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 😭

What you also need is a power of attorney for health and welfare and a discussion of what happens when he is at the end of life stage. Does he want to be resuscitated? Does he want to be in a hospice, at home, in hospital etc?

https://www.resus.org.uk/respect/respect-patients-and-carers

My DM had a stroke in the end and I was able to uphold her wishes to remain at home for paliative care only, as I had POA and had discussed these matters with her.

Also apply for a blue badge and attendance allowance for him if you haven't already. It's usually pretty straightforward with terminal cancer.

Do speak to the charities about getting support for yourself if you need it. They may be able to help with the work situation too. 💐

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

Sorry to hear you’re in this situation, it sounds really hard. As people have said, you need to apply for continuing care although the criteria is strict. In my experience, once you get continuing care you can choose whatever care you like and it will be funded (eg carers coming in x number of times a day) and if you want to increase or change the care then you can. In my case it funded a relative having carers in three times a day but there was scope for funding overnights etc. So if your dad would like to stay at home, if this funding is secured then it probably could be achieved. My relative was privately funding the carers until the CHC was approved. I’m sure your dad’s Macmillan nurse (or equivalent) could help with the application and advice, do you have their details?

Again, sorry you’re in this situation. I know first hand how overwhelming it is and hope you have some support. Many hospices offer (anticipatory) grief counselling if that’s something you think you would benefit from.

Sorry OP my comment was to someone who seemed to be implying that he didn’t need more care if he had been assessed as only needing carers to pop in. I’m very sorry you are in this situation and have been in similar recently. In a different country so I can’t really advise on specifics. But I do know that you have to keep trying every avenue and keep badgering people to get help. I would ask for more time off work as others have suggested upthread. It’s all absolutely exhausting so you need the time to dedicate to getting the help. Don’t actually quit your job though- hopefully they will be understanding or your GP will sign you off.

I would ring around nursing homes both close to him and closer to you. Talk to them about your options. They will tell you what funding they think he needs and what is available given his diagnosis and condition state.

The problem with hospital discharge is that they have relied on you being there and washed their hands of him. You have to essentially do the same in order to get any support from the system. Go back to the hospital social worker or whoever is telling you the funding will not continue from the hospital (they will do a 6 week or so discharge to community - so that is why that funding is stopping). You need to tell them that you cannot continue with what you ate doing as you need to go back to work and that therefore they are risking a failed discharge as he will not cope with 2 x 10 min visits. Tell them you have looked at nursing homes and want him placed in one. They will do the assessments for funding but if he has no savings / doesn't own his house they will have to fund. CHC is a specific fund related to illness which is different to the standard 'old people's home funding' the latter being means tested - CHC is not.

You need to get your fighting hat on OP and seek support if you need it. It is not an easy ride...

You could take sick leave for this kind of thing ?

Hospice care is only available in the last few days/weeks of life, and same for Marie Curie. And even then the chances are slim of getting it. My DH had no chance of hospice care (though they provided a day a week of day care) and we only got a Marie Curie nursefor the last two nights because someone else died earlier than expected.

You really need to phone the Macmillan or Age UK helpline and get them to take you through exactly how you get nursing home care for him. And take copious notes.

Does your dad not have the number for his oncology specialist nurse? Every cancer patient should have one and they're the first port of call for anyone caring for them.

It seems as though you're just sitting here overthinking and panicking instead of going straight to adult social care or his oncology unit support and getting factual help. The discharge team are not the people to help you. They have different objectives.

Can u ring st David’s nurses as my dad had same as your dad and sadly passed 2 weeks ago but they were brilliant . I wish u well xx

OP sending love at this terrible time.

Can you have a meeting with your school to work out a strategy? Could you take an unpaid leave of absence? As a TA I imagine you are not particularly highly paid but good TAs are highly sought after… would it be an option to quit, claim a carers allowance for a while and then you can get another job?

Well if you are looking at giving up your job you could probably employ a private carer/comapanion (or a few of them) but even if you lived with him you couldn't be there 24/7. It doesn't seem like he has deteriorated enough to secure funding for a nursing home bed. If he cannot prepare meds and food you need to get social workers involved and look at increasing his at home care visits. You will need to pay something towards these though pending a financial assessment.

Is their Hospice at Home locally?

First of all, I’m sorry for your dad’s diagnosis- I know this must be a difficult time. Hospice is usually available when pain etc unmanageable at home or your dad is actively dying towards the very end of his illness. I’m assuming by that point your dad will have carers in the morning and evening. District nurses would likely be visiting at least once a day by then for possibly syringe driver medication or stat doses of pain relief. Is there any friends of your dad or other family who could sit with him when you are in work to take the burden off?

Have you spoken to social services?

So sorry you and your father are going through all this.
Have you considered contacting your MP? Though a different area, a relative contacted theirs regarding a housing situation and their MP was surprisingly helpful. Wishing you both the best, what a sad situation when someone in your father's situation is basically left alone to manage (if you weren't there).

