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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:
PermanentTemporary · 01/12/2022 01:06

Sorry to be yet another voice...

I would say that MN is like a big clutch of distant relatives chatting... we've all got an opinion! Take what's useful and ignore what isn't. You know your father and how much he is struggling.

You have LPA so you have every right to ask about your Mum's treatment. By rights they should get your consent before they do anything.

I would see if your father will let you read letters about your Mum's care. There are a lot of different multidisciplinary teams for different conditions and it would be useful to know which one is discussing your Mum and deciding what treatment could help, if any.

I wouldn't jump straight to a care home personally but it does sound like an assessment of your mother's care needs is much needed. I wonder if your father understands that having that would give you all information about different possibilities.

It's very sad when partners cancel care help, I think your idea of someone your mum can get familiar with to sit with her regularly and chat is such a good one.

Watchthesunrise · 01/12/2022 00:53

countrygirl99 · 30/11/2022 23:50

When MIL was in a care home for the first couple of years after her stroke FIL barely kept away and was even having most of his meals there. He was there from around 9.30am to 9pm every single day except when he had his own appointments. Once she got stronger he would take her out for walks in her wheelchair or to the pub over the road.

This is beautiful. Your lovely FIL.

alexdgr8 · 01/12/2022 00:39

OP, sorry to say but i think your father is not best placed to really care for your mother, not without help anyway.
incontinence, eventually double, is part of the progress of dementia.
imagine a child, toddler, going backwards in terms of ability, understanding, control etc.
sorry to sound harsh, but that is what it's like.
could you contact older adults social services to discuss your mother's situation.
it need not be a care home is best for her.
but a proper assessment, with input from OT and physio etc plus care-workers coming to keep her as comfortable as possible is important.
if the care of the skin is neglected that can lead to serious infections and pain.
your father doesn't really understand dementia.
he is expecting too much of her. she cannot chat away as if she did not have dementia, or amuse herself.
good luck OP.

Original poster
badger2005 · 01/12/2022 00:16

Thank you SUBisYodrethwhenLarping - if that's what's happening then that is immensely reassuring.

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Original poster
badger2005 · 01/12/2022 00:08

Thank you countrygirl99 - yes, that is what I think the ideal would look like. I don't understand why my dad and brother think that care homes are places you can only go to when you've totally lost all awareness of your surroundings. I would think that mum can sleep at the care home and then dad can (if he wants to) spend the day with her in the care home or take her out.

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SUBisYodrethwhenLarping · 01/12/2022 00:08

Just read your later posts MDT = multi disciplinary team
Basically all the departments and staff that might come into contact with your mum and have a opinion of her care and treatment while in the hospital
Anesthesiology, urology, Alzheimer's doctors etc

Original poster
badger2005 · 01/12/2022 00:06

Thank you SUBisYodrethwhenLarping that is reassuring to hear. If the doctors recommend it then I'd be totally fine with that.
I'm just worrying that my dad has hassled the GP into setting up this appointment which it turns out is at a private hospital (though I think it is a referral), and that my dad will insist on the operation, and that it might be what is needed for him to cope with mum at home rather than what is in her best interests altogether. But I'm gathering that that might not be a realistic worry - the surgeon would need to believe it was in my mum's best interest or wouldn't operate?

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SUBisYodrethwhenLarping · 01/12/2022 00:02

I just wanted to say my friend's mum with dementia has just had an elective hip replacement on nhs.
She was in lots of pain beforehand but is now able to walk with her Zimmer with no pain (operation was 2 weeks ago)
So the NHS will do elective operations on dementia patients if it is for their benefit.
I realise you are talking about a different operation but just wanted to reassure you that if NHS think it will help your mum then they will help her

countrygirl99 · 30/11/2022 23:50

When MIL was in a care home for the first couple of years after her stroke FIL barely kept away and was even having most of his meals there. He was there from around 9.30am to 9pm every single day except when he had his own appointments. Once she got stronger he would take her out for walks in her wheelchair or to the pub over the road.

Original poster
badger2005 · 30/11/2022 23:46

AluckyEllie thank you so much for your post. It's so helpful to hear your perspective.
On my mum not staying still - maybe she would. She's an incredibly gentle person. When she thought she was going to prison, she didn't shout or anything, but just asked me in a quiet despairing kind of way. (Oh that's so sad written down). She might do what was asked of her so long as she could understand it - I mean understand the instruction - she might obey it even if she didn't know why.
I am thinking a lot about your post about care homes. I feel like this is something that we should be looking into more. The posts about the skin problems with incontinence make me think that if she is going to stay incontinent then maybe she needs professional care in that way. And maybe a care home would actually be less stressful than home in some ways? Could I/my dad visit every day and take her out as often as we liked?
I'm not sure what my dad would do if he didn't have to look after her.

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Original poster
badger2005 · 30/11/2022 23:40

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.

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Mirabai · 30/11/2022 17:24

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.

cheshirecatssmile · 30/11/2022 10:03

MereDintofPandiculation · 30/11/2022 09:31

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

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.

AluckyEllie · 30/11/2022 09:59

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.

MereDintofPandiculation · 30/11/2022 09:31

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

MereDintofPandiculation · 30/11/2022 09:14

RockingMyFiftiesNot · 29/11/2022 08:51

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.

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

knittingaddict · 30/11/2022 09:02

countrygirl99 · 29/11/2022 08:57

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 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.

Original poster
badger2005 · 30/11/2022 08:55

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!

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Original poster
badger2005 · 30/11/2022 08:53

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.

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Original poster
badger2005 · 30/11/2022 08:52

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.

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Original poster
badger2005 · 30/11/2022 08:44

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.

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Original poster
badger2005 · 30/11/2022 08:40

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.

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Original poster
badger2005 · 30/11/2022 08:37

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).

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Original poster
badger2005 · 30/11/2022 08:34

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.

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Original poster
badger2005 · 30/11/2022 08:10

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.

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