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Scared my husband may pass away - Page 4 - Carers UK Forum

Scared my husband may pass away

Share information, support and advice on all aspects of caring.
Dusty has reminded me, stress that it must be a SAFE DISCHARGE. Repeat these words to everyone in the hospital you speak to.
When my mum was in hospital for a long time, all the staff in the ward would ask mum every day, "do you know when you are going home?"
All mum wanted was to be well enough to go home, but sadly she was never well enough, and ended her days in a nursing home. For her, the deciding factor was that she didn't want to be sat in her own mess in a nappy at home.

You and your husband together must decide for yourselves what needs to be arranged before he is discharged, and what he needs to be able to do. Whilst the consultant is thankfully very concerned, the pressure for discharge before Christmas is huge.
I can imagine the pressure is immense on the staff to discharge this time of year!

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, so good. I have a 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.

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?

Have they approved NHS Continuing Healthcare for him?
If so, all the care he needs should be provided via the NHS, nothing to do with Social Services at all. Ask the Consultant to arrange an assessment for this, if he hasn't already.

I would suggest streamlining the house as much as you possibly can, so that there is the absolute minimum of work for you to do. Dishwasher and Tumble dryer especially. Think about every single little job you do in the house, then ask yourself
Can it be avoided altogether - i.e. doing away with the borders in the garden, using a tumble dryer to avoid pegging out, etc.
Can someone else do it? A cleaner to do the essentials. Think about having someone from a care agency who can help you more once her presence in the house is accepted, so that you can "pop out" knowing your OH will be OK with her around.
Also try to arrange some quiet "me" time, perhaps between 2 and 3pm? Time when you can read a book, have a nap, uninterrupted.
Hard to say what you need, but in case it helps, as well as what bowlingbun said:

I wanted to know who to call when something went wrong, especially in the middle of the night (I got a 24/7 hospital number and a Council night service for emergency carers in case of falls or an unexpected care need I could not cope with).

I needed cover so I could get to my own medical appointments.

I should have tried harder to use the daytime carer visits to get out of the house and walk round the block so I had both daylight and exercise every day.

I wish now, that I had tried harder to organise a sitting service so that I could go out to something (anything!) occasionally for myself.

Think longer term. If you don't get a break, you won't be able to carry on, no matter how much you want to. Ask now what respite will be available to you, even if you don't need it yet.

I needed my husband to accept that people would come in to do the jobs we used to do ourselves - I found he accepted this better if someone in the care team said it (the OT was a good ally.)

And what Social Services cannot give you: I needed sleep. I fear that you will lie awake listening, worrying ... Please sleep at every chance you get. Don't bother about catching up on jobs while your husband rests, just sleep.
Just in case it's needed ... CHC / NHS Continuing Healthcare.

Main thread :

https://www.carersuk.org/forum/support- ... inks-32532

By popular demand , now has two kitchen sinks !
It's obvious you won't know everything you need, until he is back home - no one can accurately forecast everything beforehand!

So I do hope you are allowed subsequent 'bites of the cherry' when it comes to stating what you need to enable your husband to be at home.

I guess your 'ultimate weapon' is simply to take him back to A&E and have him admitted again! That should get some reaction from them.

That said, as others here have reported in their time, your 'power is now' - ie, while he is still in hospital. Get as much as you can possibly think you'll need - and err on the side of asking for more, not less! - because now you have the leverage. Once he is home and off their hands it's going to be much harder to exert any pressure on them.
Hi Jess - following your thread and keeping fingers crossed that you and your husband will have a successful return home. I'm a carer at a distance, so don't know exactly what help you could ask for......but I would suggest that you ask for as much help as you can get, on the basis that if you really don't need you can always stop it, but if you don't ask for enough help it might be difficult to get more. Also, as others have said, you will need time for yourself, even if only to walk down the garden, or wrap Christmas presents, so grab everything on offer to start with and don't refuse anything on the grounds that you can do everything yourself.....you shouldn't have to! All the best :)
Jess, would it be possible for him to come home from hospital for the day, or a few hours, so that you have a better idea of what he would need when he comes home, and he could really consider if he is ready for discharge? Maybe with the Occupational Therapist from the hospital could then see him in his home environment? This has happened several times when my mum had been an inpatient and was about to come home.
Doesn't the OT *have* to check and approve the home situation before discharge can even be considered?
I would think that at some point, once the symptoms of the infection are minimized, the OT, social services should be offering a period of reablement care at no charge to you for up to six weeks. Have they mentioned that possibility to you?