I am fucked aren't I. Lack of palliative care means I may have to quit my job!

Yikes, that sounds so tough. Does the hospital have a social worker who could help you? And/or an adult social care assessment.

alternatively, and I know this is a big ask, could he move in with you and you could have the carers and nursing care come to you?

when my father was ill, he wasn’t discharged home directly, and the NHS agreed to send the post discharge carers to me even though it was a different borough. I appreciate this is different from someone already discharged but it worked quite well. In this way, you could continue to be nearer work ?

thinking of you .

The continuing care assessment is NHS, not social services. Very very difficult to secure.

Ensure ?

Relatives are not required to pay for care. He will be assessed on his own means, not OP’s.

Do you have a palliative care nurse at all? I would think your dad may qualify for a fast track placement in a nursing home (you can choose still, to an extent). This is what happened with my dad although appreciate it was 6 years ago.
im sorry you’re going through this

Sorry I haven't read the whole thread. If you have a carers organization local to your Dad they can provided practical advice and signpost you to local services. You'll find details of your nearest carers organization here The Carers Trust network - Carers Trust
I'm sorry you are having to cope with all this.

Could you get your GP to sign you off with stress, at least until summer then see where you are at after the school holidays?

My own dad died with similar cancer, his eventual death was very sudden.
Has he got the milkshake things to boost his calorie intake?

I think this is the whole point of her post? He can’t be left alone and they are only giving him a pop in calls which they are also going to stop. I think you might need to read her post again.

Ask for a proper continuing care assessment from adult social services at your local council. Also contact Macmillian for their advice. If he doesn't need 24 hour care you are unlikely to get a funded nursing home place, but he needs a proper assessment.

Are you in a position where he could move in with you? It totally depends on your relationship and space but it might make you feel he is safer. The carers would come to your house when you’re at work and to get him up .

Your GP ought be helpful, so make him be so - he should have the information on care homes. If your dad has neither savings nor property his care will be covered by the local authority.
If necessary if your GP really is useless go direct to a) social services b) your local council and play hell. Your dad deserves to get the care he needs more than he is receiving. 2 ten minute visits a day to a terminally ill old man is not enough and much less than you are entitled to.
You could also try the hospital social worker - very helpful in my late DM's case.

Hi. I think I am only reinforcing advice you’ve already been given. But, for what it’s worth and from the perspective of someone who has worked in the health and social care fields for 20 odd years now, the phrases you want are…

The situation will breakdown if my Father is not offered support
I could lose my job if we are not offered support
I live X distance from my Father and I am not able to sustain this situation safely

The Adult Social Services Dept at your local council should assess and step in, even if you are signposted to CHC.

Sad to say, and it depresses me and it really isn’t right, but if “the system” thinks you are coping, you will go down the priority list.

Good luck. You are important in this situation, so take care of yourself.

I really feel for you. When my late DP had terminal pancreatic cancer, I took six months unpaid leave to be with him then returned to my job after he’d died. Would your work consider this?

Sorry, I've only read your updates and few other posts, not the whole thread, I can see people have mentioned Macmillan, but here is the link to their helpline services. Give them a call as they will be excellent at supporting you through this.

It's all very tough and I'm so sorry you're going through this.

Obviously I don't know your living situation but if you have 2+ kids, could one of them possibly give up their room to share with their sibling so that your dad can stay in their room? Or could you and your DH sleep in a sofabed in the lounge while your dad stays with you? Obviously not ideal, but the living situation is likely temporary (sadly) and you could explain the benefits to your children if they are older.

Best place for his palliative outcomes will be with family and it's stressful having less space and having him there to look after, it might be less exhausting than travelling to him on weekends and fighting with his local council from a distance to arrange appropriate care.

Agree with others that whatever you decide, you definitely should not quit your job.

Sorry to hear of your situation. He should get funded care home. My friend was admitted to one in her final 5-6wks and it was fully funded. You’ll need to push for this.

When I worked at our local hospice you could make an appointment to speak to someone who knew all the contacts re nursing home care which our council would fund.

