The GP happens to be coming tomorrow for a medicines check. Chris started bleeding down below today. Looks like its vaginal. When it happened once before (6m ago) we (carers and me) thought it was a "pile". She is 69, diagnosed 7 yrs ago with AD, no speech, needs hoisting, head droops forward, lies in recliner chair all day, can be taken out in wheelchair, peaceful. Family agree that we wouldnt want her treated with antibiotics or other life saving things. In any case she said to one of the girls at Christmas 2008 "Please help me to die" But I suppose there may be things which could relieve pain, or make my life easier eg stop the bleeding if it became a persistent problem. But overall I think i would say to the GP "Leave well alone" Anyone else know about this? Cant see many other entries on this. Thanks Roland
What if its cancer
- Thread starter Roland
- Start date
Roland, at least have the GP check it out. There may be many different causes, which could be fairly easily rectified.
First, you need to find out what is wrong and then proceed. "What if" could drive you mad. One step at a time - please don't overwhelm yourself.
First, you need to find out what is wrong and then proceed. "What if" could drive you mad. One step at a time - please don't overwhelm yourself.
There are end of life plans which the GP will already know about. I think the one being used for my husband is called 'the golden path' or something like this. There is also the Liverpool path which is very well known up and down the country and widely used at end of life care.
I signed recently not to have resussitation for Ken. I have also been told that there are specially trained district nurses, and the hospital have told me that if pain starts (which Thank God has not happened yet) they will give him palliative treatment to relieve this. The Consultant said that this would probably be a quick but strong dose of radiation to shrink the tumor and ease the pain. Please God we don't have to go down that route.
Thinking of you.
TinaT
I signed recently not to have resussitation for Ken. I have also been told that there are specially trained district nurses, and the hospital have told me that if pain starts (which Thank God has not happened yet) they will give him palliative treatment to relieve this. The Consultant said that this would probably be a quick but strong dose of radiation to shrink the tumor and ease the pain. Please God we don't have to go down that route.
Thinking of you.
TinaT
I think you have had some good advice here, but the best is to wait until the GP has done some investigations and then cross whatever bridge there is to cross, at that time. All the best. Love and hugs Pauline xxx
Hello Roland. I agree with comments about tormenting yourself with ‘what if’ – then again I am very much a ‘need to know the worst case scenario’ person.
If I can offer anything at all as comfort at this worrying time should the ‘what if’ materialise, is that I found with mum – once her cancer was diagnosed and we had specialists on the case – her palliative care was exceptional. She was nowhere near the stages you describe Chris at, yet the consultant oncologist confirmed that any form of treatment would ‘do more harm than good’. Of course, this would be unique to her staging of the three cancers she had, her general physical health/weight etc etc as well as her dementia and does not negate someone in more advanced stages of dementia being offered curative treatments.
Please be assured, pain control is a fundamental element of palliative care, should it come to that, as indeed should be support for yourself.
It is sad, but good, that you appear to know Chris’s wishes and the family are in agreement should any difficult decisions need to be faced.
My thoughts are with you. The ‘waiting time’ for tests and results I found to be the most difficult ... so difficult not to plague yourself with ‘what if?’ and ‘what if not/what else could it be?’, I know.
Love, Karen, x
If I can offer anything at all as comfort at this worrying time should the ‘what if’ materialise, is that I found with mum – once her cancer was diagnosed and we had specialists on the case – her palliative care was exceptional. She was nowhere near the stages you describe Chris at, yet the consultant oncologist confirmed that any form of treatment would ‘do more harm than good’. Of course, this would be unique to her staging of the three cancers she had, her general physical health/weight etc etc as well as her dementia and does not negate someone in more advanced stages of dementia being offered curative treatments.
Please be assured, pain control is a fundamental element of palliative care, should it come to that, as indeed should be support for yourself.
It is sad, but good, that you appear to know Chris’s wishes and the family are in agreement should any difficult decisions need to be faced.
My thoughts are with you. The ‘waiting time’ for tests and results I found to be the most difficult ... so difficult not to plague yourself with ‘what if?’ and ‘what if not/what else could it be?’, I know.
Love, Karen, x
Roland
Some time ago dad and I decided that we would not put mum thro anything unless it was for mums comfort
But neither of us wanted mum to die because of,or with an infection
So mum had antibiotics when needed , tho we never signed a DNR we would not have allowed it ,gp did know our views .
You can only do what you feel / think is right for Chris.
