Is this our business? Or should we just walk away? WWYD?(52 Posts)
This is a bit of an update of an older thread.
The backstory: FIL is afraid of surgery. He needs a standard knee op. He's now backed of having this twice at the pre-op stage. He is a very controlling person, and part of the fear seems to be associated with this loss of control.
FIL walks literally bent at a 90 degree angle, grasping a stick in front of him. His spine is now deformed after years of doing this, and he's had one vertebra break under the strain already. I honestly haven't seen ANYONE else walk like this these days - it looks like a big spider. It is getting worse with every passing month.
He's struggling to clear any chest infection he has - he gets a cold and coughs for months and months. I suspect he can no longer properly ventilate parts of his lungs.
He has heart problems already (a stent has been fitted) and his inability to do much in the way of exercise is not going to be doing this any good.
He flat refuses to get a blue badge or a mobility scooter. Yet his walking is becoming slower and slower. It's all having a terrible impact on MIL who is fit and active and able to stride up hills with gay abandon, but who is now reduced to crawling alongside him.
He loves to drive, but I don't know how long he'll be able to do this with the knee problem. He has already been told he has to stop every couple of hours because of a DVT danger.
He is depressive and anxious, and declining mobility isn't helping this.
He refuses to engage in meaningful conversation about these issues, and clams up or changes the subject when this is raised.
So my question is: what should our reaction be? How much should we hassle him about his decision not to have this op?
I am very aware that it's his body, his decision. I would be horrified at the idea of anyone being forced into an operation when they weren't comfortable with it. On the other hand, his fears about the surgery really don't have any rational basis and we are genuinely concerned about the implications of his not having it for his quality of life long term.
I genuinely wouldn't mind walking away with an airy "On your head be it". DH is more concerned about his mother and wants to apply pressure.
Will the knee surgery make much difference given all the other physical limitations he seems to have? Or is that the reason why he's bent double?
Surely the biggest pressure to get surgery is the implications on his quality of life. You can give him the chance to talk about his fears and offer to come to appointments with him to support him but can't pressure him into doing what you think best.
He doesn't sound suitable for an anaesthetic anyway - has he passed a pre op?
I would write to his GP detailing observed issues I was concerned about, and ask them to assess him at home. He certainly sounds as though he has depression requiring treatment before anything else can be considered.
Even if he has the surgery it won't help his breathing, spinal deformity and depression
Do they have cash? Would he consider going private, or booking a private after-care room? If he got shown around someone nice to spend time afterwards and feel really looked after would that help at all?
Pinkie: He'd probably have it done under spinal if it's a TKR.
OP: has he said exactly what it is that's bothering him?
ask them to assess him at home
he's not housebound. GP would see him in surgery. please don't encourage him to expect a visit.
if he has capacity then he has the capacity to make bad decisions, but if I was his GP then I'd want to explore whether he is depressed.
unfortunately he is an adult and capable still of making his own decisions. its tough when you see how much it is impacting on his life. does he particularly value driving? if so you could say "well you will need to stop driving unless you get the op done"
would he try hypnotherapy?
if he is definitely depressed then I would be writing all this down and sending it to his gp.
I think there's very little you can do given his mood. I would write a detailed letter to the GP however as you will not be next of kin do not expect a detailed interaction. I'm a nurse consultant and take family concerns very seriously, from your post it sounds like he has multiple health issues and may well be getting to the stage that a knee op won't make a huge difference to his life (I'm making an assumption from your comments please don't take it as given) or have too much of a risk with anaesthetic. He sounds depressed and clearly how is is will be having an effect on your mil. I would want to address mood and immediate pain relief before specialist referral based on his other comorbidities. Good luck op other than contact GP I would aim to be as supportive as you can to them both it's a very difficult situation to be in.
I would leave it up to him. He's a grown man.
I would be pissed off with him repeatedly wasting NHS time as well.
wordsmith and bettys - yes, the knee is the reason he is bent double. All of the other problems stem from this. His back is deformed because he can't stand up straight because of the knee. Coughs last forever because he can't ventilate his lungs because he's bent over because of the knee. The one thing that isn't connected is the depression, which is a long term MH issue for him. Sorry, I should have been clearer. I think, because most people have a knee replacement at a MUCH earlier stage, you rarely see people in the kind of state he is in these days.
wolfie- I'm leaving DH to deal with speaking to him, but he clams up/refuses to discuss.
olaf - As far as we can make out, he's scared of dying on the operating table, and of being in pain afterwards. He read a report on the internet (!!) that said that some people have worse pain in the wake of the op. We have pointed out that there is no way that the NHS would do this routine operation thousands of times a year if it didn't help, but to no avail.
dusting - they could afford to go private, but his fear is of the surgery not the NHS so I don't think this would make any difference.
