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Elderly parents
Original poster

Worried about unnecessary operation

110 replies

badger2005 · 29/11/2022 06:35

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?

OP posts:
CactusPrickle · 29/11/2022 08:47

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

Original poster
badger2005 · 29/11/2022 08:40

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?

OP posts:
Knotaknitter · 29/11/2022 08:39

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?

RosesAndHellebores · 29/11/2022 07:37

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.

Original poster
badger2005 · 29/11/2022 07:36

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.

OP posts:
FatAgainItsLettuceTime · 29/11/2022 07:31

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.

Original poster
badger2005 · 29/11/2022 07:29

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.

OP posts:
RosesAndHellebores · 29/11/2022 07:12

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.

Original poster
badger2005 · 29/11/2022 06:49

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?

OP posts:
KangarooKenny · 29/11/2022 06:41

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.

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