaching the end, and then 4 hours later after I drove far too fast half way up the country, through tears, only for him to perk up again.
Needaholidayyesterday · 18/02/2023 21:46
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NamelessNinja · 18/02/2023 21:53
So sorry to hear about your dad, be kind to yourself you must be exhausted from this going on for weeks.
In the morning/unfortunately potentially on Monday ask for referral to hospital palliative care team. In our hospital we call it 'Rapid home to die' when we anticipate someone is in the last day or two or their life. It involves an OT ordering a hospital bed etc for home and he would go home bedbound to be cared for in the bed, a separate team could organise oxygen for home if they feel it is needed. But unfortunately only generally happens if family are happy to support with care/already have care available. They may be able to get fast track funding approved if not already? But often this takes too much time.
LifeIsReallyGood · 18/02/2023 21:54
Absolutely get him home where he wants to die.A lot of patients do rally before the end.Sometimes they are waiting on a family member to be able to say goodbye,and sometimes they are waiting to go home.
Hopefully hospice will be able to get him home asap and keep him comfortable there.❤️
Bluebottomedsheep · 18/02/2023 21:56
Can you phone your local Hospice and ask if they offer a Hospice at Home service?
If they do ask if you can self refer.
I did this with my DM and they were wonderful.
People often assume that Hospices only treat patients with cancer but that is not strictly the case.
LiquidGlee · 18/02/2023 22:00
You could ask to speak to the complex discharge planning team. In my trust they can do a fast track referral for care if prognosis is less than 6 weeks, but this is usually easier when palliative care team are involved. There is however still sometimes a wait for care even on the fast track route. Home oxygen can be delivered at home nationally within 4 hours so that shouldn’t be an issue.
Needaholidayyesterday · 18/02/2023 22:08
Thank you all
Knew I could count on you lovely next of vipers
In my day job, when I get a chance to actually do some work, I’m sort of the 24/7 maintenance manager.
My contacts list is full of the correct people to call for work related crisis, but this is just beyond my remit or understanding. It’s not plumbing ;) I understand plumbing.
Thank you.
Right.
I’ll do all that tomorrow
4 hours you say? Even on a Sunday?
So I could have him home by tomorrow evening drinking wine from a sponge stick.
NamelessNinja · 18/02/2023 22:22
4 hours is the aim for us doing our assessment in our hospital, I imagine would be similar in others. However you're probably right it will be trickier on a Sunday. If you can be making some of the calls, e.g. to local district nursing/Macmillan nurses/existing care agency then it might speed things up. Ask to speak to the nurse in charge/palliative care nurse/OT and make sure they get the ball rolling tomorrow at least.
He will need a hospital bed if he hasn't got one so clearing space for one is something else you could do tomorrow if you're not making quick progress with the planning on the hospital side.
Just make it really clear that his wish is to return home for his end of life. Your dad is lucky to have you on his side trying to fulfill his wishes!!
LiquidGlee · 18/02/2023 22:22
It depends on if you feel you or other family can provide care for him to ‘bridge the gap’ until a package of care is sourced. You also may struggle on a Sunday because it’s possible there is no palliative or complex discharge team cover so it may be Monday more realistically. Especially if you will need specialist equipment e.g hospital bed delivered.
Needaholidayyesterday · 18/02/2023 22:35
He fortunately already has an amazing live in carer who is very experienced in end of life care
Moving furniture is totally my remit.
I can do that.
He won’t like the hospital bed but it would make moving around his bedroom easier.
Thanks lovelies
I can do this 💪
He will be home, if not tomorrow Monday at the latest. Unless he remembers how to swallow, then he’ll be home without the hospital equipment, but that seems unlikely.
Now just need to organise a band, long story but I’m determined he is accompanied on his final journey by live music , a delivery of his favourite wine, and to see if I can squeeze him into a my Dh’a sports car for a final drive out.
MoserRothOrangeandAlmond · 18/02/2023 23:00
Sorry your going through this OP, the thing is when a person goes home to die most of the care is down to family members.
Nurses and carers pop in but being on 24 hour duty is the family and I think people don't realise how hard it is.
I work in palliative care in the community.
You say he has dementia, does he know where home is?
I'm only asking as my grandad constantly asks to go home, he's had Alzheimer's for 14 years and doesn't know who we are or where home is. He didn't recognise his own home.
If those things are in place and you can manage, you can have 02 at home.
Hope your father stays comfortable xx
Nat6999 · 19/02/2023 04:15
Ex fil was discharged on EOL 4 weeks ago with terminal cancer, it took about 3 days from him saying he wanted to go home to him having a hospital bed, commode & hoist delivered, carers organised & him arriving home. He was given no more than 3 weeks to live 5 weeks ago, since going home he has perked up, is eating, very chatty, is reading & doing most of the things he used to do. Ds said to me that if you didn't know he was dying you would think he looked well.
Needaholidayyesterday · 19/02/2023 04:31
Wow, thank you
Glad your ex FIL perked up since coming home
that what I want for DF
Plus no masks. He’s very deaf as it is even with aids and needs to lip read, or for us to shout. And that’s just not fair on other patients. He’s currently on a lovely respiratory ward, so masks are mandatory at all times.
lightlypoached · 19/02/2023 05:17
Hello OP. Just popping in to say how lovely you and your dad sound.
I hope you get it all sorted and give him a splendid, fitting send-off.
I remember vividly being with my dear dad at the end. We played music and chatted and laughed. Just as he would have wanted.
Sending a viper-hug 
Needaholidayyesterday · 19/02/2023 07:55
You are lovely vipers
As are my friends.
one is right now waiting for the shops to open to buy a bottle of something very special 🍷 in France for him. To suck on his sponge.
Another is my back up plan to help kidnap him out of hospital if plan a) asking nicely fails
The band haven’t got back to me yet, but they will also be the distraction. If not, they are on my phone playlist.
Dad would love this. He’d be plotting with us if it was anyone else in the same situation.
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