I would reach out to them, the council, Marie curie.

I've posted before about my experience with OC as I had it and my twin died in his 70's of it .
Everyone is different I know but my twin was mobile and able to self care ,wash ,toilet etc until a couple of weeks before he died in a hospice .
He did live with his wife who had more significant and limiting issues than him but he didn't need or get carers .
He did struggle to eat but as others have suggested used fortified drinks provided on prescription by the GP.
He did need emotional support and I wonder OP if this is also the priority for your father ?
I think a previous poster's suggestion of Alexa and being able to keep in close contact with that might help .Sadly nothing will be ideal.

I am so so sorry

my grandmother went into a home, she was in the limbo between too high needs for home but not ill enough for hospital. this cost was met by the nhs as it was cheaper than hospital. Certainly in your case if he has no savings it will definitely be met.

your about to have the battle of your life with social services, you need to push and push and push for them to do something. Is he in a council property? That may buy you some leverage (although one departments budget won’t help another). You need to just keep on and on and on at them. Keep having his needs reassessed. If he has a hospital admission refuse to have him home as best you can.

One of my grandparents had dementia and I did some of the care for her. I cannot tell you the relief when she went into a home. I was able to just be a granddaughter again, not the carer.

I wish you the very best for this it’s hard and awful all round.

This is very good advice.

My experience of the system is it's utterly broken. Have heard terrible firsthand stories of people being left in faeces for days as carers don't turn up. Carers turning up and immediately going into the garden to vape and doing very little. There's no accountability, so if you're not going to be able to be there, a care home is better IMO or at least have a 'Dad cam' so you can see whether they're actually doing what they're supposed to.

I have a relative in a care home that doesn't accept CHC funding but ultimately it's social services job to find him a place. You DO need to get arsey with them and try and keep everything in writing or recorded - they tried very hard to avoid this with us. Sorry to say in my relative's case it was fairly clear social services would have been happy for them to die to avoid the paperwork and didn't do their job to the point this may well have happened had not family stepped in. They are paying for their own care, however so it's a bit different and we were able to just go ahead without SS.

My relative is in a fantastic care home with fantastic staff and is much happier than at home - you just need to fight to get him into one. This is I think a much better option for him and for you, you're less likely to burn out and you can visit often. You will be able to spend quality time with him rather than being totally exhausted and at breaking point. Doing 24/7 end of life care is exhausting (how long for?) and more so if it's a loved one - in a care home the staff are on shifts, they're not 'on' all day and all night.

I would absolutely not take on end of life care if it's just you, if you have family members who are reliable and who can take turns that might be a bit more possible, but IMO care homes are generally better for all involved. How does your Dad feel about that?

I'm glad I'm not the only one. I can't watch the adverts or participate in the fundraising as I feel so bitter. I know that the nhs and these charities are underfunded so under resourced but as you said, it was also just the how dismissive they were too. The way my mum was treated in hospital in the last few days before she passed was shocking.

Been here with my dad it’s physically and emotionally exhausting no one seems to want to help he had dementia and lots of other medical conditions
get yourself an adult care social worker and contact care homes etc tell the social worker you can not look after your dad as they will just leave you to it I was left for 9months until I just broke down and told them I was gonna leave him at the local hospital (I wouldn’t have but needs must) people will leave you to it as unfortunately your just a number to them good luck it’s a tough journey take lots of pics write things down record his voice etc you will be grateful for that xx

That's what I was going to suggest what assets has he got as well. I think op will stand a better chance if she pays 50% and social services pay 50%.

Oh OP my heart is breaking for you…. You sound stress and at the end of your tether. I’m so sorry !

I know this is my future too as I’m an only child with a mother in early stage dementia.

I’m self employed and the main bread winner so if I don’t work, we’re fucked !!!

my mum refuses to admit that she’s at this stage, but more and more dependant on me, so I’m split between her, my partner and young son and my business, what do I put first ?

I want to hide and just ignore it, but not an option I know !