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

IME the 6 week discharge package from hospital is very poor .With a care plan and carers from an agency there may be more help .Some carers are very good .
Does your father want to move into a home ?Surely the upheaval would be exhausting .And there will be periods when he's in his room on his own .

Sadly I agree with below
This is the harsh reality: the system does not ‘care’ in the same way that a daughter does, and it is not funded to do so. It has obligations that it is legally obliged to meet, and that’s it. No social care service is going to do what you do, the way that you do it, because you really really care - and it doesn’t. The system does not have the resources to cajole and persuade him to eat or take his medication, or to endlessly explain things to him, or to reassure him etc.

Have you had anyone from you local hospice come out for a chat. Our local hospice did this. Marie curie we’re too booked up to do an overnight with my dad. My dad wanted to pass at home, there way my mum, my husband and me, and two carers twice a day, and it nearly broke us physically and mentally, the end was tough going on us all, 3 weeks later and I’m now feeling human, but now the onslaught of notifying everyone now starts.
my Nan lived in a council flat and got put in a nursing home for free it took her pension to pay for it, this is what you need to fight for, you can’t do it all alone.

No, but a combination of the two can be very good indeed. The carers did things that I could not do when my mum was no longer very mobile like washing and dressing her. The district nurse administering drugs. At the end I was really just playing music, TV and talking and reading to her.

OP, I hope this thread has been helpful and that you and your dad get the support you need.

As a teaching assistant, I wonder if you can take up to six months off work on full pay, and ask your GP to sign you off with stress. Can you check with your union/ you contract re the sick pay situation?

I'd check out local volunteer organisations. I live in a village and there's a volunteer group, started during COVID lockdowns, of volunteers who help out with some things. Lifts to hospital, chatty visits, collecting medication. Local churches often offer this sort of support too. Even a little bit of help can make a big difference.

Sorry you're in this situation op it can be daunting and stressful but the help is there.

Go on your local adult care site and speak to them, get a home assessment.
If he needs a care home ring up and go and view. They all have funded places barring the mega exclusive ones.

As others have said it isn't long until the end of the school year just get signed off with stress of it is making you unwell and use the Summer to get everything in place either carers at home or a care home place.

This is what I was going to say. I used to work in older people’s care and the fast track team were wonderful at sorting care/nursing home placements. That should be your way of getting the help he needs.
💐 I went through something similar with my Mum.

I am so sorry you’re going through this @Totallybannanas
I have no experience of this personally .. yet… but my friend’s mum was put in a home as my friend lives overseas and her mum has no property.
In my head, I am thinking that I will move one of my parents in with me when the time comes. I was wondering if this was something you’d considered?
I will be retired pretty much shortly - so obvs this will make it easier…

It does all sound a mess and pot luck and I really feel for your dad and for you xxx

CHC funding will only kick in when his needs require health professionals to meet them and can’t be me by non medically qualified carers. Even if the needs come from a medical illness and are all caused by that illness this applies eg dementia patients generally don’t get funded by CHC unless needs are complex even though all needs come from having dementia. However there is something called CHC fast-track funding. Given they have prescribed anticipatory meds I would be asking if they think he is in his last few months of life - usually 12 weeks (sorry but it is that brutal) If he is they should place him on fast-track funding which should cover any care or placement required. They usually have teams that arrange this care in health they are usually not in local authorities but in ICB’s. They hold contracts with the homes it won’t be advertised they will guide you as to where they can place people or where they can’t. Start with the GP ask if they have referred for CHC fast track, if they don’t help phone social services who will follow this up as if eligible for care they won’t want to be funding a package when health should be. If he is not eligible yet for CHC it will be down to social services in your local authority who will assess needs and for any financial contribution from the person towards that care. People with less savings, income property etc will likely be funded, sometimes fully sometimes they have to pay a contribution but local authorities have finance teams who explain all this to you. It may not be 24 hour care until he is assessed as needing it.

If you call the social service number to request the attendance allowance forms, the money can be backdated to the date of call.

We are only 5 weeks from the end of the school year. Would it be possible to have a meeting at work/school and ask for special leave? This could take you to the end of summer and give you some breathing space. Who know how his illness will progress and what next steps are but it may alleviate your current situation and anguish. I really hope you get this sorted soon, good luck.

The social care system is on its knees. An option for you is that you pay yourself for some extra carers to go in. Or is there a neighbour or friend that could act as a carer? My neighbour's children paid for their gardener to go in every day, mainly for company. There were also carers twice a day. Unfortunately with carers you don't have the luxury of picking a time to suit so your dad might end up waiting in bed to get up until mid morning and/or being put to bed ridiculously early.

I think you have a very difficult decision to make with regards to whether you give up work to care for your dad. Like you say, a job shouldn't take priority over a dying parent but are you in a position to be able to give up work? Do you have a family if your own?

This is the harsh reality: the system does not ‘care’ in the same way that a daughter does, and it is not funded to do so. It has obligations that it is legally obliged to meet, and that’s it. No social care service is going to do what you do, the way that you do it, because you really really care - and it doesn’t. The system does not have the resources to cajole and persuade him to eat or take his medication, or to endlessly explain things to him, or to reassure him etc.

I’m so sorry, OP, that you are in this situation, it’s a horrible choice to have to make and no straightforward answers.

Does he have a social worker? That would be your first step as they will need to support the CHC assessment. GP can refer to adult social care

also have a look at https://lottie.org/ put in his needs and assume CHC funded and it will give a list of care homes

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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