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?

I’d be asking Social Services to do an assessment, and I’d also be asking how she can consent in her situation. There are other ways of dealing with the incontinence before your DF consents on her behalf.

I can't get my dad to give me the details of who he is in contact with. It's not exactly like he's with-holding information, but more a mixture of thinking I'm too stupid to understand (I'm not "the one with mum 24-7" so can't understand), and just never having the details to hand.
Certainly some people are in contact with my parents - e.g. the memory clinic for example.
But do you mean that I should alert social services about this planned operation?

Why are you worried it isn't through the NHS? If it's being done privately it will probably be done swiftly, with dignity and by a consultant.

If I were very old and incontinent I'd want it dealt with if at all possible.

I had a bladder repair in my 40s due to a difficult birth. The NHS didn't want to know.

Ultimately it's your parents' choice and your df is likely to know what your dm wants.

That's reassuring RosesAndHellebores.
I don't actually think that my df knows what my mum wants - she has really quite advanced alzheimer's and would not be able to think this through. But reassuring to hear that an operation like this might be a reasonable thing for her to have.

There are a few different kinds of operations it could be www.nhs.uk/conditions/urinary-incontinence/surgery/

Generally urinary incontinence is first treated with things like medication, physio therapy, controlling fluid intake. These won't be suitable for your mum due to her Alzheimer's as she won't be able to participate in the routines needed.

Thank you FatAgainItsLettuceTime. Might an operation like this be appropriate for someone in my mum's position? Obviously I know that you cannot judge on the info you have, but I am wondering how to approach things - e.g. how much to push my dad into talking to me about it (he gets very irritated by my interference), whether to go 'over his head' and e.g. try to talk to the gp etc.

They may have spoken before she became unwell. DH and I are in our early 60s and have. I have made it very clear that I'd rather be dead than incontinent and in a care home due to dementia/alzheimers. I appreciate they are hard words to hear.

You don't get to go over his head and talk to the GP, the GP won't discuss anything with you and nor should they.

Your father's decisions may not be the ones you want to make but that doesn't make them weird. If he wants to be the sole carer you can't force care on them, you have no idea what promises they made to each other earlier in life. If you don't trust him to act in your mother's best interests then it's a safeguarding issue and you need to call in social services but that's not the same as him not telling you everything you want to know and falling into line with your plans.

You are clearly very worried but you've said that he loves her very much, do you really not trust his judgement?

It is possible RoseAndHellebores that my mum would have had the same preferences as you. What she actually always used to say to me was 'just put me in a nursing home, and make sure that it has a good view' (this is because she looked after her mum with alzheimers for many years, and did not want me to do the same. In fact what happened which she did not predict is that my dad would still be alive and doing most of the caring and making the decisions).
But the thing is that is obviously not the choice that is being made now. It's more between being incontinent and at home, or having an operation and then being at home - whether the operation will cure the incontinence or not is one of the things that I am wondering, as it seems that alzheimers causes incontinence maybe for reasons that are not just mechanically fixable by an operation on the bladder?

Surely something that may help with her incontinence is going to make both of their quality of lives better? If I was capable and DH had dementia, I'd want to care for him alone for as long as possible, you're fine to suggest help but forcing it is unfair if you Dad has made his choice and is physically capable. You seem very stuck on your way of doing things but you're not considering your dad's wishes - he's still a person with choices and views too

I can see where you're coming from. However it's no fun for your Dad if he's having to deal with helping her shower and change, extra bed changes' laundry etc, and it would give your Mum some of her dignity back.

I thought incontinence through dementia was because the brain no longer recognises the signals or the person forgets how to act on them. Unless there is another cause I'm not sure it's going to help.

I suggest you approach this from a different angle. You Mum is going to need aftercare at home which maybe over and above what your Dad can provide, so ask him what's being put in place for this - wound care, mobilisation, follow up, and can you help with organising it.

Sadly if your Mum is suffering from Alzheimer's there will come a time when incontinence is an issue, with or without surgery to correct any anatomical problems. Again could you suggest to your Dad that he seek help if he is finding this difficult (understandably so). A social Services assessment of both your Mum's needs and your Dad's needs as a carer would be the first step. Your Dad may well be reluctant to say the least, but he will need increasing levels of support with your Mum in the time to come.

My Dad as my Mum's carer took a big health decision on her behalf, which my sister and I tried to persuade him against, but he wouldn't hear any of our arguments and went ahead. And yes, it completely backfired and his desired outcome fell to the ground, and it caused my Mum pain and distress even through her dementia. He learnt a hard lesson at her expense.

Does your dad have power of attorney granted by your mum? Do you? I think I would make a call to social services personally as he might not actually be coping and might not have the impartiality to make appropriate decisions for her. Some red flags are popping up here like not accepting other help as he might not be getting the rest and relaxation time that he needs himself as a carer… and God forbid, but if he is elderly himself and the only one having anything to do with the care, what happens if HE collapses? Or even what about the impact on your mum if she isn’t used to any other care. Or if he doesn’t share info how can other people give your mum any kind of normality?
It sounds like she needs extra support, as does he- bladder issues aside. If he doesn’t have POA for her I don’t see how anyone can operate without her consent.

Oh and legally @badger2005 the decision made for treatment has to be in her best interests not your dads…

My thoughts exactly. It was certainly the case for my late DM with dementia. I would also be worried about the effect of a GA on the dementia.
OP - I echo the suggestion to check in with social services.

