Having surgery with dementia?

[Pebble21uk]

Looking for experiences or advice on having major surgery with dementia.
Mum has Alzheimer's. She is 84 and I would class her as 'early moderate'. She has no problem recognising people, chats, no wandering or evidence of later symptoms, but she has a very poor short term memory now. She cannot remember anything told to her even minutes later, cannot organise or plan, use money etc. She lives with my 87 year old father. He does a lot for his age - has taken over all household organisation and cooking. They have a cleaner, have the garden done and I do all the food shopping, phone calls, admin, hospital appts etc.

Mum is in urgent need of a hip replacement. She is on the urgent list and is probably set for surgery some time in December. She can no longer go outside the house without a wheelchair and inside just about manages to shuffle around with a trolly.

The issue is - we feel between a rock and a hard place. Without hip surgery her hip will almost certainly fail in the not to distant future and she will be housebound / bedridden.

With hip surgery - we have been told it will almost certainly make the dementia worse in the short term and could possibly be permanent. Mum had to have a pre-asessment as she has a number of ongoing health issues besides. They said she was physically fit enough for surgery, but there is a chance that with dementia she would need to go into institutional care if it affects her badly / permanently.

What to do?

Dad is worried if she doesn't have it done (although I have said we can get more care for them at home if that's the case... I've been trying to get him to have more care anyway!!) But I am worried it will impact the dementia and then Mum may not be able to stay at home for her own safety anyway.

Last time Mum was in hospital she had delusions and was getting out of bed in the night - this was two years ago - so things have deteriorated generally since then anyway.

Does anyone have any insights... I just want to do the best for Mum!

[CMOTDibbler]

To be absolutely honest, the two times my mum had surgery during her dementia journey, once right at the beginning, and the second half way through she had massive down turns in her mental state which she didn't come back from. The second time this was a really big issue as she was then unable to comply with the physiotherapy and post surgical restrictions, and for me this would be the biggest concern for your mum as to whether she would remember to look after her new hip or if she would be at really high risk of dislocating it through leg crossing or whatever

[Pebble21uk]

@CMOTDibbler - Thank you! You see this is the kind of first hand experience I need to know about - but it's finding it.
I'm very much on the side of not having surgery - as are my sister and partner, but Dad is still quite keen and Mum will always go with what he thinks! Thanks for this... and sorry to hear of affected your mum so badly. You are right - aftercare is a big consideration!

[CMOTDibbler]

Maybe a compromise with your dad would be that if your mum broke her hip and needed surgery as an emergency to allow her to even sit and transfer that you'd go with that, but while she can shuffle round (and frankly not being able to get anywhere outside the house can be an advantage, when mum started wandering she was so slow she could be diverted home by passers by but my great aunt was physically very good and could be off in seconds) you'll leave things as they are. If your mum had a really bad reaction before, then I'd guess it is very high risk again, and if she is trying to get out of bed post surgery that could end really badly and she'd potentially have had the surgery risk, a downturn mentally, and not be able to mobilise

[freshcarnation]

Each procedure or hospital visit mum has had has left her with a downturn. It has fixed the body but her mind has become markedly worse, it sounds mean but honestly now that she can't walk anymore it's a lot safer for her.

[Candleabra]

@freshcarnation

Each procedure or hospital visit mum has had has left her with a downturn. It has fixed the body but her mind has become markedly worse, it sounds mean but honestly now that she can't walk anymore it's a lot safer for her.

Yes this is what happened with mum. Big declines following hospital treatment.

[countrygirl99]

My great gran had a hip replacement at a similar age. She was really independent living in a granny annex with mild forgetfulness before but was never right in her mind afterwards. Within 18 months she had to move into a home.

[Pebble21uk]

Thanks all - this is really confirming how I feel about things. We are speaking to the surgeon again ths afternoon and I want to be prepared.He is obviously looking at it from the POV of an orthopedic surgeon whereas we need to look at the bigger picture.

And you are right - the thought had already struck me that not being able to walk far, while awful, also safeguards her some way to the wandering stage.

Thank you... I hate this!

[freshcarnation]

It is horrible, but practicalities are most important at this stage. It can be a long stage. My mum is mid nineties and going strong..

[KittenCatcher]

If mum has very poor short term memory is she able to understand and consent to having an operation, and an anaesthetic this is something that needs to be discussed with the surgeon. What plans will the hospital offer if she does suffer post op confusion, can they guarantee to keep her safe on the ward. If she does have the operation she may need a spell in rehab to get her walking again, patients are encouraged to get up and move around very quickly.

