Three months on from that discharge, here's what I'd do differently

#1Lorna B.(Joined Feb 2026 · 8 posts)July 21, 2026, 7:40 pm

I posted here in a panic in April, three days before my mother came out of hospital, mostly about the tablets. Somebody messaged me last week in the same state and I found I had quite a lot to say, so I am putting it here instead of in a message where nobody else will see it.

Three months on. She is still with us, still in the spare room, and we have had one readmission and one week that I would rather not repeat. What I got right in April was almost entirely what people on this board told me to do, so I am not going to repeat that. Here is what I would do differently.

I treated the discharge as the finish line. It is the starting gun. Everything I thought I was sorting out on the Friday was actually the easy half, and the hard half was the fortnight after, when the ward had gone and nothing had replaced it.

I did not ask what happens next, only what happens now. I had the list, the numbers and the referrals, and I never asked anyone what the plan was for a month's time or what should trigger a rethink. So when she went off her food in May I had no idea whether that was a thing to ring about or a thing to watch, and I lost two days to that.

I did not write anything down for the first three weeks. I remembered it all, right up until the morning I was on the phone to somebody who asked when the district nurse had last been and I could not say. I keep a folder now. It is a cheap lever arch thing with a call log at the front and it has changed how those phone calls go, because I can say a date and a name instead of "a few weeks ago I think". Keeping a care file is more or less what I ended up building by trial and error.

I did not say out loud that I was the carer. Not to my own doctor, not to work, not on any form. Three months of doing it and I was on no list anywhere, which I have only just started fixing.

And the big one. When they asked whether I could manage, I said yes. Every time. With her sitting there, and with a nurse standing over me holding a clipboard, and I said yes because it was the only socially available answer in that room. If I could go back to one moment it would be that one. I would say "I can do the mornings and I cannot do the nights", out loud, and ask for it to be written down.

Anyone else got one? I would rather this thread ended up useful than tidy.

#2K. McAllister(Joined Nov 2025 · 11 posts)July 22, 2026, 8:15 am

Mine is short. I would have asked for the follow up call in writing rather than assuming somebody would ring. Nobody rang. I waited nine days before I chased it because I thought that was the process working slowly.

#3dee1972(Joined Apr 2025 · 24 posts)July 22, 2026, 1:07 pm

Good thread. I am going to disagree with one of yours though.

I do not think you got the "can you manage" thing wrong, exactly. I think the question is a trap and there is no good answer to it in that room. I said no, quite clearly, twice, and it made no difference at all to what happened, because saying no does not conjure a service into existence. What made a difference was six weeks later, in writing, with dates and a description of a specific night that had gone badly.

So my version of your last point would be: say it out loud on the day AND put it in writing afterwards, and expect the second one to be the one that works. The verbal no on the ward is for the record. It is not the lever.

The other thing I would add for anyone reading this before their own discharge day is that the readmission is not a sign you failed. Roughly one discharge in seven comes back within a month, and it is higher again for people in their late seventies and above. I spent a fortnight after ours convinced I had missed something. Some of them you catch faster than others. Almost none of them you prevent.

#4ron-at-home(Joined Aug 2025 · 17 posts)July 24, 2026, 9:33 am

Different country, same list. I would add two.

First, I would have found out who was actually responsible for what. It took me about four months to understand that the people coming to the house came from three separate organisations who did not talk to each other, and that "they will sort it out between them" was a story I had told myself. Nobody was coordinating anything. Once I knew that, I stopped waiting.

Second, and this is the one nobody says: I would have asked what the fallback was if I got ill. Not in a dramatic way. Just, if I go down with flu for a week in August, what happens. There was no answer to that question for the first year because nobody, including me, had ever asked it. That is a safety problem for him, not a comfort question for me, and putting it that way round is what finally got somebody to engage with it.

Lorna, three months in and writing this out for a stranger. You are doing better than you think you are.

#5Lorna B.(Joined Feb 2026 · 8 posts)July 28, 2026, 9:12 pm

Dee, you are right and I have been turning that over all week. The verbal no is for the record and the written one is the lever. That is a much more accurate way of putting it than mine.

Ron, the fallback question has gone straight on my list. I genuinely have no answer to it. My brother is four hours away and has a job, and that is the whole of the contingency plan as it currently stands, which is to say there is no contingency plan.

Have started reading through the first two weeks again, three months late, and it is a very different article when you have actually done it. In April I read it as a checklist. Now it reads as a warning.