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 😭

This. I share the experience and the despair at the hope some posters are giving OP in ignorance here.

So sorry you're going through this. My Dad had oesophageal cancer and we managed to persuade him to move near to us for his final months. It wasn't easy to organise (he was renting for a bit) but it made a huge difference.

Sorry you and your dad are going through this.

Your dad should have a specialist cancer nurse (or possibly pallitive care nurse) assigned to him. I would get in touch with them and chat through your concerns on behalf of your dad. They can also (at least in my area) help with referrals to other support services. They would be able to talk you through what to expect and perhaps outline a suggested care plan.

He should also have access to a dietician as part of his medical team (again arranged by the specialist nurse) - they can support with meal plans/suggestions and prescriptions for supplement/nutrition drinks like Ensure/Fortisip. If he isn't able to eat/doesn't feel like eating these drinks provide all the necessary nutrients and calories.

It's great that he has already started counselling. Have you thought of getting any similar support for you? If it's not provided to next of kin via the hospital, then have a look to see if there is Maggies in your area. They are a brilliant charity and offer counselling support for family members.

Six weeks is such a short space of time, both you and your dad are probably still in shock - it's such a lot to process. Do make full use of the support services and his specialist cancer nurse - mine has been amazing (sadly, a post code lottery I'm sure)

I'm sure that you can organise with your dad to have his full permission to discuss things with his medical team - I did this when my mum had cancer in her early 80s. She was getting forgetful and was very overwhelmed and was very happy for me to speak on her behalf and discuss things with the team.

Don't quit your job (unless you really really want to). But it may be a good idea to get signed off for the rest of the school year so that you can deal with everything and look after yourself too.

Thank you everyone for your replies. It's a sad situation and I never realised how difficult it would be so early on. My dad is scared of dying alone, and I want to be able to to offer him that reassurance that he will have the care and support he needs but it obviously needs to be desperate for this to happen. I'm hoping the hospice nurse will help with supporting a nursing home placement. I will try and speak to them again.

Hospice nurses can't arrange care home placements. You need to speak to adult services at his council to get the ball rolling.

Yes of course that too. But if there is no joy on that front then it's surely got to be cheaper than giving up work.

He won't get CHC funding for carers at home until much later on. If he goes to a NH , they will do the CHC which will part fund his care. You don't need to do anything about the CHC funding yet.

Depends on the assessment. My mum has basic old style pension and attendance allowance. She was required to pay a proportion of that to social services for a basic level of care. I enquired as to how much it would cost if I took over the fees and was told that depending on my financial situation I could be asked to pay the remainder of the actual fees incurred by the council after mum’s contribution. For four visits per day this could have been as high as £60 an hour, so £180 per day after mums contribution.

Speak to Macmillan for advice. I’m so sorry

What do you mean Ensure?
Is that the brand name of the high energy drink things? I have no clue what the make was. I just know they existed.

Yep. They’re called Ensure and they can be prescribed by GP. Each one is a meal replacement and has all the vitamins and minerals/calories needed if the patient isn’t eating.

Yes, he has the shakes and I'm trying to encourage them as well as food.

The care team that are currently in place will assess if further more permanent care is needed at the moment in which case of it is they will carry on until that is in place or pull out if he doesn't need care services at the moment.

A CHC fast track is funded care for people who are showing signs of rapid deterioration ie that they are in the final stages of life.
This is a 24 hour turnover, reserved for people who are changing quickly and in the last 3 months of life so can be put in place very quickly when it is needed.

You don't need to look for a nursing home that accepts chc funding, if and when this needed they all do.

At the moment if he requires very little care, just drop ins for food and reassurance this would be means tested- if your dad can afford it he would be charged, if not maybe pay towards it, if not maybe funded. As soon as this changes the district nurses can apply for fast track funded care.

Hospice input could be valuable if symptoms are not controlled and there are palliative care needs that are not able to be met by the GP and district nurses. Just because there's a shortage of beds does not mean it's a definite no to an end of life admission, it just isn't definite.

I know its a worry but it sounds good that the just in case box is at home, if he is struggling with symptoms there is that as back up.

At this point in time it sounds like giving up work/ moving people around is not needed, just be as prepared as you can and respond as things happen.

I hope all goes as well.as possible at this difficult time OP.

I’ve done this twice with parent or close friend terminally ill with cancer. It’s a horrible situation to be in, for everyone concerned.