I do hope its a pile or something minor
Some time ago dad and I decided that we would not put mum thro anything unless it was for mums comfort
But neither of us wanted mum to die because of,or with an infection
So mum had antibiotics when needed , tho we never signed a DNR we would not have allowed it ,gp did know our views .
You can only do what you feel / think is right for Chris.
I do hope its a pile or something minor
Dear Roland
I am going through exactly the same thing with my mother (85) who went for some tests yesterday. The nurse things she has polyps which need to be tested for cancer. We were offered a general anaesthetic or a local for them to get the cells to test as they couldn't reach them properly. I've opted for this to be done under a local which I hope will have less of a disasterous affect on her.
My thoughts are now as yours are. What if its cancer? Do we allow an operation to remove these lumps or do we say no? Mother isn't in any pain and is unaware of the bleeding which isn't that bad.
Anyway, just wanted you to know you are not alone with this particular problem. I tend to agree that pain relief is the way to go if necessary, and leave the rest alone.
Thinking of you with this difficult decision.
R
I am going through exactly the same thing with my mother (85) who went for some tests yesterday. The nurse things she has polyps which need to be tested for cancer. We were offered a general anaesthetic or a local for them to get the cells to test as they couldn't reach them properly. I've opted for this to be done under a local which I hope will have less of a disasterous affect on her.
My thoughts are now as yours are. What if its cancer? Do we allow an operation to remove these lumps or do we say no? Mother isn't in any pain and is unaware of the bleeding which isn't that bad.
Anyway, just wanted you to know you are not alone with this particular problem. I tend to agree that pain relief is the way to go if necessary, and leave the rest alone.
Thinking of you with this difficult decision.
R
Hello
My family had a very similar dilemma a few years ago. However, it was before my Nan's Alzheimer's was officially diagnosed.
We followed the advice of the doctors every step of the way with her best interests at heart. At the time the big question was should we put an old lady through such trauma of a general anesthetic and what would her quality of life be afterwards.
My Nan's dementia made her more passive and laid back and looking back it made the tests, hospital visits a lot easier for her.
I hope that you find that you don't have any decision to make.
Polly
My family had a very similar dilemma a few years ago. However, it was before my Nan's Alzheimer's was officially diagnosed.
We followed the advice of the doctors every step of the way with her best interests at heart. At the time the big question was should we put an old lady through such trauma of a general anesthetic and what would her quality of life be afterwards.
My Nan's dementia made her more passive and laid back and looking back it made the tests, hospital visits a lot easier for her.
I hope that you find that you don't have any decision to make.
Polly
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What if it's cancer
Thanks for sharing this dilemma, Roland. We were presented with a similar one yesterday regarding my 91 year-old mother-in-law. She has had Alzheimer's for at least 6 years although the signs were there years before. She has been in her present residential home 250 miles away for just under 2 years. She is in general good health although increasingly sleepy and quite aggressive when roused or touched, both to staff and to us.The home manager and GP have just informed us that she has had vaginal bleeding for about 6 months - they did not tell us before as they knew that we were dealing with the terminal illness and recent death of a very close relative, who had been the primary carer. It was clear that they did not feel further investigation would be helpful as a) it might be simply a post menopausal symptom of extreme old age b) the difficulties the GP had had in examining her to establish whether the bleeding was vaginal or rectal c) the consequent difficulties of performing any internal examination on a woman who has had no such examination since childbirth over 60 years ago and d) the unlikelihood of a consultant being prepared to investigate or treat given her age and condition. We agreed to no action at this stage, with the proviso that if she exhibited any other symptoms of pain or distress these should be reported to us and treated appropriately. We would welcome input from anyone from a medical or carer's perspective as to whether investigation and treatment should in fact be pursued in these circumstances, and to what extent.
Thanks for sharing this dilemma, Roland. We were presented with a similar one yesterday regarding my 91 year-old mother-in-law. She has had Alzheimer's for at least 6 years although the signs were there years before. She has been in her present residential home 250 miles away for just under 2 years. She is in general good health although increasingly sleepy and quite aggressive when roused or touched, both to staff and to us.The home manager and GP have just informed us that she has had vaginal bleeding for about 6 months - they did not tell us before as they knew that we were dealing with the terminal illness and recent death of a very close relative, who had been the primary carer. It was clear that they did not feel further investigation would be helpful as a) it might be simply a post menopausal symptom of extreme old age b) the difficulties the GP had had in examining her to establish whether the bleeding was vaginal or rectal c) the consequent difficulties of performing any internal examination on a woman who has had no such examination since childbirth over 60 years ago and d) the unlikelihood of a consultant being prepared to investigate or treat given her age and condition. We agreed to no action at this stage, with the proviso that if she exhibited any other symptoms of pain or distress these should be reported to us and treated appropriately. We would welcome input from anyone from a medical or carer's perspective as to whether investigation and treatment should in fact be pursued in these circumstances, and to what extent.
