Cockroach Cafe - Autumn

AAAAAAAAAARRRRRGH!
A Saturday in A&E.

@EclipsingYou hit the nail on the head. We had similar conversations re falls alarms. They both have falls but Mum refuses to admit she does and we usually find out by accident. We’ve even got to the of Dad agreeing to falls alarms but cancelling at tge last moment because ‘it upsets Mum’ (three times so far!! Social worker came and did a needs assessment (they’ve had several) and when she asked what would happen if one of them fell tge answer was that they’re never apart (unfortunately (for my Dad) that’s true) and the other would help to pick the other up. She just accepted that even though you can see just by looking neither is physically capable. SW said they gave ‘reasonable’ responses to all tge possible risks/problems she identified so that was that.

Part of the problem is that these old folk can often spin a good yarn when questioned directly. The HCP believes them and doesn't see and hear them an hour later when the elderly person has forgotten it all and is back in denial.

We are in the exact same position as @Podgedodgeexcept my mother has refused the surgery outright for her severe prolapse (literally hanging down between her legs). It affects her mobility and causes extreme discomfort. We have had those conversations with the GP re capacity as she has the memory span of a gnat and seems incapable of linking the fact that refusing surgery for the prolapse means that she will be in daily discomfort and have very limited mobility. But in the moment she will say she understands that but the following day we’re back to square one with her telling everyone who expresses any sympathy that ‘they won’t do anything when you’re old’. I do correct her every time that it is her decision and she has refused treatment options and she doesn’t contradict me but then says she can’t have surgery because she has to look after Dad. Unfortunately at 92 he has to look after her (we have carers too thank goodness but that is thanks to Dad who has a bit more self awareness). Again if we point out that she is not able to look after Dad and if she had the surgery she would be in a better position to it just seems to completely go over her head. The bar for saying someone has no capacity is incredibly high and unfortunately a lot of EPs seem to ‘pull themselves together’ in front of professionals and just just revert back to their normal base line with family.

This is the question I keep raising (re lack of insight into consequences). But the law says we are entitled to make bad decisions and that, I think, is used to avoid labelling someone incapacitous.

If hodgepodge 's ER says. "I don't care, I don't want an operation, I'll manage, I can call the GP when I'm sore and hodgepodge will help me", I'd put money on that being accepted as evidence of capacity 😕

And tbh, no anaesthetist or surgeon is going to fight an unwilling patient onto the operating table unless it's truly life-threatening and they truly and obviously don't have capacity to refuse.

But @Podgedodge , whilst having sympathy for her predicament, is it starting to verge on lack of capacity? Lack of insight into the consequences of decisions? It is worth having a conversation with her GP?

Sympathies. That sounds so hard.

@JeffLebowski .
Thank you
You have expressed just how I feel so eloquently.

@Podgedodge the dilemma you're facing is palpable. I certainly haven't got any words of wisdom to help you, all I can say is that I know how you feel and I sympathise. It's awful.

I've been talking to a counsellor recently because I'm also facing this kind of situation and as much as my intellectual brain can appreciate my feelings about my own mother's demands are being primarily driven by Fear, Obligation and Guilt, the emotion-driven side of my brain doesn't make it any easier to put my own best interests first and allow me say "No, I'm not able to do that" when I really should say "No, I'm not able to do that."

What makes it so much worse is that while I've been in some very difficult and demanding situations in my life, for every one of them there was always the promise that as long as I work hard at it and make the right choices then things will get better. For me at least, I'm really struggling to fully appreciate that when it comes to my mother she simply isn't going to get better and there's sod all I can do to change that. She's old, she's got an extensive and ever-increasing list of things that are medically wrong with her, her quality of life is way lower than I'd want for myself, and sooner or later she's going to die.

This is the first time I'm faced with a situation where the primary source of angst and stress in my life is something that is inevitably going to get worse rather than holding out the promise of getting better. The only question is how quickly that's going to happen and how much I can cushion that eventual and inevitable end. I'm finding it very hard to reconcile the self-image I've got as someone who's capable, resilient and able to affect my life's course with the realisation that when it comes to my mother's health and eventual death, there's nothing I can really do. I know the counsellor I'm talking to is trying to point me in that direction but it's a struggle, it really is.

I totally get what you’re saying @bigdogpaws , but she doesn’t care. I’ve told her this date works and I am not going to be available for another but it doesn’t matter, because she’s not having the op now or ever.
Shes fine (today) the future will take care of itself and bugger the rest of us. I’ve told her if she doesn’t take this op, that she’s on her own, I don’t want to hear about it ever again and I won’t be there if she’s brought in for an emergency. Shes fine just says she doesn’t expect me to.
Im calling her bluff, and she’s out bluffing me because of course I’ll be there and she knows it. How could I not be?

@Podgedodge Could you use the fact that she can't change the op date until Monday, and take the weekend to persuade her that she really needs to take the date she's been offered. Perhaps invent an upcoming job change/new commitment etc that means you would be able to commit to helping her if she takes the current date but not if she delays it. A bit of a white lie to make her think something outside your control might mean that she has to do it without you there if she delays. You could even tell her she'd probably be kept in hospital for longer if you can't be there when she is discharged. Slightly underhand but it sounds like she's at risk of her health getting much worse if she doesn't get this dealt with as soon as she can.

