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 wonder if the doctors are suggesting an op or your dad is asking for one in desperation?

It's what FIL was like for MIL - if only they would give this therapy/ provide that equipment my life would be easier but when DH went to appointments with them it was clear that the doctors had already explained why what he was asking for wasn't suitable/wouldn't work. But he would still go on about it to other people. And he would ignore anything he was told about potential side effects ts or aftercare because it wasn't what he wanted to hear.

Could your father be misunderstanding that your mother is being offered a catheter?

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

Dp's dad was like this - aggressively refusing care on behalf of DP's Mum and yet not managing himself. In the end it was taken out of his hands - DP's Mum fell, fractured her hip and the hospital refused to allow her home as SS knew he would refuse post discharge support. She went to a lovely care home.

All I can suggest Badger is that you contact your SS dept and talk to someone there about your concerns. Then you will sadly have to gird your loins and grit your teeth and wait for the car crash to actually happen.

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!

It is possible. ( I had urinary stress incontinence from a prolapse, totally fixed by (GA) surgery per vagina. No wound, no post op pain).

On another tack; have you considered asking any local residential care homes if they offer outpatient day care for dementia? I mean the sort where your mum would go for a day, have a nice lunch , maybe get her hair done or have a bath, and Dad collect her later. Respite break for him.

Wonder if she’s just having a cystoscopy if it’s something without a wound? It’s very routine urology list stuff and would exclude/help diagnose/possibly allow treatment of any physical problem contributing to incontinence. A urologist probably wouldn’t be doing any sort of prolapse repair or whatnot - that would more likely be gynae/urogynae.

Does he have PoA for health and welfare, do you and do you have any siblings? This is very important.

My father has Alzheimer’s and my aunt had it and she was also doubly incontinent.

I would not put anyone with Alzheimer’s through an operation.

I’m not sure why your DM’s incontinence is waking DF during the night? My aunt had mega incontinence pants for the night that kept everything in to be changed in the morning. If DM is leaking it’s worth changing the brand because some are much more effective than others, and worth getting separate beds with a waterproof sheet so it can be cleaned easily.

I would be as concerned as you are that your father is not making rational decisions.

But if you don’t have PoA and he does, the only thing you can do is request an assessment.

Long answer, sorry.

Haven't RTFT but one issue here is whether your father is your mother's Attorney, as in there being a registered Last Power of Attorney naming him, that was made before she lost capacity (this bit is important but can be hard to discern if made in the early stages post-diagnosis). Because if he is her Attorney he CAN make medical decisions for her. So go and look up LPAs ASAP and find out whether there is one and whether she ticked the additional optional box about life-or-death decisions (for the future although could come into play post-op).

Your concerns do sound valid, especially if it isn't an NHS op. That doesn't mean you are right but that being concerned, with the info you have, is valid. So if you are genuinely concerned about her wellbeing, whether it's about this or anything else, you always have the right to contact Social Services, maybe to have a chat about the situation initially. You could also talk to a solicitor about your options if an LPA does exist and if one doesn't, as there are further channels to go down with welfare concerns, depending.

I do think that booking care in for her when you don't necessarily have the legal right to do that, and against her main carer's wishes, and therefore not taking full account of what she or her carer would most benefit from. Speaking with personal knowledge, having carers in who don't know the patient, aren't always more than basically trained, and often a rotating roster of them, can be more trouble than it is worth and sometimes harms that patient. Plus having people coming into the marital home isn't everyone's cup of tea. If he's well and he's coping, maybe him doing it all is, for now, the best thing.

I understand you are concerned for your Mum though, that is only natural and it is good you are looking out for her, just go about it via the right channels in the right ways.

*would most benefit from, isn't the right way to go about things at all.

Could your father be misunderstanding that your mother is being offered a catheter?

I did wonder this. She will need catheter care if so, which either he could learn to do some of, but most likely she'll need regular visits from the District Nurses, for things such as change, flush, deal with blockages. It IS really important that he is allowing appropriate HCPs to come and assess and treat her, so that is one reason you can take things further, if you think he's denying her appropriate care. However, some assessments and offers of help are properly optional, so don't jump to conclusions. You need to tread carefully as he could make it hard for you to access your mother if he digs his heels in and that wouldn't help her in the long run.

