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 😭

Putting a hospital bed in the downstairs living room is completely normal and what most people at this stage opt for.
It enables the person to have some semblance of normal life around them, tv, chatter, coming and goings, when they no longer can get up and down stairs.
Most families do not see a commode or moving furniture our of the way such a problem at this stage.

I am so sorry. I was in a similar position late last year, my mum was given a terminal diagnosis, told she shouldn’t be alone and then discharged from hospital with the promises of carers. Six weeks later we had one visit a day for 15 minutes. It is an appalling system, and I imagine you’re very scared as well as dealing with a terrible situation emotionally.

My work were great and allowed me to take sick leave, followed by time off after my mum died. Your hospice should be able to provide you with a money assessment - your dad will be entitled to a number of benefits because of his diagnosis and if you were on unpaid leave you could be entitled to something.

Retrospectively I feel proud that I was able to care for my mum. Although it’s still recent and painful to think about that time, there were also moments of real happiness and love.

OP, I'm a district nurse and I literally support in situations like this all the time. It's really difficult to give specific advice as all services are ran differently in different areas. For example lots of posters saying contact Marie Curie but they literally don't have any service provision within the area I work in.

Contact your Dad's District nursing team. They will be able to complete the FT referral if suitable for him to then access paid for care up to four times a day. FT can also be used to fund nursing homes too. Our county's continuing healthcare dept literally have a list of approved care homes that they will fund so we advise families to go and have a look round them early on before it hits a crisis if that's what they and the patient want.

There absolutely are gaps in service and that is frustrating I know. But please don't panic, ring the district nursing team and let them know your Dad is deteriorating and you are worried about him when you're not there and you need to discuss places of care. As a DN I sort all of this, and advanced care planning. People feel so much better when all the options have been discussed and they're fully aware of what is out there.

@EmotionalBlackmail I agree with you and Op putting a bed into an open plan living space would be a nightmare for everyone.

Even simple things like the Dad wanting to sleep but being disturbed by the washing machine or being disturbed by dinner getting cooked.
If he's struggling to swallow struggling to eat but bombarded with cooking smells. That's just not going to be pleasant.

Then take into account privacy for him etc

OP sounds very stressed herself don't think it's a case of just leaving her dad to a few drop in visits each day do you

I agree she sounds stressed, op is reducing hours and option, summer isn't that far away which will give you a break, then see where you and he are at before schools start back

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.
this ^

Thank you, yeah I have been stressed, it's been 6 weeks of very intense emotions. First he was taken to hospital with symptoms, lots of scans, then admission to hospital and further scans and diagnosis followed by further news it was terminal. Another admission to hospital and 2 stone weight loss, us fearing the worst as he looked absolutely awful. Then bringing him home, a scared, anxious and malnourished broken man who never recovered from his hospital stay. Then everything stops for a bit and it feels like you are on your own.

I didn't even realise anticipatory grief was a thing and then all the practicalities and care side has added to my stress and grief. I can't disconnect to it, I'm in amongst it. I feel like I'm absorbing alot of dads fears and anxiety too. Just to add very true about trying to live in the moment and not worry too much about the future. I guess it's the unknown and uncertainty. I just feel like I need to pause and breath, and I haven't been able to do that.

Just a big hug. This is the most difficult part, IME, and grieving absolutely does begin now. Trying to navigate practical stuff which is complex and difficult as well as processing the realisation that your life has already changed irreversibly, as well as trying to regulate yourself and then also support your DF through this massive upheaval and facing his loss of health, and agency it's all really hard. You will also feel on unsteady ground with things shifting beneath you at unpredictable rates: nothing happens for ages and then things change really quickly and profoundly sometimes every four hours. I found it helped me to learn a bit more about the process of dying there are some good resources out there -- as it helped reduced my fear. For me, realising that death would be a release for him and better than where he was, allowed me to focus on doing what we could do make his death a good one, and as comfortable and pain free as we could; at one point there was a question of force feeding my dad. Deciding not to do that was much kinder to him and no doubt hastened the timing of his death, but really why wouldn't we? The manner of his going was kinder and less distressing as a result. One of the PP who suggested getting in touch with your district nursing team and working through end of life plans was a good shout: when you are ready to do that you will feel much better.

Has he got a social worker? I cant see it in your posts? If not then request one asap... Its often done as part of reablement but every area is slightly different..
They would then look to a care home placement... although with you there they will assume your ok being there unlesd you refuse go to his council website and start the process anyway..some have forms others phone numbers...

I found the feelings I had before Dad died were far harder to cope with than his actual death in many ways. I had counselling via the hospice and it was a lifeline (and I'm so not into talking about my feelings).

You need to speak a Social Worker who can get an assessment of his needs and get more care in place if appropriate. If he’s able to safely mobilise and he’s capacitous he might be deemed safe to be left for periods of time. Presumably he’s alone overnight at the moment if you have children? Don’t hand your notice in. Get more sick notes if necessary.

They will also advise / action CHC Fasttrack if he’s not actually seeing the DNs at the moment.

I was in this situation recently. I’m an only child so it was all on me. Also live on my own so all household bills on me too. I didn’t give up work. I did what I could shopping wise and taking to appointments ect but my mum was given carers which I believe started out with a couple of visits a week and then gradually increased as her situation got worse until finally she was on three visits a day from carers and two weekly visits from nurses. In the last few months she was admitted to hospital and then to a nursing home. She had no money and rented her home so no money to pay for any care.