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

[Totallybannanas]

My dad has stage 4 oesophagus cancer and is terminal, he lives alone. At the moment he is still mobile, but getting but very down and fatigued. I've been off sick, due to his diagnosis 6 weeks ago, 2 hospital admissions and the fact he was poorly after this hospital stay and extremely malnourished. I've stayed down initially and visited daily, bringing special meals and giving company or attending appointments. He has become emotionally and physically dependent on me. We have temporary carers coming in, as part of his discharge plan but they are planning on stopping these. To be honest they don't do alot they pop in for 10 mins and he has had different carer every day. We have a local district nurse and are under the hospital palliative care team. So far the nurses have visited once to do an initial visit, we have then been handed a bunch of phone numbers to ring.

My dad would like to go to a hospice but we have basically been told no chance, as there are only 12 beds and we will need to go on to a waiting list nearer the time. My dad's other option would be to stay at home. Now , to my shock we have been told we would only receive 2 care visits per day. They could offer some night care, but this wouldn't be guaranteed. So basically, there would be periods that he would be on his own! Would they even do this? If I refused to stay there, would they leave him alone? I feel under amasive amount of pressure to give up my job and care for him. It would only be me.

The alternative option is a nursing home, however he doesn't have savings or property. I've looked at the nursing homes, and none of them advertise that they take CHC funding, it's another exhausting mine field. I'm mentally, tired chasing for things fighting for things. No one is offering me any practical help, everything is on me and the pressure and guilt is on me. I've had to ask for a TEP form and chase this up, Just in case medications, attendance allowance which has now stopped his pension credits, I have range 3 times to sort this, then ringing the nurse every time dad thinks he is dying. Fighting to speak to the GP, who has been useless. I'm tired already and want my life back. I now have a work meeting to discuss a phased return and I just think I'm being pulled in every direction, I just want to scream 😭

Oh and I get it's important to keep your job, but you only get one dad! So what the fuck am I supposed to do? Even if I did give up work and care him, where is the rest of the support?

You will be entitled to a place in a care home if you cant care for him yourself and he requires 24 hour care. If he has no money this will be paid for.

Sorry, it's a stressful horrible time I know.

As others have said he will be entitled to a place in a care home for free if he needs round the clock care. See citizens advice.

@Totallybannanas no, trying to find support is difficult though

I'd suggest contacting Marie Curie, perhaps ask about a palliative care social worker.

https://www.mariecurie.org.uk/information/getting-care/palliative-care-team

Can you afford to pay privately for an extra 2 visits a day from carers? Ie 2 visits funded, 2 privately funded.

She said her dad has 0 savings

She said her dad has 0 savings

This is horrible to read OP and I totally sympathise with you.
Are you completely on your own? Dad your only surviving relative and no siblings?

You should be able to get him into a nursing home and have CHC funded care. The nursing home will often push this through for you. None in our area advertise this though.

Suggested routes depending on how your local system is set up:

Normal routes through this would be either the GP, adult social care or the hospital palliative care team. Have you tried any of those?

Edited to say I missed the ref to GP. Ask to speak to the practice manager, threaten a complaint if needed.

Has your dad had a Care Needs Assessment ( CNA) and an OT assessment, separate to the discharge team.? If not, contact his local council adult social care and report him as vulnerable and request the CNA.

Where I am, we can go online and complete a questionnaire for the OT assessment.

With his diagnosis , he is likely eligible for attendance allowance, which could possible pay for a bit more help.

Check with Age UK. / MacMillan for advice.

When it was my mum, I took a leave of absence to be with her, but my company were pretty good about such things, and I had been there a long time. Is that something you can look in to?

Sorry for what you are going through. End of life care for a parent is really tough.💐

Has he been granted CHC already? Most places local to me take it, can't think of one that doesn't.

True, but that doesn't mean she couldn't afford to pay.

If you have sick pay remaining, you can continue to be signed off with stress. Clearly, this is a stressful situation and unless you can perform your role 100% this is appropriate. It’s also generally better to have one continuous bout of illness vs multiple shorter stints.
Don't quit your job though. There will be a solution, and quitting it isn’t it.

Why do you think he can't be left on his own if he only requiring pop in calls?

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/

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.

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.

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.

The thing is at the minute he doesn't need 24 hour care, he needs supervision with his medication and food cooked. He's lost confidence and he is getting fatigued, his legs aren't as strong. He is slowly declining, especially mentally so if I didn't go down he wouldn't eat, he would do his medication and he would.just be sat in the chair. It's this in-between stage. He is ill but not quite ill enough! I've rebuilt him after his hospital stay, but he isn't the same person. He needs supervision and TLC.

And I need peace of mind!

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.

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.

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

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

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