My MIL Liz is very frail - she's anaemic, has had significant weight loss, is confused and struggling with language. She has a fairly complicated medical history, including lymphoma (a type of cancer). In order to establish if there was any internal 'bleed' causing the anaemia (also a cause of confusion), she underwent a gastroscopy. For reasons known only to themselves, and without consulting us, they opted NOT to give her any sedation. The fallout, with regards to issues of trust and her general well-being, was horrific. She doesn't remember much at the best of times, but she certainly remembers this. The results, of course, showed nothing abnormal, but she now asks 'They're not going to hurt me, are they?' at each hospital visit we make. I want to cry.
She had 2 CT scans, the body one showed lymph node enlargement, but they weren't convinced it was a return of the lyphoma. The scan of her brain showed moderate small vessel disease, and was this was accepted as a significant contributor to her confusion.
We have decided that in her current condition, any further invasive investigations would NOT be in her best interests. They have said that even if they did more test (such as colonoscopy, for which the bowel prep is very harsh) she is in no fit state to undergo treatment if a cancer was found. Our GP is making a referral to the Macmillan nurses for some support and to discuss potential palliative care. We are hoping that this may help with liaison between her care home and the rest of the family, who seem to be of the impression we are 'leaving her to die'. This couldn't be further from the truth, believe me.
I can fully appreciate how difficult it is to find a balance between beneficial treatment/investigations and satisfying our natural desire to have definitive answers, but sometimes we have to look at the bigger picture.
I hope you are getting the help and support you need to help you through this distressing and difficult time. It's very hard, and my heart goes out to you.
TFN
She had 2 CT scans, the body one showed lymph node enlargement, but they weren't convinced it was a return of the lyphoma. The scan of her brain showed moderate small vessel disease, and was this was accepted as a significant contributor to her confusion.
We have decided that in her current condition, any further invasive investigations would NOT be in her best interests. They have said that even if they did more test (such as colonoscopy, for which the bowel prep is very harsh) she is in no fit state to undergo treatment if a cancer was found. Our GP is making a referral to the Macmillan nurses for some support and to discuss potential palliative care. We are hoping that this may help with liaison between her care home and the rest of the family, who seem to be of the impression we are 'leaving her to die'. This couldn't be further from the truth, believe me.
I can fully appreciate how difficult it is to find a balance between beneficial treatment/investigations and satisfying our natural desire to have definitive answers, but sometimes we have to look at the bigger picture.
I hope you are getting the help and support you need to help you through this distressing and difficult time. It's very hard, and my heart goes out to you.
TFN
I forgot to mention in my previous post that the Consultant said that in Ken's current condition, any further invasive investigations or treatment would NOT be in his best interests. My son and brother in law were with me and we all agreed with the Consultant.
xxTinaT
xxTinaT
Try not to worry to much and don't anticipate the worst. There are many possible causes of bleeding and most of them are not cancer. Even though cancer rates rise with age, it is still a relatively rare illness and many cases can be clearly linked with risk (such as inheritance or things like smoking). There could, for example, be a simple infection - remembering that Chris lacks the ability to articulate, or even react to, any other symptoms which may be present.
If this does turn out to be something sinister, then there will be a variety of options to be discussed. I would think that in someone of this age and with advanced dementia, then it unlikely that aggressive treatments (by this I mean extensive chemo- or radio-therapy, or major surgery) would be recommended, or even suggested. There are certainly a broad range of palliative care options.
This said, cancer treatments have changed hugely in the last few decades, with modern drugs there are fewer side-effects and other new drugs that can prevent the sort of effects that made treatments so difficult in the past.
If this does turn out to be something sinister, then there will be a variety of options to be discussed. I would think that in someone of this age and with advanced dementia, then it unlikely that aggressive treatments (by this I mean extensive chemo- or radio-therapy, or major surgery) would be recommended, or even suggested. There are certainly a broad range of palliative care options.
This said, cancer treatments have changed hugely in the last few decades, with modern drugs there are fewer side-effects and other new drugs that can prevent the sort of effects that made treatments so difficult in the past.
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