Are we mad to think the family could provide end of life care to my dying father

[UbercornsGoggles]

Dad has terminal cancer, diagnosed only a fortnight ago. He's deteriorating rapidly in hospital and wants to go home to die.

Everything is set up for him at home but due, I assume, to Coronavirus the hospital haven't been able to put district nurse support in place, and this is for the foreseeable future.

We have been told that he has to leave the hospital, he may get a hospice bed but this is unlikely. Only option seems to be to bring him home and care for him as best we can from home. We'd have access to the rapid response district nurse provision, but this is already stretched.

Really don't know what to do - if we refuse to have him at home we are likely to be stopped from visiting soon so he will die alone, but in the care of health professionals. If we bring him home there are 3 of us who could provide care but none of us are medically trained. We think he has maybe a month to live.

Any advice? Please be blunt if you have experience (professional or personal) and you think bringing him home would be a bad idea.

I have personal experience.
Please bring him home

If he stays in hospital / goes into a hospice he will 100% die alone.
That's awful.

Please bring him home

We cared for my mil. Drs said afew weeks, she lived 2 years, but we coped, she was comfortable, we knew we could do right by her

We would never of forgiven ourselves if it was now, and we she died alone

Its hard, not going to lie.
But in your case, such a short space of time

I have no experience, but I would bring him home.

I have personal experience, as long as you have pain relief, preferably a syringe driver, you can do it. Contact local hospice they will help.

You can be given guidance on EoLC meds to ease his pain etc

Push to have him home, it can be done.

Without the support of Marie Curie nurses and day nurses this will be incredibly hard to do.
We had my father home but without that support we would have struggled. It is not so much the care but the emotional support. I would not change anything we did, my father went at home and it was as traumatic but an honour to be with him as he passed. Death is not peaceful unless on morphine. My experiance was like we were hurtling in a out of control train and then it becomes more peaceful as you hand him over to the next life. As i said i wouldnt change a thing but we were fully supported.

I have personal experience and I would say you will be very glad you took him home. During the last week you will get a lot of support from the district nurses. One thing I wish I had done was simply to move in for the last couple of weeks rather than going home (very locally) each evening.

Have him home. It will be hard. But better than imagining how he feels alone every day and night and wondering if you made the right call.

Xxx

Home. It's hard but a privilege to be able to do. Your lives will be on hold but its doable. Pain relief very important. Syringe driver if at all possible. Advice from Marie Curie / outreach hospice staff asap if they are in your area. Advice from them will make everything smoother. Thinking of you. Its a special time for all of you.

My Mumhad terminal cancer of pancreas. She was told she had about 3 months to live. I have 4 sisters and together we brought Mum home. We all moved in with Mum and cared for her in rotation shifts day and night. I won't lie to you it was hard. More emotionally hard than physically hard though. We all did different things for Mum. I read to her. One sister gave her foot massage. Two sisters at a time needed to turn her gently so she did not get bed sores. It brought my sisters and I closer together too. Because we knew we had done everything possible for Mum it made losing her a little easier. There were 5 of us and onky 3 of you but for 1 month you can do this. Don't be afraid to allow others to help you by shopping etc. In the end my Mum only lived 6 weeks. You will only ever have one Dad so cherish every minute you can spend with him and don't allow him to die with strangers. You will probably get a nurse come to you to give medication.

I gave my job up as a teacher to care for Mum. I got another job after she passed. I would do it again in a heartbeat.

Ubercorns you and your family have my sympathy

Heard a phrase on the radio today that sums up your situation - there's no right answer, just a least worst one.

End of Life care can be physically hard work - on top of which you have the emotional load of caring for your father. I think it's a big ask for 3 of you to provide 24 hr care for maybe a month. There will be some aspects of care which require 2 people, eg turning, changing the sheets etc, so it's not as if you can split the day into 3 x 8 hours shifts, and you will need time to sleep and care for your own families as well. I would seriously see if you can find additional people to help with day to day care - paying for it if you can afford it, asking other family members if not. Don't under-estimate the strain on yourselves.

