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 😭

Unfortunately this is happening so often...I know due to a similar situation...firstly you need to get your Dad a social worker....they will help you get a nursing home....YOU must not give up your job life etc....a family member did this and ended up VERY ill themselves...and had a breakdown 😢

Ask district Nurses or GP surgery to complete fast track assessment for CHC funded care, xx

If you have chc funding you should be able have a nursing home place. My dad is in relatively expensive nursing home, that does not take council funding, but they do take chc funding. It is not capped in the same way that council funding is. However, even if he is not eligible for chc funding (which it sounds like you think he is) if he has not assets he should be eligible for council funding, if he needs residential or nursing care. Not all care homes will take this, but many will. I believe chc funding can be accelerated if for end of life care too.

Does he have a social worker you can talk to? Also speak to the Macmillan nurses as someone else said. He may also be eligible for PIP or attendance allowance.

I really hope you don't have to give up your job unless you want to, there is support out there.

I see OP has updated since I started my response and my observations and questions are just repeating those others have asked, so I've deleted.

This is NHS responsibility not social services.

My DF died of oesophegal cancer. I am so sorry you are going through this. Macmillian were super helpful for us and helped us navigate through. We did not have to pay for anything but I can't remember the details of how that worked; what I can remember was that we had a sequence of things that happened too late (e.g. four times a day care put in place by the time he needed night time care; night time care by the time he needed to be in a hospice). The ambulance was called out a lot, and that was what triggered the next intervention. I would go back to the GP and be really clear that he isn't eating if you aren't there. My DF did go down hill really quickly, and it was a blessing, really: and losing appetite and not eating is actually a really natural part of dying. Sending you a hand hold as you navigate this really tricky time.

Sorry if this has been suggested, but Age Concern would most likely be able to help with this. They have help 'hubs' (I noticed this when I used to live on another city) but I don't know how prevalent they are.
They offer really good advice and they are a charity.

So sorry to hear about your situation. It's terrible.
I had the same, my mum had stage 4 cancer and was in agony and we got 0 help. I spent hours and hours begging for help but nothing. Had to look after her myself and take leave from work. I've never felt so let down by the NHS, Macmillan and all the others who I begged. I hear so many post on here and others about the support their families got and feel very bitter and angry although I know I shouldn't. I think it really depends on where you live.

Very sorry for you and your dad OP. I moved in with a parent after an illness ( now recovered ) for 6 weeks but continued to go to work during the weekday with some time off for appointments . I just made sure breakfast / lunch was ready for them and a sibling would drop in for an hour whilst I was working . Is this something you and your dad could manage ? It’s really tough being a carer and no one appreciates how stressful it is. Xx

This . It really is sad how little support is given post hospital discharge . I think they basically just rely on “ supportive family “ taking over in most cases.

OP, I've nothing to suggest.
I just want to wish all the best as possible for your dad and you! I wish you both get all the help and support in need!

Sadly I suspect he wouldn’t meet the threshold for residential care just yet (not in my area anyway). I think you’d have to push for reassessment with social services to see if they’ll pay for extra carer visits and you visit when you can. Palliative and hospice care will kick in near the end. Sorry to hear you’re both going through this - it’s tough.

Did you read where he won't eat?

OP can apply for attendance allowance for her dad. It isn't worth applying for carer's allowance if you have a job. The rules are very strict and you are barely allowed to earn anything. Attendance allowance is not means tested and is tax free. The forms are long and lots of evidence is required, but OP's dad would qualify.

If he is still in hospital, can you say that it will be an unsafe discharge. State you can't provide care. Can sometimes get 6 weeks respite care on discharge.

When DF was in hospital and had terminal cancer we stated this. They then looked for a care home for him, he didn't have any significant assets. He deteriorated rapidly, so discussion moved to nursing home. Hospice told us he wasn't ill enough. Unfortunately he died in hospital before he could be moved. But his finances were not a barrier to these discussions

It's awful and I feel for you.

My father had terminal cancer and also needed the local hospice. They turned him down even though they had a bed since wanted to have people go for short stays so kept it empty - his would have been short anyway due to death looming. My father had previously raised money for the hospice but the local one seems to be run by people who pick and choose which individuals they might help. Will never help them again.

Sorry practical advice, ask for an urgent assessment of need and describe how you work and what you can't do. They will find help for him.

It's awful, I remember it well.

When I was nursing my Mum I basically said to my employer either you give me some sort of leave arrangement or I'm going to have to quit and I won't be able to work my notice either so that will also be stressful for everyone. They gave me half pay for a month and unpaid leave afterwards and let me have my job back. I appreciate not everyone is in the financial position to do this.

When my dad was diagnosed with the same thing your dad was my mums work gave her unpaid leave for as long as was needed.She had 8 months off before my dad went into the hospice.She was happy they kept her job for her but it was so hard. I am so sorry for all of your family and you and especially your dad Op.It is pot luck and a shocking state of affairs to find yourself in,and when everyone is vulnerable and in shock and hurting the very last thing you need is to have to battle for help. I am so sorry

I feel the same @DottieMoon
In fact I feel myself getting quite angry when I see the tv adverts for Macmillan as they were so unhelpful to us, almost dismissive.
Ironically, I used to make a regular donation to Macmillan and have done the coffee morning fundraisers a few times, not because my family was previously affected by cancer but because I believed those adverts and thought it was a good thing. I have cancelled my direct debit and switched to supporting Cancer Research now. I'd rather support a charity with more of a focus on preventing people ending up with the awful death that my MIL endured rather than one that claims to help people who are in that situation.

As you are a TA there's at least the summer holidays on the horizon so could you keep submitting a sick note until the end of term?

Are you in a union? Perhaps they could advise on the possibility of extended unpaid leave to care for him. I know someone who got their job held for a year to care for someone in a similar situation although they were in retail management rather than education.

Yes this OP, the Macmillan Nurses are amazing. Please get in touch with them.

Hi, if he is terminally ill and dying he will qualify for CHF. Might not get it immediately as they make you jump through hoops. If it's what your dad wants he could go into a Nursing Home. He should still qualify for care at home too but it might not be 24 hours. I had to arrange for my dad to go into a home because the hospice said he couldn't stay as his death was imminent and he still had several months. I wanted for him to stay at home but I just couldn't do it as I was pregnant at the time.

When we were in a similar position with FIL we were told up to 4 visits a day could be provided but if more than that were needed then it was cheaper for them to be in residential care - it's all about cost at the end of the day. You do have to push and fight for everything though, you have to be clear that you will not be able to look after him - because if they think you will then they will leave you to it.

I'm sorry you're having to go through this OP

Definitely contact Macmillan, they should be able to help you navigate the care and benefits system. The answer will be there somewhere, but the system isn't at all easy to navigate. Is he out of hospital now? You mention a discharge plan, so I assume he's not considered able to simply discharge himself without an adequate care plan in place? If not, explain that he doesn't have anyone to care for him as you have used all the leave you can with work and need to return. When my Uncle was in hospital at the end of his life, the hospital assumed my 80 year old Mum would care for him on discharge even though he'd been behaving in an aggressive way towards her and refusing medical treatment.

Agree with this. CHC is for medical need (funded by NHS), not just help with personal care and meals/meds etc. But you can still get council funding for a care home if you 'pass' their needs assessment. Social services at your local council will give you a list of care homes (nursing home probably not needed) which take council funding and help arrange a care assessment to see what his needs are and if he will get the funding. My Dad is in a care home (self-funded until his money runs out) and they do everything for him, the staff are wonderful and so caring, and the GP visits every week. My grandma was in the same place for the last year of her life and passed away peacefully there.