Big operations and Alzheimers - advice please

[Chris Betty]

Hello everyone,

I am looking for some advice/peoples experience regarding the possible negatives effects of big operations on Alzheimers symptoms.

My mum is 75 and was diagnosed with Alzheimers just over 18 months ago (although she showed symptoms long before this). She has also been suffering from severe arthritic hip pain for over a year and a corresponding loss of mobility.

We have recently had a long-awaited consultation with an orthopaedic specialist and were faced with some unpleasant news and now a very difficult decision on whether to go ahead with a hip operation. Whilst the consultation showed further physical complications for the op in the form of a twisted spine the most alarming thing was the news that the surgery procedure itself has in some cases caused peoples Alzheimers to become much worse post operation.

The consultant informed us that this can be quite significant in some cases but that there is no real research or numbers/percentages behind this finding.

I would really appreciate any knowledge, experience or advice that people in this group may have from their own loved ones who also have Alzheimers and have either had or face a significant operation.

Anything that might help make this very difficult decision would be great.

Thank you and best wishes,
Chris

 

[Jessbow]

Given your mums understanding level now, do you think she would be capable of the rehab following the op. If its unlikely that should could, would the significant pain be worth the ( Maybe) no gain?

its quite often that people with dementia do take a down step following an anesthetic- are they proposing a GA or a spinal injection?


What do you think there is to be gained?

My mother really needed heart surgery- she would never have managed the 'after' so we didnt g ahead

 

[jaymor]

Hi @Chris Betty and welcome to the forum.

It is well known that an anaesthetic can cause an advancement of dementia. Sometimes it diminishes after a while though maybe not back to the level before the operation. It’s a tough decision to make.

My husband had an operation for a hernia and he really took a dive but did over several months regain some of the loss but not back to where he was. His operation would have been less traumatic than the one your Mum will undergo.

Has the consultant given you any idea what help re control of pain can be given if you decide the operation will not go ahead?

 

[Duggies-girl]

Hi @Chris Betty I am sorry to hear that your mum is experiencing pain and that you find yourself with this dilemma and it is a hard choice. You will get lots of replies with different views and hopefully they may help you. In my experience even a stay in hospital can prove detrimental to someone with dementia and any operation can do the same. My dad had 3 weeks in hospital with pneumonia and the man who eventually came home was a shadow of his former self, mentally and physically. He went from being a man who could look after himself with a great deal of help from me to a man who was lost in his own home. He did recover a bit over some months but never to his former self and I had to move in with him 24/7

I suppose it would depend on what your mum would gain from the operation. You say that she is in pain but is she managing otherwise. Perhaps they could look at her pain control.

My dad also had oesophageal cancer and his consultant quickly ruled out any operation and prescribed palliative care which I agreed with because I think the operation would have killed dad in his frail condition. Dad was a lot older than your mum though so it's a different story.

The thing that helped me the most was that I had discussed with dad beforehand 'what would we do if dad was ill' and we both agreed that we would listen to the advice given by whichever doctor at whatever time which we did so I did not have to make any choices but I suppose I may have just been lucky that I always agreed with them.

 

[canary]

Its a bit like Russian roulette.
Some people have no, or very little progression of their dementia after surgery, others like my mum had a downturn after cataract surgery which she never regained and that was just with local anaesthetic.
Its not just the anaesthetic. Would your mum be able to co-operate with the physios afterwards in order to regain her mobility? She may have the surgery, but then not be able to regain her mobility and end up wheelchair bound.

I think you will have to think very hard about this and work out all the pros and cons. Im getting the feeling from what you have written that the consultant is not very keen.

 

[Rosettastone57]

My mother in law had an emergency operation on her leg and she certainly deteriorated in her cognitive function, becoming more deluded and having hallucinations. The main difficulty was her refusal to cooperate with the physio. She was incapable of following instructions . Her mobility never really improved and she was still a high falls risk

 

[Weasell]

My mother entered the hospital for her knee operation, she drove to Tesco independently and did some shopping the day before.
She occasionally forgot things but never enough to make you think ‘dementia’.
She telephoned home to say the surgery had gone well and then went to bed that night.
The following day she could not hold a tea cup, she did not recognise her family.
I said it was likely she had had a stroke and demanded a scan.
The hospital did scan her and claimed it was delirium, not a stroke. Not sure I am completely convinced but choose to accept what they diagnosed.
She did recover from the delirium but never to the point she could drive again.

