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 😭

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.

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?

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.

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.

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 .

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.

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.

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?

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.

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

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

Ensure ?

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

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 .

Fast track CHC fundibg is for 12 weeks or less to passing away not a terminal diagnosis. OCancer has a prognosis of 1 year. This is not set in stone of course but but social care will provide care when he needs it I'm not quite sure why you think they won't

Please do not give up your job. Your dad would not want that.

Nope. None of this in my experience. GP had no clue apart from a referral to social services. Hospital social worker was worse than useless. Advised us my mum was entitled to six weeks free home care on discharge from hospital - the reality was a £1000 bill with a threat of bailiffs if she didn’t pay up. The care system is broken. I am disabled and in a wheelchair and so is my partner. My mum has dementia - advanced. We were left to get on with it - SS care, was woefully inadequate. Two out of the four care visits she paid for just didn’t happen and any excuse not to shower her. Two male carers turning up most days to do personal care, which caused untold distress. We are now breaking ourselves financially to provide private care for mum because what SS provide falls far below what’s needed.

I am so sorry to read of your dreadful situation. As another comment….your dad should get a place in a care home funded by the LA if he has no capital. Can you approach your employers and apply for extended leave? And please try and get social care involved, they aren’t there to judge it’s their job to help and support both you and your dad.

Of course. But if he isn't entitled to enough visits she could perhaps pay for additional ones.

GP can't do anything except refer to social care, that's their role in this . Nothing else

This. The more relatives make themselves available for care, the more the authorities will let them get on with it.

Why ? He’s entitled to a proper care provision assessment and the provision entitlement can be challenged before OP goes down the road of offering to pay for the not inconsiderable extra cost.

When my Dad was diagnosed with liver cancer, he was given 4 care visits a day but the reality is that it was a different carer each time who didn't know where his medication was/what to do and it just stressed Dad (and me) out. The district nursing team were a joke, Dad couldn't get up to push his entry buzzer, there was a code for the building but no one ever read the notes before recording yet another failed visit His mobility went in under 2 months, so he went into a hospice for nearly a month and then was discharged into a nursing home as he couldn't be left at all by this stage and I couldn't give up work (run own business). He died less than 5 months after diagnosis. It was the most horrendous experience, OP, and I wish I could give you hope but you have to be bolshy, pushy and very vocal to get anywhere. My only ray of light was the palliative specialist nurse who pushed just as hard as I had to. I'm so sorry you're going through this.

Have you ever tried to secure CHC funding ? They will fight you at every turn, including disputing what constitutes a terminal diagnosis.

You need the CHC sorted first
From either his OT, social worker or palliative district nurses
It's a checklist then a form
As others said it'll be fast tracked

I would hold off on phased return for now or do one day a week

Then you find some local homes or hospices - ask district nurses, local Facebook page, his friends for recommendations - phone and ask if they take CHC - then go view them

You say he's not ill enough but he would be without you acting as a buffer
So when yiu discuss his needs or fill out his forms talk about what he is like with you not there - so unable to feed self, not cognitively able to recognise own needs for feeding, medication taking or toileting etc. Needs to be what he's like at his complete worst
But he will be eligible for CHC regardless tbh

I'm so sorry this is happening <3
It would be nice if he could live with you or if you moved in with him temporarily I suppose. Hospices are nice places though.
It is hard. You do have to fight and push and push. But remember to spend the time with your dad and not stress too much. He's comfortable at home right now. It will get sorted eventually, the NHS is not joined up and things tend to happen in crisis and in dribs and drabs..And you don't want your last time with him spent stressed out and constantly taking it for granted. So try and take him out for some nice days out with your children on your time off work/phased return. Blue badge means free/reduced national trust I think