Worried about unnecessary operation

An operation that could give your mother back bladder control has the potential to deliver significant quality of life improvements for both of them. I'm puzzled why you see this as "unnecessary" and just how much you've really thought this through from their point of view.

There's a lot of "I suppose that.." and "I think that.." in your posts. You think you may be in possession of more information than anyone else involved due to your Google-research, and you've got a lot of concerns in your mind. You think that you can't have a conversation with your dad about it.

Why don't you sit down with your dad and have an open conversation. Tell him your concerns. Ask him about the arrangements for the operation.

My post crossed with yours

he is getting v disturbed sleep, and I think he's trying to solve this problem

This was my Mum and Dad's situation. A couple of things to bear in mind -

drugs - is not as simple as giving the person with dementia a sleeping tablet - sedation often makes things worse

Night time waking is a classic sign of worsening dementia and is a clear trigger for care home admission. It's not a matter of tiring out your Mum during the day so she'll sleep better at night. The illness doesn't work like that.

Even if your Dad accepts carers coming in to help him, they come sporadically during the day and won't come in at night. Even if he pays for private carers, he will have to sleep in another room as to get full benefit from night time care input, he'll get woken up if sharing the room and bed with your Mum. My parents were so resistant on this - they'd shared a bed for 60 years and didn't want to give that up.

Oh gosh sorry I'm wittering on - what I'm basically trying to say is without a lot of outside help, you don't solve the problem of night time waking for people with dementia.

Try sending an email to the GP outlining your concerns. You can take your time to write and edit it to make sure you get your points and concerns across clearly without crying and blurting out a stream of consciousness (yep, been there). Even if they don't speak to you you've lodged another point of view to be considered. Possibly it will trigger a conversation between the doctors and your dad about what he thinks the outcome will be and it may turn out he has over the top expectations. My FIL was like this - "slight chance of improvement" would turn into "will definitely be much better" because it was what he wanted to hear.

I just don't know what to do!

I'm so sorry the thread is confusing - trust me, I get that and reading everyone's comments I think a lot of us understand your situation.

Dementia is a horrible illness, plain and simple. It is highly demanding to care for and the situation only gets worse over time. Marry that together with people who are used to being in control of their lives and is just a slow motion car crash waiting to happen. You can see it's going to happen and there's not a lot you can do about it. I suggested contacting SS as sometimes, just sometimes, elderly parents will take the advice from someone 'in authority' when they won't take it from their closest family. Sometimes they don't - been there twice on that one. And all you can do is twiddle at the edges of the deteriorating situation, knowing it will go massively pear-shaped at just the wrong time. I still recommend calling SS as it gets the person and carer on the SS's radar which is not a bad thing. If nothing else talking through the situation with an experienced social worker will help clarify your thoughts. You can also contact your parents' GP to voice your concerns about your Dad not coping well.

If your Dad has the expectation of you providing care for your Mum, that's your way in. Next appointment you insist on going with them to talk about 'aftercare' and whilst there you can ask to what extent this operation will 'cure' your Mum's incontinence, as I have a sneaking suspicion that the incontinence is due to the dementia and there's no operation that can cure that sadly.

Your Dad isn't totally off with the idea of taking your Mum out to meet people - but he needs to plug into dementia groups where there is an understanding of what your Mum is able to do. My Mum and Dad really enjoyed the local Alzheimer's Association singing groups - my Dad still goes as a volunteer even though my Mum is now in a care home. Your Dad won't be able to leave your Mum there, he will be expected to stay with her, but they are an incredible source of information and support. There are some day care centres for those with dementia - accessible through SS.

Carer, not cater.

Incontinence is horrible for both patient and cater and can lead to serious, ongoing problems such as UTIs and other infections.

Your dad is the person living with this hour by hour and it should be his decision, not yours. An assessment for the suitability of surgery will be carried out.

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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 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.