If she is having the procedure through the NHS there are strict consent guidelines. It sounds like your DM would be unable to consent for the procedure herself so the consultant would have to decide it was in her best interest. This is a consent form 4 if you want to look it up.

There may be a mechanical reason that is easily fixable and will greatly improve both your parents quality of life.

It is also not guaranteed that they would give your DM a GA. A spinal-sedation is an alternative.

I'm confused by the mixed messages I am getting from this thread.

On the one hand I am hearing that I am stuck in my own way of doing things, and should just trust that my dad knows best. I'm finding that quite hard to hear - I have been very responsive to my dad, and tried in all sorts of ways to help him, but really my role (as he sees it) is to look after mum when I come over and otherwise don't interfere, so I don't really. I should add that my mum and me have been extremely close, and I'm not at all sure that my dad has listened to her more attentively over the years.

On the other hand I'm hearing (which is what I suspected) that this operation might not even help, and that it may not be in her best interests, and so that I should - what? - call social services? I would do this if it was best, but I do really want to know what I should do.

Badger of course you will get mixed messages, because everyone is giving their own point of view (helpfully intended) but only you are the person with all of the experience of being in this unique situation. No-one can tell you what to do.
Reading the thread I agree with you that there are some concerns as to whether this op is the best thing for your mum and whether your dad is making the best decisions. But he is making decisions that he thinks are best, one of which is apparently shutting down and excluding you from the decision making process. Personally I think that's the bit you need to tackle first. Can you - and I'm not suggesting for a minute this is easy - sit him down in a quiet moment and tell him - TELL him - how unhappy you are that he's not letting you properly participate, and that things are not going (in terms of her illness) to get better and that he HAS TO let you take some responsibility and that you want to. And then don't let him wriggle off the hook. Tell him you want to accompany them both to her next appointment and establish yourself with her doctors as someone with rights to participate.

Just to clarify - as I think that some people picked on my saying that my dad was making 'weird' choices. I think that is the wrong word, and sorry about that, but also I maybe need to give more of the picture.
It's not like my dad is happily being mum's sole carer! Everytime he sees me he will tell me how hard it is, how much she is driving him crazy, how she keeps talking to him when he wants her to sit quietly, how he can't get enough sleep. And he has various ideas of his own as to how to solve it but none of these have worked. To give an example, he has tried taking mum to places where she can make friends with other elderly people, so he can have a break while she chats to them. But the other people don't stay long talking to mum as she can't remember what they said just a moment ago. And of course mum doesn't know why she's there or recognise anyone from the week before, and my dad stops taking her because he says she doesn't want to go. So dad is trying to solve his problems in his own way. It's not like he thinks there is no problem to solve.
If you want a more accurate idea of the dynamics, he is Indian, and I'm his daughter, and he runs the family and I tell him he's great (which he is!) and do what he says and take his advice. That's how it's always been. It's just that I no longer am sure that he is making rational decisions, and I've tried to talk to him about other things he can do but this just makes him cross, so I approach with a lot of care or don't broach the topic at all. The only thing that my dad wants from me is direct help - i.e. looking after mum myself - and I do this as much as I reasonably can given that I have a job and children. If he would allow me to hire a carer then mum could be at my place while I work and I'd be available if needed too, but he won't allow me to do this. Again - I haven't gone on about this, just suggested it, to someone who complains (understandably!!) everytime I see him about how hard it is and how he never gets a break.
I was just asking whether this was a situation where I needed to try harder to intervene, but I'm getting mixed messages - some people say 'butt out' and some say 'call social services'. I understand heldinadream - thank you for explaining this - that it's because everyone is putting their different opinions. I just don't know what to do!

I'm caring for my Dad at the moment (I'm also a former carer that worked with the elderly), and the issue of consent is raised constantly. Does your Dad have a medical power of attorney?

I'd be seriously concerned about anyone with alzheimers having a GA and hospital stay. You're very right to question this.

Your poor mum. Sounds like your dad is in denial about her dementia and how it's worsening. He's trying to 'make her better' rather than coming to terms with the fact that dementia doesn't improve. Also, in my experience a hospital stay, or anaeasthetic can be a trigger for a deterioration with the dementia. So she could potentially get a lot worse after the operation.

He might actually be right about your mum coming to your place. People with dementia often struggle with changes in environment, even with places they were previously familiar with.

It wouldn't happen in my NHS trust for sure.

Thank you all for your replies. I am reading them all.
I had a call from my dad today, because I had sent him a worried email. He says they are going for x-rays and tests today, and to our local NHS hospital, so I'm more hopeful that they are working with people who care. I was worried that some unscrupulous doctor outside the NHS would operate without it being in mum's best interests. Maybe I'm being paranoid.
Just to answer one question, countrygirl99 my mum does recognise my house. She used to come and help when the children were small and lots of the garden is/was planted by her! I have collected some of the things from their previous house (they've moved post-alzheimers) and she recognises these too - we always use the old teacups etc.
I suggested mum coming to mine because when I've asked my dad why he doesn't want a carer to come round, he says 'where would I go?' (their house is small). And I said the carer could take mum out, but he doesn't want that (apparently that is silly and there is no point to that). So I thought the carer being at mine with mum could be a solution. We are 10 mins drive away.