How to access care for elderly dad who lives alone and diagnosed with cancer

[Totallybannanas]

He is currently in hospital due to not being able to eat or drink during to stage 4 oesophageal cancer diagnosis. He is having a stent fitted and then will be allowed home. I am worried sick, at the moment he is mobile and fairly independent, but he looks fragile after his hospital stay and seems to be deteriorating because he can't eat. The stent will hopefully help with this. I'm worried about him coming home, as he is very anxious due to regurgitating and worried about choking especially at night. I am worried about him eating the right things, managing any pain. At the minute, we only have a telephone number for oncology and cancer nurse. I have taken time off work to visit and provide emotional support, as he is afraid of being alone but I can't be with him 24 hours a day. I plan on staying a few nights in an air bed to see how he goes, but ringing anyone for help out of hours is a nightmare. He is social housing and has less then 10k in the bank.

Contact social services for the above. And AA fast tracked to help pay for it. Now is his rainy day. Don’t let him turn anything away he might have to pay for due to cost and the assumption that you will do it all instead. Prepare yourself too, that the situation muddling along at home may not be sustainable for very long. Even with carers in and out, it will still leave long periods where he is alone.
Ex district nurse.

Thank you that's sounds a little ambit what we have been given. The only thing they don't seem to care too much about his emotional wellbeing,.I'm really struggling with this.

With my Grandad & my Mum, I made it clear before they left hospital that they’d absolutely need help arranging before they were sent home. I made it clear what I was able to do. They both ended up going to like an inbetween/respite community care/hospital type place where they were assessed. Then carers/OT etc were arranged. Good luck op, it’s tough. Just be firm & don’t back down.

Yeah, I had to stand my ground. We have had a OT assessment at home and a hospital bed delivered, carers are due to come in but my dad hates this. I think it is a 6 week rehab program home. I am still having to stay the night as he is fearful being on his own, I've gone from daughter to carer in 24 hours I've gave him some meds, creamed his legs and tucked him in. He's now sat dozing in the chair because he can't sleep. So I guess I won't either 😥

OP, goodness we are in extremely similar boats. My dad has had mouth cancer, stage 4, lives alone, social housing, now needs 24/7 care - we are further along the journey than you. I’d love to connect. Feel free to DM me if you want to chat online. It’s utterly awful - in my opinion one of the cruellest cancers (I know they all are, but H&N cancers like these leave you so very very changed), and there’s a lot to navigate. You’re not alone.

Thank you, I feel so alone and scared. I've had to stay here each night as he is so worried about choking, I'm exhausted as not sleeping and waking with every cough/noise. I have a carer coming in for 30 mins each morning starting tomorrow, but I feel so guilty. Since he came out I have slept her all night, fed him breakfast and lunch then gone home come back to do tea, then home and then back late evening. He is still mobile, independent but he is depending on me alot more as I know he is scared and terrified of this cancer. I'm wondering if he needs to be in a home or something but not sure where we stand with this or how to even access this.

Look at NHS Continuing Healthcare (CHC) and see if he is entitled to it

Be prepared to fight for it but do it anyway

If that fails, you can ring a local hospice and see what they advice would be to help you

I was just about to say, look at CHC funding for full time care - I’m in the process of fighting for this for dad as I believe him to be eligible. Best to get a referral from your hospital team, GP, or district nurse. Our assessment will be done by the district nurses next week.

the pathway we’ve taken looks like this:

surgeries/radiotherapy > home, supported three times a day by carer (initially council provided but stepped up to private as I’ve been able to help him financially)

Falls due to frailty (he’s lost all weight and all muscle tone) have landed him in hospital for weeks at a time, so care at home stepped up

Further falls/ deterioration led us to try two weeks at a care home to see if he’d be happy to move to one (we funded this again and were told by the care home that we needed 18 months of private funds if we wanted him to move permanantly. After that point you can apply for council funding which will cover much of the cost. The weekly fees are frightening.

If I were you I’d be contacting your district nursing team and being very firm about your situation and need for more support for your dad at home. Do you have a sympathetic GP? I don’t know what the pathway to a care home looks like through council, but I know there is funding available if you have less than £23K in savings - but best approach then know so they are aware of his needs and financial position. For us this is the adult social care team.

in the meantime, things that helped dad in the earlier days:

Pureed foods (either from a supplier or done in a nitribullet). Dad liked mash and cottage pies etc.

Fortisips to boost calories

Any pudding/ ice cream that he can manage - calories are king, don’t focus too much on nutrition.

Pill crusher for meds

Ultimately dad has been given a PEG feeding tube but we’ve tried to maintain his swallow function with the pudding treats he likes that are very smooth.

I feel for you OP I really do. My dad is just about to move home again following his respite stay at a care home and a further surgery, he has zero mobility and is non-verbal, doubly incontinent, and tube fed - it’s utterly awful but he keeps soldiering on. It’s a scary cancer as the effects are so life altering. Take all the support you can get- MacMillan etc, GP, district nurses. Be clear that he (and you) are struggling.

Take care of yourself as best you can.

OP I don’t really have much in the way of practical advice, but what I would say is please look after yourself in all of this. I know you want to be a good DD and support your DF, but it can’t be at the cost of your job or mental health. Of course your DF wants you to support him rather than have carers or be in a home, but you will burn out quickly with what you are doing. I would try and take a step back and do those things that push for more professional intervention and funding.