She never did any physio, she attended the appointments and assured them she would, but it was always later or tomorrow for anything that should be done at home.

I would google ‘ delirium’ and bring yourself up to speed on that?

 

[lemonbalm]

My mum had a hip replacement a few years ago, after a fall where she broke her hip. She had the most appalling delirium after the operation which lasted for several weeks. This isn't going to sound very nice but she was like a wild animal much of the time.

She was fortunate to be discharged into a rehabilitation ward in a small hospital but really struggled to follow the instructions of the physios. They persevered though and, after 3 months, she was more or less physically recovered, could walk, with a limp, using a three wheeled walker (couldn't get the hang of a frame, she used to drag it behind her) but was no longer able to do simple tasks like make tea or prepare even a simple meal.

Your mum may be ok @Chris Betty but it's a big risk to take. If it were me, with what I know now, I would look to pain relief as the solution. To be honest, I would really hesitate to put anyone with dementia through any surgical procedure or hospital treatment that was not absolutely essential.

 

[Weasell]

My mum had a hip replacement a few years ago, after a fall where she broke her hip. She had the most appalling delirium after the operation which lasted for several weeks. This isn't going to sound very nice but she was like a wild animal much of the time.

She was fortunate to be discharged into a rehabilitation ward in a small hospital but really struggled to follow the instructions of the physios. They persevered though and, after 3 months, she was more or less physically recovered, could walk, with a limp, using a three wheeled walker (couldn't get the hand of a frame, she used to drag it behind her) but was no longer able to do simple tasks like make tea or prepare even a simple meal.

Your mum may be ok @Chris Betty but it's a big risk to take. If it were me, with what I know now, I would look to pain relief as the solution. To be honest, I would really hesitate to put anyone with dementia through any surgical procedure or hospital treatment that was not absolutely essential.

Such sound advice.
Please can I add guilt is something we all suffer from!
Guilt if you do.
Guilt if you don’t
Also remember, not making a decision , is a decision?

 

[Chris Betty]

Given your mums understanding level now, do you think she would be capable of the rehab following the op. If its unlikely that should could, would the significant pain be worth the ( Maybe) no gain?

its quite often that people with dementia do take a down step following an anesthetic- are they proposing a GA or a spinal injection?


What do you think there is to be gained?

My mother really needed heart surgery- she would never have managed the 'after' so we didnt g ahead

Hi @Jessbow thank you for your reply.

With mums current understanding level she should be fine with following the rehab but would need help making sure she stuck to it I think. The consultant said that they would go for a spinal injection to avoid GA but the injection could possibly be a bit more complicated than usual due to the curve in the spine.

We have been advised that the best result would be pain relief but that we could not expect a huge improvement in mobility.

 

[Chris Betty]

Hi @Chris Betty and welcome to the forum.

It is well known that an anaesthetic can cause an advancement of dementia. Sometimes it diminishes after a while though maybe not back to the level before the operation. It’s a tough decision to make.

My husband had an operation for a hernia and he really took a dive but did over several months regain some of the loss but not back to where he was. His operation would have been less traumatic than the one your Mum will undergo.

Has the consultant given you any idea what help re control of pain can be given if you decide the operation will not go ahead?

Hi @jaymor thank you for the reply.

Yes it will be a big operation and is definitely a very hard decision. If there were a better from of pain relief that might be the better option. She currently takes prescription co-codamol daily but the opiate in this is obviously not great for the Alzheimers symptoms either. The consultant did advise to explore other options of pain relief but I am not sure what might be available - do you know of anything that might be effective and not detrimental to her memory loss?

Best wishes
Chris

 

[Chris Betty]

Hi @Chris Betty I am sorry to hear that your mum is experiencing pain and that you find yourself with this dilemma and it is a hard choice. You will get lots of replies with different views and hopefully they may help you. In my experience even a stay in hospital can prove detrimental to someone with dementia and any operation can do the same. My dad had 3 weeks in hospital with pneumonia and the man who eventually came home was a shadow of his former self, mentally and physically. He went from being a man who could look after himself with a great deal of help from me to a man who was lost in his own home. He did recover a bit over some months but never to his former self and I had to move in with him 24/7

I suppose it would depend on what your mum would gain from the operation. You say that she is in pain but is she managing otherwise. Perhaps they could look at her pain control.