I would also suggest making contact with local Macmillan / Marie Curie nurses to see what support they can offer. It's not just the washing, turning, feeding and being there for your father, but also symptom control - pain, nausea, itching and these teams are expert at being able to help. Make sure your GP knows your plans - from you, not just the hospital and ask what support they will be able to give
I'll be honest the only thing that says keep him at home is the fact you will not be able to visit. In normal times, with lots of nursing support, easy access to GP visits it's tough. But your father needs you around and you need to be there to. Keep pushing for that hospice bed.
Take care

Bring home but you should be able to avail of end of life care. My mum had a hospice nurse stay nights while we slept. We also had carers come in to change and clean her. They were a godsend. It will be tough but so worth it. Sorry that u are going through such a shit time x

Hi OP. I have personal experience. My sisters and I looked after my mum until she passed away. We spent a month in the hospital with her then took her home. We were not trained but she was our mum and we wanted to do it. We were all there when she passed away and I/we are so happy we were able to spend that time with her. It wasn't easy, but OP you won't regret it. Speak to the hospital about what support you need and bring him home.

Thanks everyone for your replies.

Only 2 of us would be physically able to turn dad and a big fear is that because we are not trained we could end up hurting him or ourselves.

Many of the replies seem to suggest that nursing support would be there when we need it, and given what is currently happening I'm really not sure we could count on that being the case. Yes, I think we would have access to a morphine syringe driver when it became necessary, but probably not a lot else.

For those who have experienced this, would you still do it if you were uncertain about nursing support being there if/when you needed it?

Hi OP. If you do decide to take your dad home get the hospital to show you how to turn your dad and to supply a glide sheet. This helped us enormously with my mum. Also make sure you arrange for a bed and commode etc to be set up in the home before you take him home. You should be entitled to the NHS continuing healthcare funding and this should be fast tracked by the hospital for you. This would entitle you to a package of care once you get home.

OP in families situation, yes, we would have still took mum home even if the nursing support wasn't there. I know the NHS is going through huge strains at the moment, but there should be a dedicated team who deal with this.

We done it with no support at all for a year!

Me and partner only, his mum was 35 stone.
We never once hurt her.
You can do this!

@kazzer thank you for adding a further message. We have bed and glide sheet at home ready. Macmillan support nurses in hospital have been very clear that no nursing support will be available if we bring him home - what people are usually entitled to receive just isn't available at the moment. Our choices are to do everything ourselves with access to rapid response (or emergency) support which, let's face it, isn't going to be rapid at present, or leave him in hospital/hospice to die alone when they go into lockdown.

It's very difficult to know what to do, and undoubtedly caring for him at home will be a massive strain. I have a young daughter now at home full time, a job which I would need to get leave from, a husband who is a great dad but may also crack under the strain of effectively being a single parent and trying to work from home for however long it takes. My sister has a job she'd have to leave and an imminent house move. Mum has some mobility issues and so would only be a partial help. But I worry I'd never be able to make peace with ourselves if dad dies alone having quite possibly received substandard care in his last weeks.

You can request an OT assessment from the hospital for moving him safely at home, I think McMillan can access this too.

You can have a specialist bed delivered from hospital with pressure mattress if required. Commode and other aids to help.

Also a temporary hoist might be an option when transfers become difficult.

Ask the nurses at the hospital to show you mouth care and give you supplies of what you need to keep him comfortable.

So sorry, this won't be easy. But as previous person said it's the least worse option. You would have done your very best to care for someone you love.

I cared for my mother at home but I did have the support of a daily visit from
the community palliative care nurse. I could also phone her or my mothers oncologist at any time.
We hired a hoist and bathroom aids which made a big difference. We also hired a nurse when I needed a break. My mothers friends also rallied and were wonderful.
Would there be volunteers in your community that could be with him to give you a break for a few hours etc.
Learning how to lift is not that difficult - you could get a physiotherapist to teach you or there is a lot on line, not the same I know.
Not being able to be physically together I think would be very sad and stressful for everyone.
What about seeing how you go with your father at home and if it becomes too difficult for you all he could be readmitted for palliative care.

bring him home.
you can do it.
i did.

Only do this is you have adequate access to pain relief and other end of life meds. Syringe drivers need to be topped up every 24 hours.

The rest you could manage but that is essential imo (I am a nurse).

Having had direct experience. My concern would be without a district nurse how would you get appropriate pain relief?

For my auntie they came out within the hour to support us if we called them. She was in a lot of pain. We would not have been able to manage this alone.

We had no support from nurses. We did it (my mum and I).
My dad had a peaceful death too (contrary to what a PP has said)

Home.

My step-Mum did it with my Dad. It wasn't easy but it was right for them.

I'd have done it if she couldn't and would do it now even without nursing support.