Oh, crap....

[davidgillon]

Writing family trauma stuff to wrap brain around it.

So, my sister rang late morning, which I half-missed being thoroughly asleep. I stumbled awake and managed to dial her back (half-panicking). Apparently she followed up on a conversation she and I had over the weekend by organising a meeting with dad's doctor, and the doctor told her that they don't feel dad is improving, that they don't feel he will improve, that the post-stroke delirium is stopping them from doing any meaningful rehab, and that because they're specifically a rehab unit they're therefore looking at moving him into a nursing home of some description, probably in about a fortnight. About the one good piece of news there is that if they do it, it will be fully funded. So my sister was then faced with telling my mother this (as apparently the doctor has been chickening out of the discussion for a week). Needless to say mam was upset, and my sister is so stressed her GP has signed her off for a fortnight.

There are some problems with their logic. They made this decision last week, yet dad showed several clear steps forward last week - first time he'd had physio multiple times, sitting by himself, standing with support etc. Equally he's not been having anything like the amount of therapy - speech or physio - he should have had, so of course he's not making as much progress as he should, and that's partly down to instructions from the doctors not to do physio in certain circumstances that the physios disagree with, all mixed in with a possible link between the delirium and how dehydrated he is that a lot of the medical staff appear to agree with, but the doctor doesn't. Equally some of the comments from the doctor don't appear to hold water, she says he's incapable of holding a conversation, but my sister mentioned a couple of short ones that he'd initiated in the last couple of days - and which the doctor of course hadn't seen. I suspect part of the problem is that they're almost certainly significantly undermanned and in crisis-management mode daily trying to get sufficient agency staff in, so detailed observations are being skimped on.

So in the best case we're going to have to argue with the managers of the unit to get them to back down on moving him out, at worst we/social services have to find him an acceptable nursing home (that my mother can get to even though she doesn't drive) sometime in the very near future. And of course there's finances to arrange, not so much for the short term but to ensure my parents finances aren't sucked dry in the longer term if the fully-funded care dries up at any point. At the very least I think we need to arrange for one of us to have power of attorney over the bits of the finances that are in dad's name (probably my sister for convenience, though likely with me doing the actual accounting - which I hate). And there's probably other stuff I haven't thought of...

I may well have to head back North sooner than I intended, and I really don't think the back-and-forth is good for me, I have a real problem if I can't establish a routine, and at the minute I'm not in any one place long enough. I was already worrying I was losing all the progress I'd made this year, and this may make it worse. And I'm not sure how well the rest of the family understand that.

Comments

[jesse_the_k]

This sounds really hard.

Is there a stroke-survivors group/trust which might be able to work with you you convince the docs if they're acting too quickly?

Best wishes.