is it really a life-saving operation?

[spaul]

Hi
It’s my first post so I'll say "hello" to all.
I've had a look round the forum and am sort of (sadly) warmed that there are others as well as myself going through the heart wrenching process of trying to make the "right" decisions for family and loved ones. I try to be objective....

Dad is in his late 70's and has, over the past months rapidly deteriorated from occasional forgetfulness to somewhere between stages 5&6. He now sometimes gets very aggressive, but never violent towards his long-standing partner. I don't think he recognises me now without prompting and almost certainly does not recognise my brothers. He has, however started to get very abusive towards anyone he believes to be a stranger including his grandchildren and extended family. He gets very stressed, angry and wound up with this. He recently had to attend an overnight hospital appointment for tests under general anaesthetic that he found very stressful to the point that as soon as he came round from the general he ripped out his drips and monitors and became violent towards the hospital staff believing to have been "butchered" and "assaulted". It was devastating for his partner to see him being physically restrained. He has no recollection of the visit and has forgotten all about the reason for the tests.
It now transpires that he has a large growth in one of his kidneys. There is a very good prospect of a full recovery if the kidney is removed. The consultant has, however, brought to our attention that there may be a good argument for not undertaking the operation as the risks associated with the upset it is likely to cause could outweigh the benefits and put at risk the operation itself. He feels that the operation would benefit dad's physical health in the long run. For the operation to be successful, it would have to be undertaken in the next 2 weeks.
There are far too many other factors to mention here, but the overwhelming dilemma is what is going to give the best prospects for achieving the best quality of life for dad? Is the 2 weeks he and his partner are going to suffer now recovering from the operation better than the cancer he may have to suffer in what we think will be 2 to 3 years.

It would be really helpful to read the experiences or views of others and I would be grateful for any comments.
Thanks

 

[Lynne]

Don't think my reply will help much one way or the other, but ...

Last year my 88y.o. Mum fell & broke her upper arm. It didn't heal well & was giving her pain; for a younger (non Alzheimers) patient the answer would have been obvious - pin down the centre of the bone to stabilise it.

Several medical professionals expressed doubts as to the wisdom of her having a general anaesthetic, the unspoken hints being it might well scramble what brain cells are still working & communicating with each other. However, Mum is a very 'young' 88, and physically fit & active for her age. Also an ex Nurse herself, still capable of making a lucid decision. How many painful years would she have to regret not having it pinned? Comes down to that old Quality versus Quantity argument.

In the end we decided to go ahead (albeit I made a complete pain of myself by asking to speak to the anaesthetist to make sure he understood the situation) & she sailed through with no problem.

Good luck, whatever you decide.

 

[Skye]

Hi spaul, welcome to TP.

I'm sorry you have this problem to cope with. AD and cancer are both horrible diseases, and to have both seems doubly unfair.

To operate or not to operate? Well, only you and your dad's partner can make that decision, but I think you should be talking to the AD consultant.

You say it may be two to three years before the cancer develops. His AD will also have progressed in that time, so that even if the operation would give him more quality of life now, how long is that quality of life going to last.

The anaesthetic is quite likely to accelerate his decline in any case. I don't think that you can say with confidence that he will be over it in a couple of weeks.

But I recognise that you wnat to do the best possible for your dad, and to decide against an operation might leave you with guilt feelings.

No-one can decide for you, you need to talk to as many doctors as you can, then weigh up what they say for yourself.

Good luck, please let us know what you decide.

 

[jenniferpa]

Hi spaul and welcome to Talking Point.

You really are caught between a rock and a hard place. I wasn't placed in this position but I can tell you the questions I would be asking. If the mass isn't removed, is what is going to follow going to be painfull? I'm thinking that if we are talking about cancer and it metastizes this can be an exceptionally painful experience, particularly with someone with dementia - they cannot adequately explain the pain and therefore are at risk of being undermedicated. If on the other hand they are talking about a benign tumour what will happen if they don't remove it? Renal failure isn't particularly pleasant either, particularly as I assume dialysis probably wouldn't be an option with his past response to be attached to machines etc.

If he did have surgery is there any possibility of someone being allowed to stay with him 24/7 for recovery? Some hospitals will allow this, some won't, some families can do this, some can't. There is no doubt that general anethesia can cause a real set-back in dementia sufferers although whether that set back is permanent seems to depend on the individual. I do think that one on one care, if it can be provided, can make a difference in potential outcomes though, so if you decided on the surgical route I would be lobbying hard for this sort of access.

 

[Taffy]

Hello and welcome to TP,

This is a very difficult decision for you to make. Recently my mum visited with a orthopaedic surgeon concerning her shoulder which needs replacement but with her dementia and the likelihood of her not co-operating plus the high risk of the trauma worsening the dementia it is not likely to go ahead.

I feel for you in your dilemma and it's hell having to make decisions for others well being, especially, like the one you face. What ever you decide and whatever the outcome of your decision your dad's best interests were at heart. Regards Taffy.

 

[Grannie G]

Hello spaul, you really do have a predicament, which can only be addressed by your father`s consultant.

From my limited knowledge, the anaesthetic and after effects are the biggest concerns with most surgical operations. For someone with AD, they can be even more serious.

Whatever you decide will give you cause for concern and the only answer is how surgery will affect your father now, as no-one knows how his AD will progress in the future.