What I’ve learnt from that though is not to make spur of the moment decisions and assumptions. Both people lasted a lot longer than anyone thought possible - the first a matter of weeks, the second measured in months. Keeping up a high level of visiting and not working is sustainable for days, maybe for weeks, probably not for months. I’ve seen someone I work with whose parent is nearly a year on after being given a month to live.

As for the job. Can you afford to live if you aren’t working? Is it a job you could afford to leave and then get another similar one? Could you manage without working for months if necessary?

What I’ve found is that, once
they’ve gone, you have to keep on living. That becomes very very difficult if you can’t easily get back into work, have fallen into debt, fallen behind with mortgage/rent etc. What would your parent want for you?

In my experience hospice care is excellent, but it didn’t come until the very last days or weeks as there is such limited availability. What does come in the meantime is a care home place or carers at home, including night time care. But you do have to be really clear what you can, and can’t do.

OP, I'm sorry you are in such a difficult situation. The system is very complicated, and complicated further as people with terminal cancer can change quite quickly, one week you don't meet the criteria for CHC, the next you do etc. However it then seems like you've been given the wrong advice in the first place when really it's your situation has changed.

I work in this area and there is some confusing and mixed advice on this thread because people are talking about their own experiences but the needs and speed of deterioration really varies person by person.

I would reiterate what someone said above in that the system doesn't care, like you care (and it's not funded to, or set up to do so). The aim is to meet his needs around washing, dressing, meals and then in time pain relief, skin integrity etc but won't be "TLC", "hand holding", loving reassurance, being there hour by hour, day by day. It may be you want and would hope for someone to be with him all the time, to reassure and support him. However possibly he doesn't "need" that in that he isn't going to do something dangerous or be hurt etc without someone there.

From your description of him now, I doubt he would get fast track CHC, and I doubt he'd meet the criteria for a nursing home. That might change in a few weeks.

You may benefit from contacting social services, asking for a care needs assessment. It may also be worth contacting your local palliative care services, MacMillan, age uk, carers UK etc until you find someone who you feel is knowledge and can advise you and then ask them to talk you through things locally. Find a local agency, not national.

Why don't you have him live in your house and have the carers come over while you're working?

My dad took in his mum and she ended up dying in hospital but she was well cared for by mum and dad. My sil took in my partner's mum and she eventually died in her house.

I would but I don't have the room, my downstairs is open plan and he wouldn't be able to manage the steps. The bedrooms aren't particularly big either. I have thought about this 😕

My dad's mum lived downstairs we only had a 3 bedroom house. It was me, my brother and my parents. Do you have room for a single bed in the open plan living space?

OP can you confirm if your poor dad has been awarded Fast Track CHC already?

All your posts seem to suggest that he already has CHC but so many posters are telling you to apply for CHC or speak to social services and at this point whether he has FTCHC or not completely changes the advice.

No residential care homes advertise that they take CHC funding but I've never come across one that doesn't so don't worry about that side of things.

No sorry he hasn't been awarded it yet. He only has temporary care following hospital discharge.

Who are the 'they' you are speaking to that have suggested the two visits a day?

If I was the SW coming out to see you and you were both telling me he is terminally ill, exhausted and feels unsafe on his own and you were at breaking point and off sick from work to care for him I'd A) be organising emergency respite for you if that's what you both wanted and B) be on the phone the minute I left your house asking the district nurses to come and do a fast track CHC assessment.

I can’t believe some of these suggestions! Put a single bed in the open plan living space?! So where does the OP and her family go to cook meals, eat them, watch TV, wash up, do the laundry, have friends over whilst there’s a terminally ill person in the same space?
Where’s the privacy for that person, when the carers come to help them wash, hoist them out of bed if/when it gets to that stage and use a commode or change incontinence products?!

And speaking from experience, having a hospital bed in a room takes up a LOT of space, especially if you end up with hoists, chair raisers, commodes as well. Where does all the furniture that’s normally there go?!

My dad did it for his mum all my family have taken care of their parents. My dad's mum's bed was in the dining room that joined the kitchen it wasn't a big deal. I understand it's not for everyone my family did whatever kept their loved ones happy. My partner's mum had terminal cancer his sister still took her in. I worked in care and I know what it's like.

Her dad has to want to which is important as well.

It’s fine if they know what they’re getting into and know it might be longer than
they think.
I did it for my parent, in a separate dining room, so was possible to close the door and have some privacy/ not bother them with kitchen smells and noise. But I absolutely would not do it again having done it once.