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?

But yes countrygirl99 I do take your point, and I guess that my mum is less and less familiar with my house as time passes.

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.

Carer, not cater.

To reply to Knotaknitter - you are right that I said my dad loves my mum very much, and this is definitely true. I think he would always try to act in her best interests, but he is getting v disturbed sleep, and I think he's trying to solve this problem - probably so that he can go on looking after her. I'm just not sure whether this is the right decision or if he has all the information.
I don't know if the GP would talk to me or not. I have POA, but have never used it so far. I feel like maybe the GP should be willing to talk to me - why not? Not to disclose information, but to hear the concerns?
I don't know though - I haven't seen a GP in over a year at our practice so don't even know if it is still possible to meet face-to-face for a discussion when no-one is urgently in need of medical care.

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.

CactusPrickle I don't know if "something that may help with incontinence will improve both their lives", because it is something that may help with incontinence. My brief research suggests that some operations lead to UTIs or other problems - and if it is a GA that may be risky too. Of course if you could solve incontinence without any risk you would but I don't know if that's the situation. That's what I'm trying to find out.
I don't think I am very set on my ways of doing things - most people would say the opposite in real life? I've been helping around the edges but know that I have no power to influence any of the big decisions where my dad is concerned.
And this is my mum and I love her very much. I don't know why everyone is so sure that my dad has access to some information about what she wants that I don't - me and my mum were always very close, and she is old-fashioned enough that before alzheimers removed her inhibitions she would never have talked about incontinence with my dad.

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.

Thank you DPotter - I will be reading your reply again more slowly, but thank you for understanding how the thread is confusing. I suppose I was looking to find out the right thing to do, but I'm not sure why I didn't predict that there would be lots of different voices saying lots of different things!

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.

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.

Just adding in another perspective - they're probably of the generation where family look after their own, so outside help is like admitting that they're failing/not managing.

A family friend let her DF battle on caring for her DM - making poor decisions, neither of them living a happy life, until he literally sat in his chair one afternoon and died from a massive heart attack. Her DM has alzheimers, and is like a new woman from being in a care home, medicated properly and getting enough food/drink. It turned out that her DF was muddling medication and not giving her drinks so she didn't wet herself

Sometimes you have to step in and save the carer from themselves. And I know that's hard to hear.

"it seems that alzheimers causes incontinence maybe for reasons that are not just mechanically fixable by an operation on the bladder?"

This was my first thought on reading your post. It is possible there is a pre-existing (mechanically fixable) bladder issue, but if so surely it would have been fixed before this. Then again if a surgeon has agreed to operate, you would hope they are doing so in good faith.

If her incontinence is due to her Alzheimers, the issue is that her brain is not relaying the information that she needs to wee, and surgery on her bladder would be irrelevant. My mother has Alzheimers, she is now late stage and she became incontinent about the end of the mid-stage. It's likely your mother will also become faecally incontinent. Incontinence and night-time disturbance is often the stage at which people with dementia move to a care home, as it is far easier for a team of carers to deal with, than a single (often elderly) carer.

It might be worth speaking to Social Services, but as your dad won't have carers in the house, I wonder if he would accept their help? They cannot force him to do so unless there are safeguarding concerns.

Is it possible that both she and your dad, have been "sparing" you from the extent of the sheer physical and emotional misery/humiliation SHE feels from bladder incontinence?

Dementia doesn't spare her from the soreness, the whiff, the discomfort and misery of accidents, wet beds, broken nights etc.

There's so much else over which she's losing control and autonomy ; this is one thing that can improve quality of life for both of them . No wonder your dad wants to give her that comfort.

she is old-fashioned enough that before alzheimers removed her inhibitions she would never have talked about incontinence with my dad.

Maybe that was mutual?

Perhaps he is too oldfashioned to discuss the details of an intimate operation "down there" with their daughter. Let alone explain all the physical details of the discomforts of adult bladder incontinence.

I think it is unlikely that the NHS in its present state will be carrying out unnecessary operations. If you have POA , you should be able to discuss the operation and its benefits and potential downsides with the surgical team before giving consent. ( unless you share POA with your father, and he is preventing your involvement).

basically, I feel that if the medical team can explain the actual physical benefit of a proposed procedure, and can also discuss the risks, that’s is your decision made for you. If it will result in a better quality of life for your parents, it is the right thing to do.

I hope you find an acceptable explanation, and can set your heart at rest.

Your poor mum. I would too question why she is having an op for incontinence as any form of dementia will mean that eventually she will be incontinent due to the brain not "connecting" properly with the bladder and bowel. Why put her through all the stress of the op and recovery for something that may be a temporary fix.

