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Elderly parents

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:
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.

OP posts:
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.

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

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?

OP posts:
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.

OP posts:
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

badger2005 · 01/12/2022 00:16

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

OP posts:
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.

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.

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.

lovelovelovebattenberg · 01/12/2022 01:55

badger2005 · 29/11/2022 09:45

I'm confused by the mixed messages I am getting from this thread.

On the one hand I am hearing that I am stuck in my own way of doing things, and should just trust that my dad knows best. I'm finding that quite hard to hear - I have been very responsive to my dad, and tried in all sorts of ways to help him, but really my role (as he sees it) is to look after mum when I come over and otherwise don't interfere, so I don't really. I should add that my mum and me have been extremely close, and I'm not at all sure that my dad has listened to her more attentively over the years.

On the other hand I'm hearing (which is what I suspected) that this operation might not even help, and that it may not be in her best interests, and so that I should - what? - call social services? I would do this if it was best, but I do really want to know what I should do.

RN here.
I think that incontinence is part of dementia as pp said to do with the signals and not recognising the "need to go"
If I were in your situation, I would ring social services. I wonder if your dad could be suffering from carer exhaustion, and if he's not able to manage your mums incontinence, he will need help as things progress.

lovelovelovebattenberg · 01/12/2022 01:58

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.

This is totally spot in advice x

fUNNYfACE36 · 01/12/2022 07:34

I think you are a little arrogant to think you know about the risks and benefits of surgery than the specialist doctors working at her local hospital. I very much doubt, given NHSvfinances that they would be recommending a needless operation.

countrygirl99 · 01/12/2022 08:54

I think her actual concern is she doesn't know what is going on and so doesn't know if it's a good idea or even if it'sjust something her dad is trying to make happen. My experience would suggest that, given the OP has POA, the only way to get any clarity is to have a chat with the GP. If you had heard some of the misunderstandings FIL had over his own treatment - the most notable being " I need a kidney scan and they are doing it at the GP surgery 9.30 tomorrow" when the GP actually said "I need to speak to your urologist about the best medication and whether he wants a scan so you can pick up a prescription for antibiotics after 9.30 tomorrow ". If I hadn't had a kidney scan myself so knew what was involved all manner of rejigging plans to get him there and look after MIL would have happened. It wasn't any form of cognitive impairment he just used to panic and just hear "blah blah scan blah blah 9.30 tomorrow blah blah at the surgery blah blah"

Mirabai · 01/12/2022 09:11

OP look. Some posters on this thread don’t actually know what Alzheimer’s is like. The ones that do have made helpful posts but they are the ones warning you not to let your father proceed with an operation.

Bottom line is if your mother is at the stage that she is not recognising relatives and thinking she is going to prison she is in no fit state to have any kind of operation. Full stop.

The poster who knows someone who had “elective” surgery with Alzheimer’s appears not to understand it’s a spectrum and in the early stages only features mild cognitive impairment. People with Alzheimer’s can still have mental capacity to make decisions.

Based on your mother’s symptoms how likely is she to pass a test for capacity to make medical decisions?

Saying your mother is on the same page as your dad is meaningless, my father, for whom I’m a carer, simply agrees with whatever people tell him as he has no real idea what they are saying.

The incontinence is most likely caused by the dementia, in which case an operation will not make any difference. It will not in any way magically make your father able to care for your mother. I mentioned my aunt’s incontinence was not caused by dementia, but even so she was still advised not to have any invasive treatment.

You MUST look at the terms of the LPA for health and welfare. Does your father even have LPA? If not he has no legal right to make any decisions for her and if you let him and it goes wrong you will be at fault. If he does.- is it “jointly” or “severally”? If jointly then your father cannot make a decision without you and the other attorneys’ joint agreement. If “severally” your father can make a decision on his own but he would be very unwise to act against the wishes of any other attorneys.

As you have LPA I would ring your mother’s GP and tell them you are extremely concerned about your mother’s condition, her capacity, and your father’s capacity to care for and make decisions for her. (Even if you didn’t you could still discuss your concerns about her care).

The private hospital aspect is a concern because, as can be seen from cases of inappropriate plastic surgery, some private surgeons are happy to perform surgery as long as you pay them.

Even if this is an NHS decision and operation, that doesn’t mean it’s in your mum’s best interests. GPs are not consultant geriatrician or neurologists and if your mother’s Alzheimer’s was diagnosed some time ago, the GP may not be up to speed with exactly what stage her dementia is at.

You need to wise up and start using your LPA for your mother’s benefit. Sometimes care from a relative can be, however loving and well meaning, inappropriate. Your DF is totally out of his depth.

What your mum really needs at this point is not an operation but night-time carer.

parsniiips · 01/12/2022 09:24

I understand your concern, an operation on an already vulnerable person can do more harm than good.

My grandma had a hip replacement age 83 while she had Alzheimer's (it was necessary after a fall completely shattered it) and she went downhill massively afterwards. She was never the same again and passed away much sooner than doctors expected.

We don't know why, but she was definitely significantly more affected by Alzheimer's immediately after the operation.

Another relative had a hysterectomy in the very early days of dementia and rapidly declined afterwards. It wasn't a necessary operation, she had a slight prolapse of the uterus and was given the choice of having a hysterectomy or seeing how she coped as it wasn't actually bothering her too much at that point. She was adamant she wants the operation so we supported her through it. She was living relatively independently with family popping in and out every day and went into a care home within weeks of having the operation.

