Terminal lung cancer - what to expect?

[RedorBlack]

Hi everyone

This has all happened so fast I am reeling a bit and was hoping to hear others experiences.

on Friday we had confirmation that my dad (89) stage 4 inoperable lung cancer and kidney disease. He is also diabetic. The day before we got the call he collapsed. He has been bed bound ever since.

We triggered palliative care immediately ans it has already progressed so fast. He is in a hospital bed at home but can’t sit or reposition himself, can barely talk, high levels of confusion alternating with clarity and panic.

He hasn’t eaten anything in a week and barely drinks. We currently have carers coming twice a day for personal care for 10 minutes and regional nurse every 1-2 days.

I am a single mum trying to juggle two ND kids and not leaving him alone and have been pulling favours left right and centre but I know that I can’t do this indefinitely. My brother helps too but is in a similar position.

I feel awful for saying this but I am already exhausted, he gets scared at night and has to hold my hand all night. I am trying to estimate timescales, but don’t know how long I can do this.

Not sure what I am asking for, part vent - part hand hold I think!

Hi OP. I work in bereavement. Have you considered a hospice? Is that an option?

He is desperately scared of leaving his home and going to a hospice so trying to avoid that, plus the palliative team have said there is such a demand for spaces in our area that they use them for short term only.

I think the hard thing is not having any idea of we are looking at hours days or weeks right now. I hate watching him go through this.

@RedorBlack I am so so sorry you all are going through this. Is there a medication your df can be prescribed by his gp? Does he have a palliative care team?

Thank you

He has morphine injections and we are hoping to get him Oramorph today. We do have a Palliative care team via Sue Ryder but resources are very limited to 2 short personal care visits a day, and regional nurse every other day (about 10 minutes each). So tactical care but didn’t feel anywhere near enough.

I am so sorry you are going through this.
I dont know if this will help or not, but you can google stages of dying, which can give you an idea of timescale. We did this when my mum was on end of life care in hospital and it was a strange comfort, having some idea instead of being in the dark.
My heart goes out to you. I couldn't cope with caring for my mum at home, although I wanted to.

Can you ask the doctor or palliative care nurses for sedation medication for when he gets anxious? I.believe that helped my.mum.

If you feel you cant do this any more, it's okay to say. Hospices are supposed to be far, far nicer than hospitals, with care and.medication immediately available when needed

Sending very much love to you.

Can he swallow oral tablets? You need to speak (maybe away from him) to his palliative care nurse or even the GP about his anxiety as he absolutely should be on something for this. If he cannot swallow then the just in case mediations should have in the home will have midazolam for anxiety and agitation. He shouldn’t be so scared and upset :(
If he is not eating now I would expect he has just a few weeks to live and will start to sleep more and more. Maybe you and your brother could get a rota? And I would expect his care package to increase to 3/4 visits per day soon.

If he's barely eating or drinking, he is quite near the end, though the timescales are hard to predict. I was told that if they are deteriorating month to month, they probably have months left. Getting worse by the week, probably weeks to short months left. Getting worse by the day, days to short weeks. But there are so many factors in play, probably no-one on here can advise you.

He should have a named cancer team nurse and they should be able to advise you. We had 24 hour telephone support and they were brilliant. They should be able to up the level of care through the local authority - he sounds like he should be on the 4 visits a day by now.

But If he is confused and totally dependent, he needs 24 hour care. It sounds like you could do that if it was for a few days but can't do it indefinitely. So you do need a plan b - even if it never actually happens.

That probably has to be residential care. One person with children cannot provide 24 hour care. So talk to the cancer team about what is possible. We got excellent care for about the last 3 months in a superb home through CHC funding. MIL didn't want to go but there came a point where she knew she wasn't coping.

For your dad, you could frame it as going in for a few days so they can do some observations. That might be less frightening for him. But the cancer nurse should be able to help with that too.

Obviously you are reeling and still trying to take it all in. But you need to know it's ok to say you can't do it all yourself. And do reach out and use the help that is there. Much love to you, it's so tough.

Don’t be scared about the hospice, my DH died from LC, he spent 4 weeks in the Hospice to try and get his pain under control, he was petrified about going in but actually it really helped him and me. He came out once he was stable. Push for more visits, we was on 4 x day plus DN daily and he wasn’t in pain. ((Hugs))

Hope you're OK, OP, I'm guessing it could all be moving quite quickly now. Hope you've got some support around you.

Hi everyone

Thank you all for your stories and support, it really helps. I had a long conversation with the palliative care team and they have dramatically increased the support (I think they realised I am already on my knees!)

We have secured funding for agency care so we now have 4 visits a day, and 4-5 night sits a week. They are also trying to work out a couple of days a week for the days following those we don’t have night cover for. This all feels a lot more manageable and my ex husband is also supporting more with the kids which is helpful.

They are even sorting me out some wellbeing support. It feels a very big change from where we were two days ago!

Plus we now have lorazepam which he calls happy pills so obviously he likes the effect of them!

I am so sorry for you and your poor dad and I am so glad you have got more support from palliative care.
Let your ex husband take over. Full time if necessary. Right now he needs to be a dad so you can be with your dad. It won't be indefinite.