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

I’m so sorry OP it’s a really shit situation, and especially shit when you are stuck in no mans land where the person is really too ill for you to be comfortable with just care visits but they are not ill enough to qualify for a care home place- especially if you can’t self fund.

What we found was that if you’re not able to fund yourselves, it can be a real battle to get a care home space because they have to be assessed as needing round the clock care which is a very high bar, rather than you/them just not wanting to be alone. We had this battle with a grandparent and despite the fact we felt they did really need care home, it was decided that they could be fine with visits for meals/medication and they will always go with the cheapest option. Sorry Op, it is rubbish.

If you don't already belong to a union, join one - they are usually invaluable for advice and support.
Keep up communication with the school about your situation.
Contact your GP for support - it might be that they need to sign you off sick for a period of time, for your wellbeing as much as anything. Hopefully this will get you through to the summer holidays and then you can relax a little and manage the situation better.

Also, ask the GP surgery (you don’t have to speak to the GP) if they have a social prescriber. These are basically care coordinators who look at individual situations and see what is available to help.

Could he come and live with you? He’d still be on his own while you were at work, but most of the time you’d be around, and in a few weeks it’ll be the summer holidays.

You need to contact SS. Care homes often don’t advertise CHC funded care but do provide it in conjunction with a direct approach from SS adult care. You need to get them involved in your dad’s case. It’s an awful situation and you need to leverage SS adult care and not try to navigate this independently.

Sorry to hear about your dad 💐

I don’t know how to help with regards to getting the help you need, but from reading the thread other posters have some really great advice and I hope you can find a solution soon.

I just wanted to say please try to avoid quitting your job as that might be the only thing that gives you something else to think / focus on otherwise it may become very lonely. Would your workplace offer some kind of career break until you’re able to return?

Sending positive thoughts on your way.

You will be able to get him care if you refuse to do it.

social work etc won’t step in as long as they think there’s any chance you will do it.

you need to be tough to make this happen.

then you can go back in once it’s at up.

with work - can you negotiate temporary wfh or a leave of absence so you still have it to go back to afterwards

get onto to the charities for advice and help - Age UK and the cancer support ones

good luck and try to look after yourself too

I did give up my job to look after my dad. It was the most rewarding experience but also the most challenging. I managed for a year (he had dementia) and trying to get support was so difficult. Every time I thought I was getting somewhere I would be pushed back. Is your job the kind that would let you take extended (unpaid) leave? Someone I know has just taken six months off to be with her mum who has cancer. I guess giving up work depends on your age and career. I was a teacher and thought I would just go back to teaching at some point but after a year coping on my own followed by my dad going into a care home (I still visited every day and had to take him to his many hospital appointments) followed by Covid I never did get back to teaching. I now have a much less stressful job. I can look back and be happy that I gave up work to take care of him but it was also very stressful at the time.

This is terrible.

I’m not sure you realise how high the bar is to get support.
From the OP’s description, he needs care if he isn’t able to eat when left to his own devices.

Macmillan are brilliant at sorting this sort of thing out. They seemed to have a lot of clout when we had similar with mum

she had CHC funding and got a lovely room in a private nursing home

You can get a social services needs assessment.

if they assess him as able to manage with four or under carer visits per day they will not fund a care home.

yes he will be left on his own while the carers are not there.

the system is shit, I’m sorry

The additional care will be put in place as he needs it, he doesn't now so he can be left at home and you can go back to work surely

Sorry you’re going through this OP. First of all, call Adult Social Services at your local council and they’ll arrange an assessment for him. The important thing is to say you work full time and cannot provide the care he needs. You could be entitled to a few things - either carers up to 4 times a day (they won’t sit with him all day) or they might give you an allowance for you to find your own carers/PA.

How is your dad overall? Is he up and about or is he sleeping a lot? Does he need someone in the house 24/7 or could he cope with a team of regular carers? Does he have good neighbours who might be willing to pop in occasionally too?

As for your job, only you can know what’s right. If you like your job and want to stay, perhaps you negotiate with them and see if you can take unpaid leave? Or could you work from home (specifically your dad’s home)? It all depends on your role.

My mum had terminal pancreatic cancer and lived with us. We got two visits a day from carers washing and dressing her and one from the district nurse for medication. A hospital bed and other equipment were provided at home. At end of life stage when she was in bed all the time it was four visits a day plus district nurse. She had a good, peaceful death at home, not in any pain. This was all provided on the NHS/local authority as it is medical care NOT social. You or he do not have to pay for private palliative care.

Macmillan, Marie Curie or the hospice charity should be able to help him get the palliative care he needs. My local hospice charity were an excellent advocate bit for my mum and me. They can also support you in getting counselling and support if you need it.

This is what we had for my Mum. She owned her own home outright but due to how quickly her cancer etc progressed she was given full CHC funding and received 4 fully paid care visits a day. When this wasn’t enough she was given a fully funded place at a nursing home - it wasn’t a hospice but was a nursing home with the nursing capacity to care for her (copd, bowel cancer, mental health issues / schizophrenia).

I had a very complex relationship with my Mum- I only lived 20 mins away but I couldn’t care for her; I’m disabled myself and have a disabled dc. Essentially you have to say you can’t care for them and stick by it. In my experience they will only step in once you’ve said no.

This is great advice. Don't assume that the 'discharge package' will be remotely related to the care needs that he might have ongoing, and the care packages that he might be entitled to. Basically the system is not remotely joined up so you will need to advocate for more care. Does he have a social worker? Time to get arsey.

A friend’s husband was discharged from hospital and is now on end of life care in a care home. This is free to them (not sure who is paying). They have plenty of savings so I think it is free as it is a medical need. They were just asked to arrange a place at the care home of their choice and luckily there was a good one near them.

You can have continuing healthcare (CHC) at home funded by the NHS -people aren't always told this. You need to request the CHC checklist is done with your input, then a DST (Decision Support Tool) which can be fast-tracked for palliative care.

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/nhs-continuing-healthcare/
There are also lots of companies who have continuing healthcare nurses and caseworks that can advise how to proceed and assist with your request, but they will charge fees.
Also many solicitors offer advice and a free CHC initial assessment-not a recommendation but this firm seem to have good reviews:
www.farleydwek.com/chc-services/chc-initial-assessment/