LadyMarmaladeAtkins Thank you - yes you are right that I need to tread carefully. He is a very kind man and wouldn't deny me access to my mother for sure, but if he's feeling annoyed with me then we won't be able to talk about things.

He would not deny access to a nurse or anyone coming to do something practical. He has denied access to someone coming round to talk about things (I'm not sure who this person is - but could have been from social services or mental health services - he was on the phone to them), on the grounds that there's no point in just talking.

LadyMarmaladeAtkins oh and on the LPAs. So me and my brother have this. I don't know if my dad does too - will try to find out.
I get that a rota of carers might not work, but I found a small company where they would send the same carer for a few hours a week, and they met with my parents and found a carer. She was lovely and my mum and her seemed to get on great. I thought this would be a way for my dad to get a break - and he went along with it for a few weeks but then just cancelled the arrangement.
When I go round it seems there are lots of things that mum enjoys, but she needs someone to do them with her - e.g. looking at a book (a picture book usually) or a simple jigsaw, or listening to some music. My dad has told me that he doesn't want to do these things, so he rarely does (just if she is distressed he might try something like this). He thinks she should be able to do them by herself, but she can't. If you sit next to her and open the book then she'll start to look at the pictures and even read out the words.
So I thought it would be good to have a carer/companion once a week or more to do these things with mum - like I do when I'm there but there is a limit to how much I can be there. And it wouldn't have to be in their own home which my dad does not want - I've suggested if they like it could happen in my home, which my mum is familiar with. My dad is very happy to bring mum to my home and would like to do so more, but to fit in work I would need to hire a carer and then they could come round every afternoon if they liked.
But I am hearing what you are saying - this is not the best way to do things. It really is up to them/my dad and not me. I have been straining after this arrangement for a while, trying to suggest it gently, trying to talk to my dad, trying to work out what is going on in his head, etc etc. It hasn't worked. I'm hearing that I just need to drop it and let my dad do things his own way. Even if he is complaining a lot, then I shouldn't suggest a solution. I should only intervene if I think there is e.g. a safeguarding issue. This is actually good to hear I think... it will take me a while to absorb it.
One thing that makes me feel resistant is that I feel like in the last, say, 20/25 years (basically since I've been an adult), my mum has talked to me a lot, sharing her feelings etc. I don't feel like my mum and dad are a couple with a perfect understanding of each other. The dynamic was as much me and mum talking about everything in the kitchen, if you know what I mean? So I don't feel now like I should just leave them to do things their own way, but rather like that would be leaving them to do things dad's own way. I know dad will be being kind, but I don't know if he will be interpreting mum's voice right if you know what I mean.

Mirabai yes I also don't understand the night wakings. My mum has pads and disposable pants and waterproof sheets etc, but my dad says that she would just leak through, or she might maybe take them off etc. I wonder whether they are using the best sort. They have a commode in the bedroom that my mum can use, but she struggles to get up (though they have handles etc).

Greybeardy could be! It's confusing, because my dad turned down my brother's invite on the grounds that my mum will have had an operation a day or so before so won't be able to go on a long car journey (it would be about 40 mins). This was the first time I heard that there was an operation booked in. (I had heard him talk before about how this would be helpful, but I hadn't thought that the hospital would do it - and now I'm just a bit confused as to where and when it is happening). So that made me think there would be repercussions from the operation, but he has since said that there would be no need for aftercare.

2bazookas thank you for this suggestion.
There is a day care place near us, and I suggested that. My dad was quite keen and my mum has gone there for about 8 days in total. But she hasn't been for a few weeks and I don't think she'll go again my dad has decided. I'm not quite sure why - a mixture of things have been said about it.

DPotter does sound a bit similar - sorry to hear that you have also been through a difficult process.
My dad would never refuse medical care for my mum - a nurse wanting to dress a wound he would 100% get. He is only refusing I think some kind of social care-type visits, on the grounds that "talking is no use".
On the lovely care home point, my brother and dad are both very much of the view that a care home is a last resort. My dad says that my mum will not go to a care home until 'she doesn't know where she is'. In a sense she already doesn't - she certainly doesn't e.g. know her address, and even when in her home she might ask 'why are we in this place?'. But I think what my dad means is that mum can only go into a care home when she is completely oblivious to her surroundings.
I feel like maybe care homes are not quite how they are imagining. I tried to tell my brother that in a way it would be good for my parents if my dad could get a good night's sleep, and then go and see mum at a care home in the day - and could take her out every day if he wanted. but my brother says that this is not how care homes work and that I have no idea how bad they are. I've visited two and his description doesn't fit with what I've seen. But anyway, both would reject the idea of a care home for a long while yet I think.

countrygirl99 I don't think the doctors were the ones suggesting an operation -but I can't be sure. I will see my parents today so will hopefully be able to ask about what happened yesterday at the hospital.