[Scarby9]

My mum needs a hip replacement, but the doctors have agreed with my dad not to go ahead with surgery.
She cannot cope away from my dad, and struggles in any new setting. We know it is only downhill from here, but don't want to accelerate the down turn.
It is hard, because she is often in pain with the hip or other joints (RA) but she refuses painkillers and gets very distressed if you try to press them on her or jolly her into taking them.
There are no easy answers, and ultimately no good outcome, I fear, but we are not going for surgery.

[Marshmallow09er]

Hi OP

We're in a similar situation and I just wondered how the discussion with the surgeon went and if a decision was made?

to you, it's a horrible situation to be in.

[CiderWithLizzie]

My DM broke her hip aged 90 and with moderate dementia. Sadly the operation on her hip made it worse and she couldn’t remember that she had had a hip operation and was unable to do the exercise she was supposed to do for rehab. She had a stroke and passed away a few weeks later ❤️

[Pebble21uk]

@Scarby9 @Marshmallow09er @CiderWithLizzie Thanks for the replies, I've only just caught up with my thread again - sorry!
At the meeting with the surgeon we expressed our concerns again and he seemed far less reassuring this time, more negative than before and it pretty much helped us confirm the decision that it wouldn't be the best thing for Mum.
Mum has been complaining about pain in her knees as much as her hips in the last few weeks - and I think her joints and her dementia are at a stage where nothing would be gained by putting her through surgery.
Interestingly the surgeon also said (and this was mid-Nov) that they were expecting a fourth wave of Covid and all surgery would be cancelled from mid-December anyway (it has only started up again in October I think) so elective surgery would be off the table again now anyway - but that's beside the point.
We remind Mum of the discussions and what we think and she is happy not to go ahead - she always says that she doesn't want to do anything which might make her memory worse. She is on-board with painkillers - so that helps.
I'm sorry you all have / had to deal with this as well. Thank you for telling me your experiences... it's helpful to know that others have come to the same conclusions in similar situations.

[Scarby9]

Thanks for updating, OP.
Least worst options...

[LikeTheFruit]

[quote Pebble21uk]**@Scarby9* @Marshmallow09er @CiderWithLizzie* Thanks for the replies, I've only just caught up with my thread again - sorry!
At the meeting with the surgeon we expressed our concerns again and he seemed far less reassuring this time, more negative than before and it pretty much helped us confirm the decision that it wouldn't be the best thing for Mum.
Mum has been complaining about pain in her knees as much as her hips in the last few weeks - and I think her joints and her dementia are at a stage where nothing would be gained by putting her through surgery.
Interestingly the surgeon also said (and this was mid-Nov) that they were expecting a fourth wave of Covid and all surgery would be cancelled from mid-December anyway (it has only started up again in October I think) so elective surgery would be off the table again now anyway - but that's beside the point.
We remind Mum of the discussions and what we think and she is happy not to go ahead - she always says that she doesn't want to do anything which might make her memory worse. She is on-board with painkillers - so that helps.
I'm sorry you all have / had to deal with this as well. Thank you for telling me your experiences... it's helpful to know that others have come to the same conclusions in similar situations.[/quote]
OP ask the surgeon if your mum can been seen in the specialised pre-op assessment clinic run by the anaesthetists. They are often also run jointly with geriatric medicine too.
She sounds like she needs a thorough assessment and discussion (with your dad/you) about anaesthetic options.
Where I work most hip surgery is done under a spinal anaesthetic which reduces risk of post operative cognitive dysfunction (POCD). There are methods to try to reduce effects of GA also if she were to need one instead.
Of course the stress response of surgery/pain/blood loss/infection if these things were to happen can also lead to POCD.

DOI: I'm an anaesthetist

[Pebble21uk]

@LikeTheFruit Thank you for posting. Yes, Mum had a full pre-assesment with anaesthetics before anything else. It was the anaesthetist we saw who said that Mum had a 1 in 20 chance of needing to be 'institutionalised' following the operation (she had heart valve replacement surgery nearly 20 years ago and a history of pulmonary embolism & postural hypotension as well - so her history is pretty chequered with health issues!) He also said he wouldn't be able to factor the dementia in to his assessment but he would expect it to have an effect.
He was happy for surgery to go ahead - so long as a High Dependancy bed was available....and it would be by spinal anaesthetic if she had it done - but she also has a history of delusions / delirium when in hospital. Last time - which was 2019, she had no surgery... was in for observation and still had them!
So it just really feels that the odds aren't stacked in her favour. She was also feeling quite frightened by the prospect of more surgery (she has had more than her fair share in her lifetime!) so added altogether I hope / think we have made the right judgement call. Thank you though - if she hadn't had one it would have been worth doing!

[LikeTheFruit]

I'm so pleased that's all been done. Your poor mum l, and your dad and you of course. I hope you manage to get a management plan in place that you're all comfortable with.