Worried about unnecessary operation

[badger2005]

My mum has alzheimers' - I think she is in the late part of the middle stages. Just to give an idea: she doesn't always know her close family - I mean there are about 6 people in the world that she is usually able to place, and she sometimes gets us wrong. She doesn't know where she lives, etc etc.

My dad is her carer. He loves her very very much and vice versa, and I'm in awe of the job he is doing, but also he is making some weird decisions. One bone of contention is that he won't allow me to arrange any carers at all. I have tried everything (finding the perfect carer, having mum + carer at my house so no invasion of his space etc), but he just cancels things. It's basically his way or the high way - he is in charge of mum's care and my brother and I can only suggest things and usually that just annoys him. I see them about 3 times a week.

So my current issue is that I've just heard that my mum is having 'an operation for bladder weakness'. My mum is incontinent, and this is a major issue for my dad as it gets her and him up every night, and he mentioned before that her having some operation for this would be the one thing that he would actually find helpful. But what operation is she having?! I'm worried that this is not through the NHS, and that the NHS would not recommend an operation on someone with alzheimer's. I am trying to find out more - I don't know if I can get my dad to tell me and no doubt he'll be cross at my interference, but it just seems very worrying to me. Mum won't know what is happening, and if it is a GA they can go wrong. And there can be pain after operations.

So obviously I'll try to find out what's happening, but I'm just posting because I'm awake in the night worrying. Is there an operation like this that would be recommended for someone like my mum?

Thank you alexdgr8 - I'm very grateful to you and other posters who have flagged up that there are physical needs that might not be being met (e.g. with the risks associated with incontinence). Before this operation-topic came up, I had been worrying about mum's emotional needs, as my dad tends to do the practical things but not e.g. the music, talking, reading etc. But now I'm aware that the practical things might be more complex than either me or my dad realised.

Your mother is ill though, so you tell the receptionist you have LPA and the appointment is for her.

They're fantastic.
Also dementia uk.

A couple of thoughts re the medical side of the

People with dementia get all the same medical problems that people without dementia get but are at a massive disadvantage because either they can’t express themselves clearly or people just put it down to ‘the dementia’ and therefore not worth bothering about. While it isn’t always in a demented person’s best interest to have surgery, there are lots of operations we do for people with severe cognitive impairment that may improve their quality of life. The risk of proceeding with an operation has to be balanced against the risks of not proceeding for that individual, taking into account what they may have wanted for themselves if they still had capacity. It usually involves pretty robust multidisciplinary discussion and isn’t down to a single maverick surgeon to make a decision. Surgeons in the private are unlikely to make ‘bold’ decisions about operating on someone incredibly frail because there is usually such limited back-up if there are complications, and, for want of less blunt terms, they’re not going to want a demented ‘bed-blocker’ on the ward not making any money.

There is a risk of post-op cognitive deterioration with pretty much every operation (including in patients without dementia) - this isn’t as closely related to ‘the anaesthetic’ as people assume, but rather the whole package of perioperative disruption. However, chronic incontinence with skin break down, pain, UTIs etc also can cause cognitive deterioration, so it may well be that a quick procedure under GA that fixes a mechanical/physical problem could improve things longer term. Some procedures that can be done with just local in patients who are cognitively intact are done under GA on patients with dementia because it may be less stressful for them that way.

@parsniiips not sure if this is helpful to know or not, but it’s quite common for patients with dementia to deteriorate after a hip fracture - we almost expect it (even non-demented patients often take a step backwards after a fractured NOF), but the injury is so painful and so likely to result in death that we operate on almost everyone even if only to allow comfortable palliation. The 1year mortality after a hip fracture is still disappointingly high, partly reflecting that there’s often a significant medical problem underlying the fall that caused the fracture. Mortality’s around about 25% with surgery & 70% if surgery isn’t done, and not much has managed to improve that despite efforts.

An update: the operation was cancelled.

It was all a bit strange. My brother phoned up, and asked to talk to the consultant. The consultant was too busy to talk to him, but my brother talked to someone else involved (I think a person who works with people with disabilities, but I'm not sure) who was then trying to get a meeting for him with the consultant. But next we heard, my dad had heard from the hospital that the operation had been cancelled, and the hospital must have told him it was connected with my brother, because my dad knew that and was a bit annoyed about it. But my brother had not cancelled the operation - just asked if he could have a conversation about it! We don't really know what has happened, or if the operation is cancelled indefinitely or just postponed. Now obviously what we would now like is a meeting with the consultant and my dad, my brother and me (who all have LPAs). I don't know if we'll be able to get this or not.

In other news, I had a meeting (online) with an admiral care nurse. She was brilliant! She told me about the GEMS states classification, which helped me realise that my dad is actually a diamond himself, which is part of what is making this so hard. I still don't know where I would locate mum. I noticed (since I have known about this) that she has a her fine motor skills (she can e.g. handle a spoon) so not a ruby. The admiral care nurse also was very puzzled by the (then still planned) operation, and said that she could not see a good reason for this 'invasive' procedure as a treatment for incontinence in someone with alzheimers. She seemed quite concerned and suggested that I contact the incontinence nurse at our local hospital which I did, but they did not know about this planned operation.

NHS operations get cancelled all the time so it’s a moot point it was that or related to your brother’s call. I’d be surprised if anyone would have disclosed to your dad your brother’s as it would be against GDPR. Maybe he guessed.

Mirabai they definitely did tell my dad that it was related to my brother's call.

Odd that they disclosed it and odd that it was cancelled when DB only wanted a discussion.

I agree Mirabai - I think it is very odd.
After I replied to you, it occurred to me that as I am hearing this through other people - e.g. my dad told me that the consultant had cancelled it, and said that it was because my brother had told him to, and my brother told me that he was waiting to find out if he could talk to the consultant - then possibly there is a miscommunication between them and me? I don't know!
I'm sorry that this is all so messy and confusing. It is confusing for me, so must be confusing for you to read too.
At the moment I am relieved that the operation is cancelled (at least for now).
Btw I checked the LPA as you suggested, and it says 'jointly and severally'?

Jointly and severally means that only one of the attorneys needs to give permission/authorise/sign.
Is the operation that is being cancelled in the private system or NHS. Very unusual to cancel/postpone a private op. unless for health reasons