So I know I've written loads on this thread, and it seems to have turned into some sort of diary. I'm so grateful for your advice and I am absorbing it all. I have got some mixed messages, so will need to think it all through.
I need to get some work done so will leave the thread for now. Thank you again!

I thought the same. Unless the cause of the incontinence is physical I can't see what good this will do. Does she have existing bladder issues op?

My mum had dementia, but died before she got to the incontinent stage.

Not just dignity, she’s also in danger of skin breakdown unless the incontinence is managed really well.

Sorry, that wasn’t a particularly helpful comment in the context of where the thread is now

I know you won’t be able to answer this if you don’t know the procedure but how do they think they will do it? Surely they won’t suggest a general anaesthetic for an elderly woman with advanced dementia but otherwise how would they do the procedure? If she thought she was being taken to prison in an ambulance it’s highly unlikely (almost a definite no!) that she will lie still while they do it even under local.

I’m a nurse who worked on the wards and have looked after so many dementia/Alzheimer’s patients. Even getting some to lie still enough for a catheter would take about 4 nurses(distraction/passing things) and you had to be super fast- it would have been impossible to do a delicate procedure.

It is so hard, your dad is probably seeing this as the magic answer to solving the incontinence and then he will be able to cope again. But she will get worse and worse inevitably - it’s why they call it the long goodbye. He is ageing too and change does get harder as you get older, he probably can’t imagine carers and care homes and being alone in the house. Keeping her with him is the least change and he clings to it.

Care homes can seem grim to us because we wouldn’t want to be sat in a chair watching tv or in the day room playing simple games with the staff. But for someone with dementia who forgets a minute later they are not. They are somewhere safe and warm, with round the clock carers to help with pad changing and toiletting, someone keeping an eye and preventing falls. (Obviously you do get some failing care homes that you see in the press but there are many who are very good.) My Nan was in a care home with advanced dementia after falls at home. She never had another one in the home. She liked sitting in the day room
watching the people come and go, colouring in or whatever activity they had that day. It was such a relief for my mum as well knowing she was fed and safe.

I find that as useful information. I work with dementia patients. Most have varying degree of incontinence issues.
Some who have have husbands or wives struggling at home have come into hospital with delirium due to wounds caused by incontinence.
It can cause a very quick break down of skin from simple urine burns to then pressure wounds.

You need to check as other have said the LPA. Does the GP have a copy?
No surgeon in our trust would do this.
Is it in the best interest of your mum or is your dad wanting this for himself.
There may be a mdt meeting before any planned surgery. The pros and cons weighed up.
If the surgery goes ahead and there are issues that lead to a hospital stay, then your mum could be a social admission. Social services would be involved. There would maybe a best interest meeting regarding what would be in the best interests of your mum, not what your dad thinks she wants.
It's very difficult situation and I send my best wishes to you all.

Fwiw my aunt’s incontinence was not caused by her dementia, but weak bladder muscles and pelvic floor. Indeed she developed it while her Alzheimer’s was still relatively mild, long before she got to the stage where it can be triggered by dementia itself.

Even if DM’s incontinence is not dementia related there is still not much likelihood of a surgical fix quite apart from the ethics of putting her through an operation.

Thank you cheshirecatssmile and yes I agree that MereDintofPandiculation's post was helpful, as I also didn't know about this.
I saw my dad today and we managed to have a talk about this. I learnt that the anaesthetist is talking to the urologist to discuss pros and cons, but the operation date is already fixed? What is an mdt?
My dad wants me there on the day it turns out, and I am at work (can't avoid this) on the day planned, so he has phoned to see if he can change it. So we may have some time to think things through. I have also found out the hospital and got the relevant phone number so I could now ring and try to find out more. Going to try to get my brother to do this with me so we are all on the same page.
After reading this thread I am very aware of not interfering if it seems like my dad and mum are on the same page and I should just butt out. I was observing us all carefully today, and I'm quite sure that's not how things are.