My dad also had oesophageal cancer and his consultant quickly ruled out any operation and prescribed palliative care which I agreed with because I think the operation would have killed dad in his frail condition. Dad was a lot older than your mum though so it's a different story.

The thing that helped me the most was that I had discussed with dad beforehand 'what would we do if dad was ill' and we both agreed that we would listen to the advice given by whichever doctor at whatever time which we did so I did not have to make any choices but I suppose I may have just been lucky that I always agreed with them.

Hi, thank you for your reply. I am very sorry to hear about your dad too. Yes mum is coping just about in general but the pain and lack of mobility really does get her down. I am going to look into alternative forms of pain control before any further movements towards an operation.
No doctors or professionals have really been able to advise us one way or another unfortunately!

 

[Chris Betty]

Hi all, thank you very much for your replies and personal accounts of your own experiences of loved ones in similar circumstances.

A little more information is that mum was diagnosed with mild to moderate Alzheimers 18 months ago but showed symptoms many years before this. She is still pretty with it to speak to but the main things she has forgotten are around household bills and admin, personal finances and cooking - mainly the sequencing of the cooking process and how to use appliances. She is still driving but can only go to the nearest couple of villages a few miles away.

For her hip pain she is taking prescription Co-Codamol which with it containing opiates is obviously not ideal for memory either. Does anyone know of any other forms of pain relief which may be effective and not detrimental to the memory loss?

Im mum's current state I think she would be ok with the surgery procedure, the hospital stay and doing rehab although she would need reminding and motivating to do the physio - but this obviously depends on the procedure not having a declining effect on her Alzheimers which is staring to sound more common than I first hoped!

Due to both the Alzheimers and the further physical complication of her having a curvature of the spine we were advised that she would need the most comprehensive form of the surgery - I forget the term at the moment - but where further work is done to stabilise the new hip in its socket. We were also told that the curvature could potentially make a spinal injection less effective for the anaesthetic - obviously we would like to avoid GA if we were ever to go ahead.

She has recently had two successful cataract surgeries with no detrimental effects but these are obviously very different and far more minor with only a very local anaesthetic to the eye area.

If anyone knows of alternative forms of pain relief that might be effective in this situation that would be much appreciated.

Best wishes

 

[Countryboy]

Hello everyone,

I am looking for some advice/peoples experience regarding the possible negatives effects of big operations on Alzheimers symptoms.

My mum is 75 and was diagnosed with Alzheimers just over 18 months ago (although she showed symptoms long before this). She has also been suffering from severe arthritic hip pain for over a year and a corresponding loss of mobility.

We have recently had a long-awaited consultation with an orthopaedic specialist and were faced with some unpleasant news and now a very difficult decision on whether to go ahead with a hip operation. Whilst the consultation showed further physical complications for the op in the form of a twisted spine the most alarming thing was the news that the surgery procedure itself has in some cases caused peoples Alzheimers to become much worse post operation.

The consultant informed us that this can be quite significant in some cases but that there is no real research or numbers/percentages behind this finding.

I would really appreciate any knowledge, experience or advice that people in this group may have from their own loved ones who also have Alzheimers and have either had or face a significant operation.

Anything that might help make this very difficult decision would be great.

Thank you and best wishes,
Chris

Hi Chris Betty not sure if this helps as we all approach things in life differently { re; your question }
I'm 78 and have dementia 10 weeks ago I had surgery to remove my Kidney because of Cancer so a pretty major operation, Prior to my Surgery the Consultant wrote to my GP and a copy to me saying :

xxxx has type 2 diabetes which is diet controlled, ischaemic heart disease, hypertension and dementia. I am aware that if he has a general anaesthetic this could worsen his dementia and give him cognitive impairment for up to 18 months

So ok I had decision to make myself Not my wife or children although they supported me in any decision I made so as usual I looked at the Positive’s & Negative’s and decided the Surgery was the better option and everything was fine Unfortunately my one Kidney isn’t coping at the moment and I may be on Dialysis shortly but will cross that bridge when time comes best not to worry