I think the idea of writing a letter to his GP is a good one. I absolutely appreciate the argument that, at the end of the day, it's his decision (even if it's a stupid decision in our eyes!)
My uncle is like this, and he's like a big spider when he walks - two sticks. He was recently persuaded into a mobility scooter; I think, though am not sure, that happene rtly because I have to been using one for two years and told him fabulous it was.
In his case, most of his reluctance stems from religious belief. It is God's Will; he has lessons to learn; he will suffer now cutting down penance he will recieve after death and thus move from Purgatory into Heaveny Bliss more quickly. All nonsense imo, but he's very sure. (The scooter doesn't count, not sure why.)
Getting into a mobility scooter is a big thing. You know you're never going to get out of it, so a big psychological step.
I understand your annoyance and frustration
But, like my mum, it's their body and their decision.
I take it he is still mentally classed as capable?
One day it will prob be taken out of their hands and they will be admitted as an emergency - with the increased mortality risk that goes with it 😞
As I have cubstantly told my mum, an elective op is always preferable to an emergency one but it falls on deaf ears...
anyfucker - don't even get me started on the waste of NHS time! At a time of so much stress as well. We are frustrated with him. The fact that it's happened twice, and he hasn't sought help inbetween for his nerves is irreponsible.
(In the background, I am also pissed off because he routinely tells anyone who doesn't agree with him that they're not being 'factual' and 'scientific'!! And yet he suddenly seems to be unable to muster his own rational side when it's something he happens to be scared about!!)
Could he talk to someone who had had the operation (successfully!) already - someone who could truthfully say what a positive difference it made to their life?
When I say 'could' it should probably be 'would he talk to...'!
Badders - yes, he's absolutely capable still. No question about that! And yes, I think you are absolutely right that we are headed for a scenario where their older age is crisis-ridden.
Slanky - that's interesting about the scooter. Can you elaborate so I can understand more? He absolutely refuses to use one, and I can't really understand it - surely it would help him live a fuller life and get around more? It's not like he's fooling anyone that he's about to beat Usain Bolt in the 100 metres with his two sticks, and he's quite happy to drive - so why the pride about not having a scooter? The thing is, he must know that this is a degenerative condition and that it's only going to get worse if he doesn't get the surgery, right? So the scooter is what the future holds if he doesn't have the op, isn't it?
noton - We've showed him testimony from people who say it has transformed their lives on the web. But he feels he'll be one of the tiny minority who ISN'T helped. There is no rational reason for this belief. He is VERY much a glass-half-empty person, though.
Have you spoken to his specialist? If he's been bent double for years and has serious spinal issues then I can't see how a knee op will sort all that.
For all you know he may have been told he's not a suitable candidate or that he can't drive after surgery.
He's an adult. It's his decision.
"FIL walks literally bent at a 90 degree angle, grasping a stick in front of him. His spine is now deformed after years of doing this, and he's had one vertebra break under the strain already."
What? That's not going to take pressure off his knee. I honestly fail to understand how/why he is doing this. (I used to work mobilising patients after hip/knee replacement). So he doesn't want the op - fine. But get him some elbow crutches and teach him how to use them properly (plenty of Youtube videos, e.g. www.youtube.com/watch?v=yJE9bkjSoS8).
Does he get any 'reward' from being infirm? People doing things for him, etc.?
Actually, he's right - there is a risk having the op. He has a heart condition you say so that can be affected by general. Also, some people have had knee surgery and it has caused additional problems for them.
However, his quality of life now is very poor and these risks need to be weighed up against the risks he is taking now not having the op. I should think this is the best way forward - getting a medical explanation of the pros and cons - the risks of having the op and the risks of not having the op - so he can make a more informed decision.
Another poster has suggested he might have a spinal rather than a general anasthetic - maybe see if he thinks this is an option? It might reduce the risk of heart problems during the op therefore sway the balance the other way for him.
I feel for you.
Whilst I am my mothers PoA and do a lot for her, I have made it perfectly clear I will not become her carer and tbh she doesn't want that either (I think we are both worried about a "misery" situation developing!! 😀)
I think you and your Dh need to have a frank discussion about what you are and are not prepared to do re caring responsibility for fil in the future and ask what his plans are re future care planning.
It's not an easy convo to have but ime once they deteriorate it can go from "independent living" to needing full time care scarily quickly 😞
Also, he may have some osteo issues if his back is bent over so much - he may not be giving you all the details or he may not be aware of another issue.
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