I’m so sorry. It’s shocking how people are cared for when dying in this country. My mum died of a brain tumour last year. She moved in with me and we had a hospital bed downstairs in the lounge. She died with all her children around and her grandchildren playing in the next room. It was so tough and the most stressful time in my life, and then the saddest. But I’m so proud to have looked after her just as she did me when I was a baby. Cancer is cruel. We had carers in twice a day near the end and she spend a week in a hospice so I could sort her room but there was absolutely no way she was going to die in a hospice or care home. And she was never left alone even in hospice as my siblings slept with her. she was scared.
Is your dad able to move in with you? This time is tough but doing the bast you can will hold you through the dark moments.
side note: say all the things you can now while he is still aware 🙏🏼 so much love to you.

I agree, my mum had CHC, at a care home, as there were no hospice places available. It's fully funded for 6 weeks, but sadly, my mum only ended up needing it for 5 days😥. It should have been assessed prior to your dad's discharge from hospital, and if it hasn't been, maybe try the palliative care nurses for guidance, or the district nurse. I hope you get him what he needs so that you can at least be sure he is getting proper care and supervision as he needs it.

I think from what you have said it is unlikely dad will meet the criteria for CHC funding However if he has no property or savings he will be funded for a care home by SS. Ring social services and say you need an urgent care act assesment for dad as he is self neglecting and is high risk of falls .Sadly this can take weeks to arrange depending what area you are With mum we arranged emergency respite in a care home and social worker did the assesment at the home Thankfully they agreed mum needed care

Sorry to hear about your DF OP.

Instead of hot meals that need to be prepared, he could ask GP for high calorie juices such as Altrajuice - my DF was on 4 of these a day as he wouldn't eat. These are nutritionally complete but 4 juices would give him 1200 calories.

Or, he could buy in decent microwaveable meals from say Cook - they do home delivery.

Sorry to hear of everything you're going through OP. It's shit. I hope you get some time to look after yourself as well. Writing to your MP will bolster your chances of anything happening. That's what my mum had to do when my dad was dying and none of the systems were working. It's so piss poor it has to get to that stage though.

If he is deteriorating rapidly you could ask the district nurses to come out and complete a CHC fast track referral for NHS funding which would enable him to receive more input then what you are getting now/funding for a nursing home placement.

It has to be evident that he has a rapidly deteriorating condition, towards his last days of life and his GSF (gold standard framework) status updated. Make sure he has just in case medications and a DNAR.

The district nurses should support with this.

Hospice nurses, GPn district nurses, social worker - all of these people can help you apply for the funding and/or assess his need to get you funding.

I sympathise, its a chaotic time.

Ask your GP to make up a weekly dosset box which will contain all his pills divided up by the time of day he has to take them, the carers can then make sure he takes his tablets. If he has to take tablets say 4 times a day but only 2 carer visits, ask GP whether his medication can be adjusted to align with timing of carer visits - my dad's GP did this for him.

You then need to work out how and who will collect the dosset box....

I have to say, from recent personal experience, you are not unreasonable to be concerned OP. My MIL recently died from advanced cancer and the care was very poor. Eventually she got carers in twice a day but we had to fight every step of the way, and they were barely there long enough to change her colostomy most times. The care was terribly disjointed with health care professionals and social care contradicting each other and we barely ever saw the same people twice, so we spend vast amounts of time on the phone chasing up things that one person had said would happen but the next one knew nothing about. Even getting pain relief prescribed was an uphill battle. The only option was for each of her children/children in law to take time off work in rotation and move in with her. We did eventually get her approved for continuing care but she died shortly afterwards and before a hospice bed became available. Macmillan and Marie Curie were no help either, just sent a load of leaflets, some of which did contain useful information, but we got no practical support. The family was more or less left to cope with it all ourselves. Maybe it is better in other areas, I certainly hope so, and I hope you are able to get more support than we did, but I'm afraid you might need to be prepared for a fight. Knowing what you're entitled to is one thing, but getting it can be another matter I'm afraid. Most of the people we met seemed well meaning. I'm sure their failure to follow through on what they said they'd do was mostly down to over work, not because they didn't care, but that's cold comfort when you are on the end of it and trying to care for a dying loved one.

I have a friend who had oesophageal cancer, one of the lucky ones diagnosed early and so far doing well a couple of years down the line. They had help from OPA charity.

https://opa.org.uk

Might be worth contacting them to see if they can signpost you to help. So sorry for the situation you are in, heart breaking.

Yes in theory. My mum was very organised with her diary etc when she was approaching death. Keeping a brave face from her bed because that's what she always did.

District nurses told me she didn't qualify as she was coping fine.

We put her into private nursing home and they said they'd apply for that fast track. Anyway she lasted 2 weeks and she died. Still didn't get any funding