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 😭

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.

This is terrible.

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.

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'm a teaching assistant, so can't work from home. What's the best way to find out about nursing homes? None of them seem to advertise if they take CHC funding and that's if we can even get that 😞

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.

He's also struggling with his medication. He had his Just in case medications, which I said he would be getting and then showed me. He had no idea what they were and thought he would have to break the bottles to take them as he thought it was for something else! He isn't a stupid man, he just is overwhelmed and confused. He is 80 years. It's like he has mentally aged.

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.

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.

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.

If I could I would. But we don't have an extra room. I've a open plan kitchen dinner. I think he would want me to live with him.

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.

His GP doesn't have social prescriber

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.

No care home advertises that they do CHC funding, because that's not how it works! You're not paying so why would they advertise it to get your custom? You need to contact adult social care and your dad's cancer nurse, then as and when the assessment is completed and finding comes through, a nursing home will be found for him.

Do you have to give up work?

dh took extended leave- most unpaid tbf but he claimed carers allowance which isn’t a lot but paid some of the bills while he was with his mum at the end of her life.

but at least his job was there when it was over.

can you speak to your employer? If you’re a TA presumably you’ll only need 6 weeks or so
leave then you’re off till sept…

I don't think you should give up your job. Certainly put your Dad on the waiting list for the hospice care. And contact Macmillan amd Marie Curie. Unfortunately I've heard that when the Council is paying for care then only minimum possible entitlement is provided.

I know if I don't go down daily he will decline alot quicker, he will not eat and he not mobilise. We have upped his anti depressants, and whilst this worked a little the reality is he doesn't want to be on his own. He is extremely anxious. He wants someone to do his meals (soft diet, I've tried puried foods from Wiltshire and they were horrible), to do his medication and just provide comfort and reassurance that someone is there. Previous experience of NHS 111 has made home feel alone.

He is also scared of dying alone and who will look after him. There are no reassurances or definite plans.

Have you applied for carers allowance? (I really don’t know the requirements but just suggesting it in case you can get it)

Does he have wifi? Could you set up something so that you can easily talk to him throughout the day. Amazon echo can be set up so that you can ‘drop in’ any time and speak with him. You can set it up so that he doesn’t have to touch or do anything. There are lots of similar systems that might be better as purpose made for situations such as yours.
You could even just set up security cameras that you can talk through as that would be very inexpensive and easy. You would be able to see what he is up to and you could talk to one another. He would be able to see you though.
You could rent a temporary mobile wifi hotspot if he hasn’t got internet already.

Obviously you will still need to go down but I wonder if something like this might help a little.

im so sorry you and your Dad are having to deal with this. He is lucky to have you.

Fortunately you've heard wrong.

My dad was dying of heart failure and had palliative care in a lovely private care home and no payment was required. It's medical care not social care.

My mum had fantastic palliative care for terminal cancer at home provided by NHs/local authority.

People might need a bit of a kick to get it sorted - the hospice, Macmillan or Marie Curie should be able to help you with the red tape.

What you require and what you get are two very different things from experience. Also an elderly person with cancer may deteriorate very rapidly.

I think you need to see your own GP and get signed off work first of all then look at different options for Dad. TBH if he has oesophageal ca and is already frail, he probably has not got much longer to live. Can you speak to the district nurses and ask if they can expedite care and go over the options? But firstly get yourself signed off and speak to your manager/head to explain.

He has a aggressive form of cancer. He could deteriorate quickly. Like I said if I didn't go down he wouldn't eat or take his medication. His carers don't do anything and literally pop in for 10 minutes. He is giving up mentally.

Ok. So your father is terminal and he has a primary health need - cancer/EOL.

He will be entitled to the CHC fast track pathway. This needs to be done ASAP.

He can continue to be looked after at home - but you have to fight for it.

All nursing homes accept money - they don’t care wgere it comes from: health, social, 50/50 mix.

The first thing that needs to happen is yhd CHC being out in place

Then go from there.