I really think that those that are saying it's up to your dad don't actually know what dementia is like!

DogInATent I think a lot about things from their perspective!
I also don't understand why you say that "You think you may be in possession of more information than anyone else involved due to your Google-research". I don't. I'm just asking the question.
I'm asking whether this sort of operation at this point in the progression of alzheimers might normally be considered to be a good thing. And I'm getting mixed answers.
I could obviously just not do anything, not ask any questions, and let my dad make the decisions. That would obviously be easiest.
Asking my dad questions is not as easy as you might assume. Absolutely it is not the case that I can "sit down with my dad and have an open conversation" in the way that you might be imagining. He won't listen to my concerns. He would just be angry if I ask questions - unless I do it in the right sort of way. When I ask him about things, he might just say 'I'll decide' or something like that.
And please don't assume that's because of something I'm doing wrong necessarily. I think that after my mum, my brother and me are the people he loves most in the world. Other people aren't allowed these open conversations either. I heard someone from some sort of services phone my dad (when he was at my house) and ask to visit my mum, and my dad said no. He's not an easy person to just talk about mum's care with!

Sounds like my FIL was. Wouldn't discuss anything, could get really angry if you asked questions/suggested anything even when he said he was struggling.

Sadly increasing incontinence is part of the disease and pads (think absorbent pants) and Kylie sheets for the bed are a godsend. I work with people like your Mum and often they take oxybutynin to help. Maybe say to your Dad that there are loads of things that a care professional will be able to help them with, if he lets them in to give their advice his life will be easier and your Mum will be more comfortable.

Exactly saffy7 that is my worry. Will the operation work even temporarily? And how traumatic will it be? What will my mum think is happening? Once before we had to take her to A&E (after a fall) and even though I was there in the ambulance with her offering reassurance, she believed that she was being taken to prison.
Just to clarify, she is not in the early stages. She does not know, for example, where the toilet is in their house (just as an example). She cannot get to standing without someone helping her up.
And it's not at all obvious that my dad knows what he's doing. When he phoned me today, having read this thread I asked 'what about after care? Looking after the wound and so on' and he said that there wouldn't be any wound, and no need for any after care. That's possible I guess, but could also be wrong!

Thanks Allthegoodnamesarechosen, yes, if it was being done on the NHS and I could talk to the team, that would totally set my mind at rest.
I don't know if it is NHS or not. My dad talked before about getting this done privately, and I'm worried that some doctor will agree to it - though I recognise that maybe this is not at all likely and that realistically all doctors would have the patient's best interests at heart?
I don't know if I'll be able to talk to the NHS team. I don't know when the operation is. I only found out it was apparently happening because my dad told my brother that they couldn't visit because my mum would be recovering from it.
Just in case you're wondering, this isn't because I'm not involved in my parents' lives! I see them at least 3 times a week, and ask as much as I can without inciting annoyance from my dad and making him shut me down.

2bazookas my mum doesn't have the inhibitions she had when she was younger. A while back we had lots and lots of conversations about pads etc (which she wears) - I was trying to encourage her to change them without worrying about waste as she thought they were too good to throw away.
Now she wouldn't be capable of that conversation, but if she understood that a conversation was about her wee-ing she might just giggle. This is a world away from who she was before.
My dad is not embarrassed to talk about this - he talks about it a lot. It is the main problem that he sees. People ask about my mum's alzheimers (e.g. people at the memory cafe) and he will talk about her incontinence.
I don't think they are shielding me from knowing that it is a big deal! I think that my dad just thinks that I should listen and not have opposing views to him - which is largely what I do. It might sound like I'm criticising him, and I do have issues, but I also love him very, very much.

Sorry everyone I am writing so much in reply. It has been really helpful. I wish there was an easy answer though.

Your father is trying to provide the best care he can for his wife. Why should she suffer incontinence and all the increased risks that brings (falls, fractured hips, skin breakdown, etc) because she has delirium or is old? It’s about maintaining her level of independence and allowing them as a couple to cope better. Incontinence isn’t nice. It can often be treated.

Nobody does unnecessary operations. Every urology team will have weighed up the risks and benefits. Of your mother has any capacity at all, in her most lucid moments, she can consent otherwise it will be a clinical best interest decision to proceed. Nobody can insist on surgery if it isn’t in your mothers best interests and few would want to. Improving continence for several years is worth the surgery.

Very rarely is an elective general anaesthetic high risk. Most people who have poor outcomes are already in a poor physical condition, have numerous co-morbidities and have emergency surgery.

Thank you BuckarooBanzai. My dad has taken my mum to hospital to the urinary specialists, and I think that tablets and lifestyle suggestions (about when to drink) have been tried, but he says they haven't worked.