No room at the inn (or hospital)

I know it's water under the bridge, but I feel I need to spell out an issue we had before my son died - it needs to get better and if I stay silent it won't. This incident was not the hospital admission when he died but the one before that.

His breathing had been laboured for a day or two and he'd spent the Saturday and Sunday on our hospitals 'Assessment Unit', coming home each night. We'd been told to bring him back in if he hadn't improved in the morning. He had actually got worse overnight, so Monday morning we took him back. But this was Monday and there was 'no room at the inn'. Despite still having a hospital 'tag' on, his notes being on the ward, a medication line still into the vein in his arm, and his breathing being very distressed - we were refused admission because they were full.

We had to make a scene, using the magic words 'vulnerable young adult' before they would do anything - the result being that he ended up, very inappropriately at that point, in the resuscitation bay of Accident and Emergency - because that's all they had with the right equipment. The doctors there were hamstrung in treating him as his notes and 'treatment plan' were still on the Assessment Unit.

We were eventually moved to a ward about 4 hours later and did get an apology from the matron (after involving PALS - now known as Customer Services). He did respond to treatment but it was over a week before we were discharged.

I'm fairly certain that had this almighty cock up not happened, we would not have been able so readily to use our own nursing team on the ward or stay with him ourselves all the time. We were very conscious we were being treated with kid gloves after this fiasco, and it did help - it shouldn't have needed to be that way.

There are other stories around this admission I may post later but this is just presented here as yet more evidence that hospital isn't a good place if you're disabled.

Nothing finishes

I'd no idea how much there was to do when you lose someone. We had an 'end of life plan' - which my son totally ignored as usual, and lots of things in place to cope with his disabilities/illnesses, but nothing for afterwards.

So now we're busy. Certificates, arrangements, letting people know, mountains of admin., collecting his clothes, talking to his care team (because they lost him too) etc. etc.. None of these are all that important in the grand scheme of things - except the people - but they give us a focus and little things remind us of incidents with him - and I usually lose the plot about then.

I'm fairly sure I'll carry on being involved with people with disabilities, particularly PMLD (Profound and Multiple Learning Disabilities), just not sure exactly how yet.

There may be an intermission here, but I will be back. I may have to alter my title - I'm not a carer now. And I won't insult those who still have that role by keeping an honourable title I'm not entitled to any more. However much I've done, I don't have to clean the poo or check the medicines any more - and they do. Respect the carers.

An ending

My son died on Friday.

It wasn't anybody's fault. He'd had enough pain and distress and chose his own time to go. We had three days at home before he had to go back into hospital - things were hard for us but this time they got it right for him. We stayed with him and were allowed to do the bulk of his care, his own nurses came in and were a massive help.

I don't know where this leaves me yet, and to be honest, it doesn't worry me. For now, all I'm interested in is getting him settled, sorting out his affairs and remembering him - not in that order. We've had some good times going through his photographs and talking about the things we did. And we've cried a lot.

He was a big part of our lives, still is and always will be.

Back in the real world

Sons health improved enough to get us discharged from hospital. He was more at risk in hospital because of other patient admissions with serious infectious conditions, so we got out rather earlier than I think the doctors would have liked. Still, they weren't doing anything we can't do at home, and at least he's in a more familiar and supportive environment (and my wife gets to sleep in a bed rather than a chair, and has the luxury of a shower) at home.

I often feel guilty about the weight of responsibility and sheer work and stress she gets through when he's ill. I try to do as much as I can, but the reality is she's better at it than me and certainly knows more, (she has a medical background and inevitably did more of his care when I was at work) so I tend to follow her instructions. He was ill enough this time for our daughter to travel back urgently - whatever she thinks, her support was very welcome and helped us a lot.

So, we're back home, though he's not well yet. And the next set of issues kick in - staff shortages (holidays and illness) mean we're missing nursing shifts and also don't know if the nurses will be allowed to work at our house until he's well enough to move - we may be back unsupported until he's well again. The iller he tends to be, the more problems this gives the support services - so the more we have to pick up at the hardest times. We will survive this - we just won't know how until afterwards.

I'm very conscious that there were a raft of what others will see as horror stories during our stay in hospital, and will spell them out once the dust has settled. For the moment, I'm just grateful we got through this admission with a son.

It's hard in hospital

Still in hospital. Original problem resolving - slowly. Secondary problems of disability spin off problems now to be dealt with. The critical ones are the medical ones, mainly drug side effects/undesirable impacts of necessary procedures. But a significant number involve the inability of hospitals to understand the impacts their organisational procedures have on disabled people and their carers - and there are lots, some more serious than others.

They range from the irritating - poorly organized car parks locking in nurses cars because no one is manning the barrier 'intercom' late at night - to the high risk - urgently needed epilepsy medication being delayed for 2 hours because of the administrative procedures required to sign it 'in' and 'out'.

Will probably elaborate further once he's out of hospital. Just now sleeping is my second highest priority.