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Been away for a long time and just wanted to say hi! - Page 2 - Carers UK Forum

Been away for a long time and just wanted to say hi!

Share information, support and advice on all aspects of caring.
It sound like what he 'needs' is a place in a nursing home! Somewhere that is not a hospital (NOT 'easy' places to be), but still has nurses constantly 'around' (so can do drips and so on), and 'on call' emergency doctors for resuss etc etc).

Not sure if they exist any more?? Worth asking???

Re the chaplain - well that sounds useless! I wonder if there is something like a 'Humanist minister' available - someone who accepts his atheism, but can still find comforting and uplifting things to say and recommend??

The danger with depression is that it does 'drag the body down with the mind'.....and that is not going to help his body fight the infection. Having a positive attitude towards healing is SO essential......

I do hope that if and as his body is 'getting a little better' now, that his mind, too, may be cheered by that upturn, and his depression start to 'lift away'.
That doesnt like respite to me! Respite for who? Much as you want him home, he and you have to feel safe and to know that he has all care he needs, nit just piecemeal or so you struggle and have too much responibilty..

Much as you love him, decide what is too much and put your foot down if you think it will be unsafe. Be firm.

Yes, remember to use the magic word 'safeguarding'!!! And 'unsafe discharge'!

I can remember my own husband with terminal cancer in end stage - I longed for him to be 'home' but I was also terrified that if he were to come home, and have a 'crisis' there was NO 'crash team' to summon with a press of the emergency bell!
That is my fear. Even though he seems to have turned a corner, he is still at significant risk of medical emergencies (for example he developed sepsis at one stage of his stay with a temp of 40.5!).

We spoke to his consultant yesterday and he seems hopeful, but isn't getting our hopes up too high, so to speak. There is a chance he could get out of hospital before Xmas, but it's highly contingent on getting the right level of care/treatment in place.
It does sound like, for the moment, hospital is still the safest place for him to be, alas.

And think, too, how stretched the paramedics will be over the festive season, so any 'crisis at home' will be harder to get swiftly attended to.

Sepsis is SO dangerous - thankfully, we all now seem to be so much more 'aware' of it - ie, it's been in the press so much, that hopefully doctors and hospitals are far more on the ball about the dangers, and the need for SWIFT treatment.
My husband's consultant is going to have a chat with us on Monday about possible discharge. He and his colleagues have been looking into whether it's possible and if it's safe right now. I'm going to voice my concerns etc then.
That sounds positive from a medical point of view, yay hubby's on the mend :D
But do remember consultant will only be looking at medical side of things. He may have no idea of realities of outside support and care. As a consultant he will be used to everyone saying yes and having things happen. We know reality is far different.
He is probably under pressure to release the bed, especially for Christmas as hospitals want as few in,patients as possible.

Maybe a trial home visit or 2 before full discharge?

I have spoken to the physio and discharge coordinator who have said that they might be able to put something in place where his bed is kept at the hospital for a few days to see if he can manage at home, but could get directly back into hospital if needs be. That sounds like an option to me.

They have put things in motion (hospital bed delivered along with an ETAC/re-turn gadget for him to do transfers and a commode; social worker has been round; and funding has been applied for for the IV team to come and do his antibiotics and also a team to change his vac dressing regularly). So far, I'm not too worried following a conversation about medical issues with his consultant. I have a follow-up phone call with his consultant later to clarify some matters - such as when the funding will come through for his nursing care and the safety of his discharge. And he is going to come round to see my husband tomorrow.

The social worker has spoken to me on the phone a couple of times and is concerned about me coping on my own with everything. Problem is, I don't know what would be appropriate to ask for care wise from the council considering I am always there and I know what I need to do. Any ideas from you guys? This is an issue for us financially as well tbh, as last time he was assessed the council said we could contribute about £170 a week to his care - which seems ridiculous to me considering we only live on his private pension and my carer's allowance (they don't count PIP apparently).

Ask for a copy of the form which shows how they arrive at this figure for his financial assessment.
Did the assessment involve someone coming to the house, seeing copies of bank statements, income, outgoings, etc. etc.?
If not, it wasn't done properly, ask for it to be done again.
It is VITAL with an assessment this size that you insist on a Continuing Healthcare Assessment, in which case ALL CARE WOULD BE FREE.
Hi Jess
Although you can do everything, make sure you ask, and get something put in place so you can have regular short and long breaks. They will be vital for your mental well being. You need time to escape for a while, to socialise, to see family, perhaps even to work. They should be supporting you towards returning to work.
Although you love hubby dearly, you do need to be out in the real world and most definitely not his sole carer 24/7/365 for years and years.

And yes, you must fight for CHC funding. None of his needs are 'social' , they are all medical