Hello. I hope you don't mind the intrusion but noone in real life understands the current dilemma.
My beloved husband is currently receiving end of life care in hospital following failed treatment for head and neck cancer.
He currently has a tracheostomy and is peg fed, and has been for the last seven months - pretty much since he was diagnosed, although the trachy is a more recent addition.
The hospital have been great in many ways, however the ward he is on has been exceptionally quiet due to covid. As he needs pain relief every two hours in addition to the syringe driver there are concerns that when the ward becomes busier this won't be feasible and could leave him in pain.
So the options are hospice or hospice at home.
Our natural instinct is to get him home, however I don't know whether my/our desire to spend as much time together as possible in the last few days/weeks is making us not look at this objectively. The cons of being at home:
- they have mentioned having a nurse present at all times, 24 hours a day. I'm not sure why, as even the nurses have said he doesn't require any nursing care beyond changing his trachy inner once or twice a day and pain relief. I can administer pain relief through his peg which has been confirmed by the ward nurses.
- the house is small - one useable bedroom (which is where I'd sleep), a lounge/diner and a kitchen which we could probably squeeze a table in. Where would a nurse go? I just can't see how it would be practical.
- he is at risk of a catastrophic bleed due to the location of the tumour. Aside from the devstation of losing him, this would be hugely distressing at home.
-can I cope? I think so. I have done so far. And actually with 24/7 nurses it'll be a damn sight less than I was doing before. Even with what I believe is the more usual package of district nurse/Marie curie I would have a lot more support.
So considering the hospice. It looks lovely, he would have his own room and some outside space and of course access to specialist nursing care and equipment 24/7. Cons:
- Visiting in the time of covid. Currently one hour prebooked visits, lateral flow test before visit. And of course, if cases go up again who knows what will happen. At the hospital I am able to come and go as I please and currently spend around eight hours a day with him and have been able to stay overnight. Only one visitor allowed per day and only two different visitors in total.
- Travel is approximately an hour each way via public transport. I don't think this is a huge issue but would feel better if he was closer.
- Even at the final stage, no overnight visits. If he's actively dying, I'm turfed out at 8pm when visiting ends. Although I'm not sure how strictly this is enforced in practice.
It would be lovely to have him home - to be able to sit and Potter about around him, watch telly without the pressure of being in 'visiting' mode.
He is very much still himself, sleeping a bit more, can't talk clearly due to the tumour but communicates with writing and an app. Still takes pleasure out of things.
They gave him days to weeks to live at the begining of February. At present he seems as well now as he did back then, but we did have a blip initially when his breathing chanced ad I got the phone call so very aware it could all change in a moment.
My husband initially was adamant about going home, but is now considering whether the hospice might be the better option (it's mostly the 24/7 nurse in the house that has changed his mind on that one.)
We are having a chat with the palliative team today and have a list of questions.
Can anyone think of anything I may not have considered?