It may have just been coincidence but we as a family felt like these operations were when things went drastically down hill.

MereDintofPandiculation · 01/12/2022 09:41

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 I can second that. My father now doesn’t get out of bed, sleeps a lot, gazes out of the window, and literally clock watches, predicting what number will come next. But he has a level of contentment that he has never before had in his life.

countrygirl99 · 01/12/2022 10:01

MIL went back into a care home when FIL died. At home she needed frequent GP visits for various reasons, at least 2 a month, sometimes more. She's had 2 in the 5 months since she went back in and one of those was a medication review.

cheshirecatssmile · 01/12/2022 10:04

Have you been in touch with your local admiral nurse? They are a lovely team of specialists dementia nurses.
You can speak to them about your concerns and how you believe your lovely dad has carers burnout.
Your dad will need supporting , even if he doesn't realise or want to acknowledge yet, they can sometimes feel as if they have let their husband/wife down as they made the vow of in sickness and in health.
It's really difficult
Best wishes

badger2005 · 01/12/2022 10:23

cheshirecatssmile thank you - I've just set up an appointment to talk to an admiral nurse online next week!

OP posts:
Mirabai · 01/12/2022 10:24

parsniiips · 01/12/2022 09:24

I understand your concern, an operation on an already vulnerable person can do more harm than good.

My grandma had a hip replacement age 83 while she had Alzheimer's (it was necessary after a fall completely shattered it) and she went downhill massively afterwards. She was never the same again and passed away much sooner than doctors expected.

We don't know why, but she was definitely significantly more affected by Alzheimer's immediately after the operation.

Another relative had a hysterectomy in the very early days of dementia and rapidly declined afterwards. It wasn't a necessary operation, she had a slight prolapse of the uterus and was given the choice of having a hysterectomy or seeing how she coped as it wasn't actually bothering her too much at that point. She was adamant she wants the operation so we supported her through it. She was living relatively independently with family popping in and out every day and went into a care home within weeks of having the operation.

It may have just been coincidence but we as a family felt like these operations were when things went drastically down hill.

Surgery is associated with increased risk of cognitive decline, called POCD - post operative cognitive decline. This is most common in people over the age of 60. It can last for a few weeks or months in younger patients, but in the elderly the decline can be long term and they don’t recover. Surgery in the elderly is also associated with systemic neuroinflammation which may be linked to the cognitive decline.

badger2005 · 01/12/2022 10:27

parsniiips this is what I'm afraid of, and the (very small amount of) research I've been doing on anaesthetics and dementia seems to say that this is quite common.
I'm not assuming I know more than the doctors fUNNYfACE36. I am just asking the question. I guess you are saying that I should not question the doctors' judgement, and in all honesty I probably wouldn't - if I heard from the GP or the NHS doctors that they would recommend this treatment all things considered then I'd be fine with that. My worry is that my dad is pushing this through and a private hospital is agreeing to it without its necessarily being in mum's best interests. I don't know that is happening! I'm just wanting to check that it isn't/couldn't be.

OP posts:
badger2005 · 01/12/2022 10:30

MereDintofPandiculation and countrygirl99 I hear what you're saying. I would be seriously considering this option if I were in charge of what happens with my mum. Once the immediate crisis of this discussion about the operation is over, I will think about how to raise it with my dad and brother.

OP posts:
fUNNYfACE36 · 01/12/2022 10:36

parsniiips · 01/12/2022 09:24

I understand your concern, an operation on an already vulnerable person can do more harm than good.

My grandma had a hip replacement age 83 while she had Alzheimer's (it was necessary after a fall completely shattered it) and she went downhill massively afterwards. She was never the same again and passed away much sooner than doctors expected.

We don't know why, but she was definitely significantly more affected by Alzheimer's immediately after the operation.

Another relative had a hysterectomy in the very early days of dementia and rapidly declined afterwards. It wasn't a necessary operation, she had a slight prolapse of the uterus and was given the choice of having a hysterectomy or seeing how she coped as it wasn't actually bothering her too much at that point. She was adamant she wants the operation so we supported her through it. She was living relatively independently with family popping in and out every day and went into a care home within weeks of having the operation.

It may have just been coincidence but we as a family felt like these operations were when things went drastically down hill.

Maybe a hip replacement did shorten her life, but perhaps it improved the quality of what she did have, by getting her out of pain.i think you need to butt out, your dad's her n of k, not you and presumably has poa too. Also the surgeons at the hospital will want to act in your mother's best interests too

badger2005 · 01/12/2022 10:36

Mirabai thank you - you have summed it up: what is needed is not an operation but a night-time carer.
I think that for my dad, something has to change. He doesn't want carers (and seems unmoveable on this), so this is something he has thought of that he thinks could make the change.
For the moment he seems willing to allow some breathing space before the operation where he/we/the urologist can think about it.
I will find out what the LPA says (it's at home in a drawer), and will ask for an appointment with my GP. When I've phoned the GP practice before, they only have same-day appointments, and the receptionist said that 'you have to be ill'. (This was because I wanted a non-urgent appointment). So I don't even know if it's possible to talk to the GP without an immediate illness, but I will try!

OP posts: