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 😭

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

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.

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?

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.

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

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.

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

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.

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.

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.

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?

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.

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.

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.

Oh OP my heart is breaking for you…. You sound stress and at the end of your tether. I’m so sorry !

I know this is my future too as I’m an only child with a mother in early stage dementia.

I’m self employed and the main bread winner so if I don’t work, we’re fucked !!!

my mum refuses to admit that she’s at this stage, but more and more dependant on me, so I’m split between her, my partner and young son and my business, what do I put first ?

I want to hide and just ignore it, but not an option I know !

That's what I was going to suggest what assets has he got as well. I think op will stand a better chance if she pays 50% and social services pay 50%.

Been here with my dad it’s physically and emotionally exhausting no one seems to want to help he had dementia and lots of other medical conditions
get yourself an adult care social worker and contact care homes etc tell the social worker you can not look after your dad as they will just leave you to it I was left for 9months until I just broke down and told them I was gonna leave him at the local hospital (I wouldn’t have but needs must) people will leave you to it as unfortunately your just a number to them good luck it’s a tough journey take lots of pics write things down record his voice etc you will be grateful for that xx

I'm glad I'm not the only one. I can't watch the adverts or participate in the fundraising as I feel so bitter. I know that the nhs and these charities are underfunded so under resourced but as you said, it was also just the how dismissive they were too. The way my mum was treated in hospital in the last few days before she passed was shocking.

This is very good advice.

My experience of the system is it's utterly broken. Have heard terrible firsthand stories of people being left in faeces for days as carers don't turn up. Carers turning up and immediately going into the garden to vape and doing very little. There's no accountability, so if you're not going to be able to be there, a care home is better IMO or at least have a 'Dad cam' so you can see whether they're actually doing what they're supposed to.

I have a relative in a care home that doesn't accept CHC funding but ultimately it's social services job to find him a place. You DO need to get arsey with them and try and keep everything in writing or recorded - they tried very hard to avoid this with us. Sorry to say in my relative's case it was fairly clear social services would have been happy for them to die to avoid the paperwork and didn't do their job to the point this may well have happened had not family stepped in. They are paying for their own care, however so it's a bit different and we were able to just go ahead without SS.

My relative is in a fantastic care home with fantastic staff and is much happier than at home - you just need to fight to get him into one. This is I think a much better option for him and for you, you're less likely to burn out and you can visit often. You will be able to spend quality time with him rather than being totally exhausted and at breaking point. Doing 24/7 end of life care is exhausting (how long for?) and more so if it's a loved one - in a care home the staff are on shifts, they're not 'on' all day and all night.

I would absolutely not take on end of life care if it's just you, if you have family members who are reliable and who can take turns that might be a bit more possible, but IMO care homes are generally better for all involved. How does your Dad feel about that?

I am so so sorry

my grandmother went into a home, she was in the limbo between too high needs for home but not ill enough for hospital. this cost was met by the nhs as it was cheaper than hospital. Certainly in your case if he has no savings it will definitely be met.

your about to have the battle of your life with social services, you need to push and push and push for them to do something. Is he in a council property? That may buy you some leverage (although one departments budget won’t help another). You need to just keep on and on and on at them. Keep having his needs reassessed. If he has a hospital admission refuse to have him home as best you can.

One of my grandparents had dementia and I did some of the care for her. I cannot tell you the relief when she went into a home. I was able to just be a granddaughter again, not the carer.

I wish you the very best for this it’s hard and awful all round.

I've posted before about my experience with OC as I had it and my twin died in his 70's of it .
Everyone is different I know but my twin was mobile and able to self care ,wash ,toilet etc until a couple of weeks before he died in a hospice .
He did live with his wife who had more significant and limiting issues than him but he didn't need or get carers .
He did struggle to eat but as others have suggested used fortified drinks provided on prescription by the GP.
He did need emotional support and I wonder OP if this is also the priority for your father ?
I think a previous poster's suggestion of Alexa and being able to keep in close contact with that might help .Sadly nothing will be ideal.

When I worked at our local hospice you could make an appointment to speak to someone who knew all the contacts re nursing home care which our council would fund.

I would reach out to them, the council, Marie curie.

I've been told this type of cancer is normally months, but we don't have a exact diagnosis. I can only go on what he is feeling and right now he thinks he is dying. He was independent before hospital and hasn't really recovered. He also only got the diagnosis 6 weeks ago. We have St Lukes numbers and he is seeing their counsellor. She has basically, talked to him about possible nursing home placement and he seems to be adjusting to this. I don't know who, when or whether they will help support this and can help with this. I've not attended these meetings, as she is counselling him. This would give relief to me and dad and I can still support him, without the added pressures.

Sorry to hear of your situation. He should get funded care home. My friend was admitted to one in her final 5-6wks and it was fully funded. You’ll need to push for this.

It's all very tough and I'm so sorry you're going through this.

Obviously I don't know your living situation but if you have 2+ kids, could one of them possibly give up their room to share with their sibling so that your dad can stay in their room? Or could you and your DH sleep in a sofabed in the lounge while your dad stays with you? Obviously not ideal, but the living situation is likely temporary (sadly) and you could explain the benefits to your children if they are older.

Best place for his palliative outcomes will be with family and it's stressful having less space and having him there to look after, it might be less exhausting than travelling to him on weekends and fighting with his local council from a distance to arrange appropriate care.

Agree with others that whatever you decide, you definitely should not quit your job.