Hospital discharge and coming home

I will try and be concise but our situation is complex

Husband been in hospital nearly 5 months but last week finally had op to repair previous surgery that went wrong.
His mobility was very Limited before and has been since a young man. He also has had a stroke and has end stage kidney failure.
OT from hospital has been to see home which is progress . There is uncertainty as to his future mobility as he can’t grip on one hand due to another injury that happened during lockdown and delayed and basically his tendons have snapped and another surgery could not repair them and he also is now recovering from wrist injury and femur injury so unlikely to be able to manage zimmer.
So for him to come home safely he will need an indoor wheelchair.

My question is about timescales. I’ve filled in all the finance forms and OT made referral to LA and letter received from LA acknowledged this. But they have a back log re someone coming out to take another look and presume decide what can be done here. But of course his future mobility is not known. We are in Wales and LA will fund some of the work . We will need wet room . But also an internal lift or wall knocked through.we have both worked since age of 15 and are lucky to have decent savings so will have to fund a lot of work.
OT said I need to wait for LA to come and visit but this could take weeks or months and my husband has a life limiting illness and he should be home ASAP. Can I contact builders and get their advice and go with this and start process. I’m concerned as waiting for building work to start takes such along time. How does it all work can , I’m just worried if I don’t start sorting this he will be in hospital so much longer.

OT also told me the big issue will be finding carers and he will need paid carers x 2 . There is a major shortage where we are. He has to go to dialysis 3 times a week .
So feel worried about how his coming home will develop. Hope this makes sense.
Asked for cares assessment but been told by LA that need to wait till he’s home !
Thank you for reading any advise would be welcome

Surely he can’t come home until the work is completed? Would it be better for him to have some Reablement care, or a temporary nursing home bed? It all sounds too much for you to manage even without the building work. We bought a cottage with only an outside bucket and board in a lean to! We have done lots of building work and the mess is truly awful. Plaster dust everywhere. You can’t care and deal with this too, I’m afraid. Has the OT drawn up any plans? Will the downstairs bathroom be built on?

Thanks for your reply.
He is currently in a rehab unit been there for 4 months.
The OT has been but next step is the local authority home adaptions department. They have a waiting list and backlog. Where we are we are talking many months possibly.
Just need to be patient.

Hi Ruth.

As much as I can understand how you feel, the work involved has to be right, and an OT is the best person to figure that out. Speaking as someone who has gone through two sets of major adaptations, the upheaval is considerable and I well remember the taste of brick and plaster dust getting into everything! If you’re going to go through that, you want to be sure it’s done right. Putting up with Spaghetti Bolognese alla Polvere di Mattone isn’t worth it if it’s done wrong (Spaghetti Bolognese alla Brick Dust - sounds better in Italian!)

Obviously the time factor is a worry, with your husband’s kidney issues. It must be massively frustrating, but you’re probably best to wait it out.

Charles your advice is so helpful, also made me chuckle ! yes I also remember past building work done and there were stressful moments. It does need to be done before he’s home he wouldn’t manage the noise dust etc.
Got council and builder coming later this week and grant agreed so all heading in right direction.
I need to be practical not emotional but he’s had so many months recently and over past 6 years in hospital .
Thanks for all the support

Please insist that you will only be able to accept your husband home when all the work is completed. My mother in law was in hospital for nearly 6 months, awaiting an adequate care package to be in place, but even when she came home, her ramps were not ready, so she was a prisoner for another 3 months until they caught up with the backlog. This was several years ago, so with the impact of Covid etc, I suspect it would be even worse now.

Its sad to be blocking a bed in hospital, but adult care and our NHS support services are sadly so “broken” its the only way to get things to happen :frowning: .

Thanks for your advise
The renal consultant has concerns that finding carers will be a challenge where we are as the situation is dire. The OT has same concerns
He can not come home until all work is completed. He is going to be in a wheelchair and has to be able to leave the home to go to dialysis.
I’m anxious of course as to how everything is going to be achieved . He has a life limiting condition and me and him don’t want him to languish in hospital or rehab unit.

On a positive note LA have now visited and are drawing up a schedule of work and I’ve found a builder so things on that front are progressing.