Take care

Love xx

 

[spaul]

Thanks for all your responses.
I have spoken with the consultant. He tells me that whilst confined to the kidney, the cancer will not cause any pain. Renal failure is unlikely as his other kidney can cope on its own. I don’t think his partner (who has major health issues herself) is able to cope with dad when he is confused and aggressive in a strange environment. It would be far too much for her to remain with dad - who will likely be aggressive all his waking time - 24/7 for 10 days even if this were possible. On the plus side, The consultant says that the hospital staff are used to helping difficult patients. I could spend some time with him, I think he recognises me but he doesn't know who I am. I didn't know that the general anaesthetic can itself cause degeneration. It is confusing that it has taken the hospital 3 weeks to advise us of the test results - we had to chase the consultant for this- and the result is that the operation muct be carried out in less than 2 weeks. If we had waited for the results to be sent to the GP as we were told, we would still be waiting.

 

[jenniferpa]

Dear spaul

Did the consusltant indicate whether it was likely to remain confined to the kidney? I must confess I tend to think every cancer will metastize and that it probably not true.

You say you try to be objective, sø I hope what I'm going to say won't upset you. On the one hand, with treatment, your father could be expected to live say, 5 - 8 more years, all of them in a more or less confused state. His level of confort for that time is impossible to predict, but at least for some of that time he will probably be incontinent, unable to feed himself. If you've had a look around the site you'll see that things can be worse than that. On the other hand, while Alzheimer's Disease is eventually fatal (and I'm making an assumption here - you haven't indicated whether he has been diagnosed or not) everyone is different and as such, their deterioration is different, so you can't make any assumptions about his quality of life for that time.

Should you as the family choose not to go the surgical route, you can be reasonably certain that within 2 or 3 years your father will die. I think you need a better handle on the likely progression of the disease (which you may already have) but assuming adequate pain relief, I don't think it unreasonable to imagine that all the things that would happen over the normal course of his dementia will still happen, although rather more compressed. There is one major difference though. As someone with a terminal cancer I think you and his partner can expect to get considerably more support from the system. Hospice; Macmillan nurses; there are many more resources that are thrown at cancer sufferers than are available to dementia patients. It's not as it should be, but it is as it is. You'll have another, not advantage exactly, but piece of knowledge - you will have a fairly accurate idea of how long your father is going to have to suffer, which with dementia in its myriad forms is never certain. I'm not sure if that's a good thing or a bad thing but it's something that comes up a lot.

An impossible decision for all of you. I think guilt is going to be with you no matter what you decide.

Best wishes

 

[sue38]

Hi spaul,

I really sympathise for the dilemma you find yourselves in.

Is it possible to put yourself in your Dad's shoes and decide what you would want to happen if this were you? What would your Dad want if he was able to make a considered decision?

We had a similar dilemma put to us some years ago when my Dad suffered a type of brain haemorrhage (which may or may not be linked to the dementia he went on to develop). The options were :-

1. Operate to repair the arterty in the brain with the risk that because the part of the brain where the bleed had occurred controlled initiative, the likelihood was that even he survived the operation (which was by no means a certainty) my Dad could end up as a 'cabbage' (sorry that was the word given to us at the time).

2. Not operate with the high risk for the next 6 weeks that the artery would go again and this time would probably kill him, but after 6 weeks the risk would return to no higher than the average person.

And all this 3 days before Christmas!

In the end we decided to go with option 2 because we knew that my Dad would not under any circumstances want option 1, but it was a terrible decision to have to make. We discussed it as a family (my Mum, my 2 sisters and I). This should not be a decision you are left to make on your own. We gave our decision to the consultant who said 'if I thought you were wrong I would say so...' and said nothing!

We had a nervous 6 weeks - but my Dad made a full recovery - until he went on to develop dementia but as I say we are not clear as to whether the two are linked. We never told him of the decision we were asked to make. Why not? Probably because of the guilt that we chose not to have a potentially life saving operation but to 'take our/his chances'.

So I do understand some of what you are going through. As in our case I think there is no right or wrong decision.

Take care

 

[spaul]

Hi again thank you for your comments. It really helps.
The family have agonised over this and we are all coming to the conclusion that on balance it is probably better for Dad to have the operation. We have all different reasons for coming to this conclusion. After changing my mind several times, I have reached the point where the speculation on the ifs and buts has resulted in attempting to second-guess the second-guesses. I would be putting this forum server at risk if I described all the thoughts and considerations I have been through this past week. I have come to the conclusion that I cannot make this decision on what may or may not happen at some unknown point in the future. I can, if I base it only on what is fact now and what is known will happen as a result of those facts.
Dad has cancer that will deteriorate if left to a painful death in a matter of 2 to 3 years.
His Alzheimer’s will deteriorate over an unknown period.
The growth can be removed with a good chance of success.
His dementia cannot.
Everything else is speculation based on possibilities. So, like everything else that we, and particularly Dad's partner has to cope with, I have come to the conclusion that it is another case of "taking one step at a time" and "crossing bridges as we come to them". I will spare you the other clichés that come to mind, but fingers are crossed and I feel positive about this for the first time!

 

[Taffy]

Hi spaul,
I hope that everything works out well for your dad and he has a speedy recovery. Best Wishes Taffy.