And of course it’s all happening on a Friday afternoon so nothing can be anywhere near resolved till Monday.

Oh fellow roaches.
My MILs op date been given. She is refusing it.
It actually would work ok for me, I could get there in time, stay at least 48 hours, arrange carers to come in longer. Another date might not work so well. But no, she says no. And also give me more time, To do what? What’s going to change? This is not a surprise, she has had at least 2 months to think about this. Longer really, but at least that long when it should have been a reality.
I totally get she’s scared, of the op, of the pain of the recovery.
But the alternative (leaving a prolapse pessary in) could be so, so much worse and painful than a planned for, scheduled operation.
Im so, so frustrated.

The old man in the book reminded me of my late dad. I don't remember crying at a book since I read Black Beauty as a child but this had me absolutely blubbing. It's sad but lovely at the same time. With the experience of caring for an elderly parent you can see both sides even though it's written entirely from the old man's perspective.

My husband has bought me this book but I'm too scared to read it. It feels a bit too close to home at the moment.

It's set in Sweden but the theme is universal.

If anyone wants a read that helps understand an elderly person's perspective I recommend When The Cranes Fly South. Am 2/3 of the way through and tissue used is high. Written from an elderly man's perspective interspersed with notes left by carers and his son. You can feel his son's anxiety and care as his dad's care needs increase and the dad's fear. Just off to open a new box of tissues.

I spent some time in the 20teens working as a
Locum in GP and hospital services and from memory, I had to know how to use a use a total of 5 completely different medical record IT systems, plus the separate but integrated system for test results which did at least function across them all.

It's no wonder people fall through health care cracks when the IT is so disjointed. That doesn't have cracks, it has chasms.

I worked in IT for government and in the finance/insurance sector for the best part of 40 years and that was bad enough. Behind most major systems there’s a behemoth of a database dating back to the 80s or 90s and then a million add-ons in a plethora of different technologies that have been developed to fill various needs or regulatory changes over the years, usually on out of support tech that no one uses any more and no one knows how to support.
I imagine the NHS is worse as it’s so devolved.

@MittensTheKittens Investigation results were one thing that was unified across hospital and GP systems. So it can be done! But, at least when I was still working (I took early retirement quite a while back), that only included investigations across one single healthcare Trust.

I live on the border between two counties, and patients could choose to use hospital services in either county, but we could only access the results from the trust in the county where my surgery was. Similarly I felt all at sea on the occasions where I worked in the other county (all of 3 miles from my house!) as referral systems and ancillary services were quite different there.

I dread to think how it works, or doesn't, across borders within the UK.

@Eclipsing Having records spread across multiple systems is just asking for trouble.
If you have a blood test requested by your GP, but done at the hospital, because someone has decided that GPs should centralise blood tests this month where do they go? Hospital or GP records or both?

I was very confused when my address in my hospital records was still my parents, I'd moved out 15years previously.

That is a brilliant criminal mastermind!
Can we use their powers for good?

About 3 years ago there was a very professional gang going round raiding external ATMs in banks. Always picked ones they could park outside and in and out in minutes. They used cutting equipment stolen from a fire station. They never went to any police force more than once and the only police force where there wasn't a raid was the one where they'd stolen the kit so they'd covered most of the country before that connection was made. Once they'd done all the areas they stopped and, to my knowledge, they've never been caught. There's a good argument for a national police force.

NHS IT is definitely part of the problem. I don't know how many different IT systems are in use in NHS E&W, but different GP surgeries can use different systems, the OOH service may be using another system, allied HCPs such as physics may be using yet another; and primary care can't access hospital IT, whilst the hossie staff can't access the GP systems. Absolute crazy madness. On top of that, different people will have different levels of access for different parts of the system, which is all well and good if it prevents inappropriate people from seeing clinical records. But I recall more than one occasion when I had to refuse to see patients until I'd been granted access to vital parts of patient records.

And don't get me started on medications. Ok, I see you have ---- on the IT system with which I was most familiar, warnings would flash up about potential prescribing problems. But these were, more often than not, so banal that they'd drive you mad (WARNING! - patient is already on XXX! Well yes, and I need to increase the dose but now I've got to override this warning and spend time typing my justification for doing do!) You can well imagine that in a busy clinic, you learn to switch off the warnings, either metaphorically or physically. And if course so many people are on so many different meds, they have no idea what they are, and if the computer can't tell you (eg hospital can't access GP records, etc) then you don't know.

Right, rant over, sorry to digress! Ooh, that's taken me right back to the bad old days of major workplace frustrations!

So much of medicine doesnt work for the people it's performed on. This whether it's for the very old or the very young or women. No consideration of pre-existing considerations.

Heaven forfend that any HCP should check to see what other medication a patient is on before prescribing.

I have lost count of the number of times I have said to a HCP 'you know I'm on warfarin?' as they prescribe something new only to find that the new medication is contraindicated. At least I can advocate for myself.