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Harriet123

New member
Jan 17, 2021
7
0
My Mum is 84 and has mid-stage dementia and has been in a care home for 2 years.

She has recently had some post menopausal bleeding.

She has always been adamant that she never wants any medical intervention of any sort.

Since post menopausal bleeding can be a sign of cancer, I have initially over ridden Mum’s wishes and allowed some investigations to take place. My reasoning being that the dementia has robbed her of the ability to change her mind, and if the cancer is early stages, it could be treated with a high chance of success.

However, I am now worried that I should not have taken her for the ultrasound and attempted (but failed) biopsy. It felt wrong

Next steps are a CT scan and a biopsy under sedation.

I know that if the cancer is advanced we would not let Mum undergo chemotherapy or any other treatments with significant side effects.

However, if the cancer is Stage 1 or 2 the treatment would be a hysterectomy and there is a high probability that this could successfully treat the cancer.

It is also possible that the investigations might show that there is just a benign fibroid, rather than a cancerous mass

I am now wondering if the proposed treatment was say a hysterectomy, would even that be the right course of action. What would the impact of a major operation be on someone with mid stage dementia?

Therefore, if we wouldn’t want her to have the operation, why would we even need the biopsy under sedation and a CT scan?

I know that I have to make the decisions on behalf of my Mum, and I want to make the best possible decisions for her. It is an extremely difficult situation; hence I am seeking advice from others who have been in similar situations.

Do we proceed with investigations and possible surgery or halt the process now?
 

Duggies-girl

Registered User
Sep 6, 2017
2,915
0
Hi @Harriet123 I can't give you any advise because everyone is different and has different views. My dad was diagnosed with oesophageal cancer back in 2018 He had lost a great deal of weight and the doctors couldn't find out what was wrong with him until he finally had an endoscopy which revealed a stage 3 tumour.

Dad was 88 and had alzheimers but still managed to live alone with support from me. Dad and I agreed that we would take the doctors advice so I did not have to make any choices. Dads oncologist advised palliative care for dad and we went from there. Dad was not suitable for the operation due to general state of health and frailty so it was just a stent and check ups. His oncologist said that chemo would do him more harm than good. There may have been a possibility of palliative radiotherapy at a later date but it didn't happen. Dad did have a couple of scans and regular check ups.

Dad could have anything that would keep him comfortable and nothing that could cause him harm. We went to all appointments and he had all the investigations and we let the consultants make the decisions although I suppose that if I had disagreed with anything then I would have had to speak up.

Dad survived another 2 years and was very happy, his consultant said that he was the perfect advertisement for palliative treatment for the elderly and she was right. He actually did very well.

I hope this helps.
 

Harriet123

New member
Jan 17, 2021
7
0
Hi @Duggies-girl Thanks for sharing. It really does help to know what others have gone through. Whatever path we take it's not going to be easy. I'm glad that your Dad had a further comfortable couple of years. xx
 

Louise7

Volunteer Host
Mar 25, 2016
3,002
0
Hello @Harriet123 welcome, you'll find lots of friendly support here. I was in the same position as you a few years ago, with 'possible cancer' being suggested for Mum due to discharge/possible bleeding 'down below'. As a family we discussed the situation and agreed for a CT/biopsy to take place on the basis that we wanted to know if it was cancer or not in order to ensure that Mum was provided with the appropriate level of care, pain relief etc should the tests prove to be positive. Prior to the investigations/confirmation of a diagnosis we tried not to think further ahead with regards to what decisions we may or may not have to make regarding further treatment should the result be positive . Thankfully the biopsy was negative, which as you can imagine was a relief and weight off our minds, and Mum suffered no ill effects from the procedure or sedation, although sedation can sometimes have a negative effect on dementia. It's a very personal decision as to whether to allow invasive investigations or not, and not an easy one to make, and I can only suggest taking your time to think things through and also talk things through with other family members too if you can, so that you don't feel the burden of the decision making all on your own.
 

Harriet123

New member
Jan 17, 2021
7
0
Hi @Louise7 That's great advice, thank you, and what a relief that the tests proved negative. Definitely one step at a time. CT scan is first up, I suspect Mum may dig her heels in and refuse, but I will take her and hope. The sedation is a concern, and I need to find out more about the level of sedation that would be used. I do have a brother to discuss things with, but he lives far away and is not as close to the situation as I am. This means that he will probably agree with whatever I suggest, whereas agreeing the plan together would be much better. I'll give this another go!
Thanks again xx
 

marionq

Registered User
Apr 24, 2013
6,438
0
Scotland
By coincidence I am in exactly the same quandary. For twenty years my husband
And I gave support to his handicapped sister. She is now in a care home and though her dementia is mild she is totally deaf and cannot speak. Last week she had a scan of her womb and a biopsy taken. I have no POA and don’t want one. Nevertheless because no one in her birth family wants to get involved I am constantly contacted as next of kin.

The decision now is what to do about benign polyps or cancerous tumours depending on which they turn out to be. I don’t feel equipped to answer that. I will make an appointment with her family doctor and ask for a discussion on options and a decision taking into account she is 85
and quite fearful of pain.
 

Louise7

Volunteer Host
Mar 25, 2016
3,002
0
@Harriet123 Things seem to have moved on with regards anaesthetics these days to help minimise any potential problems. Mum had a general anaesthetic for the investigation/biopsy (hysteroscopy) which was decided by the consultant because of her dementia, plus she would have been unlikely to keep still. The anaesthetist was aware that Mum had dementia, was very careful in ensuring that the dosage matched Mum's size (she is tiny) and was just enough to sedate her for the op but not 'over sedate' her if you know what I mean. Prior to your Mum having the op the consultant should have a chat with you to talk through the procedure, answer any questions and help to allay any concerns that you might have, and will also be able to confirm the level/type of sedation your mum would have. Good luck with whatever you decide to do, hope your mum will be ok. If the procedure your mum is having is a hysteroscopy you may find this link helpful as it explains the process and types of anaesthetic that may be used:

 

love.dad.but..

Registered User
Jan 16, 2014
4,910
0
Kent
This is a difficult one to answer, my instinct with experience of a different medical matter and decision for my dad a few years ago. I think apart from the invasive investigations which someone in mid stage may or may not tokeeate or accept, if cancer is found could they cope with the gruelling treatment and to what end....adding to their already distressing dementia and not able to understand what and why of the ongoing investigations and subsequent treatment.? My dad had an increasingly painful iguinal hernia which he had before entering a care home but came to an emergency situation one Christmas. In that instance we pushed for and fortunately the surgeon agreed to operate to give him a pain free life even though his other health problems meant the operation was not without considerable risk but a risk worth taking. Dad was very frightened of even simple procedures by that stage so a lot of routine checks like annual blood checks had been stopped by then as too distressing for him, he was in late moderate stage. However had it been a different scenario and cancer was suspected we would not have put him through investigations or treatment except to keep him comfortable as it would have distressed him too much. when...and I know for some this may be difficult to accept...the dementia or something associated would take him at some time anyway. He had a further 2 years pain free and died from sepsis and a stroke, the treatment in hospital was not working so we made the kind decision for dad to go back to his care home to die peacefully with us around him. I have never regretted making any of these decisions for him. Good luck, whatever you decide will be the right one made with love for your mum.
 

Harriet123

New member
Jan 17, 2021
7
0
By coincidence I am in exactly the same quandary. For twenty years my husband
And I gave support to his handicapped sister. She is now in a care home and though her dementia is mild she is totally deaf and cannot speak. Last week she had a scan of her womb and a biopsy taken. I have no POA and don’t want one. Nevertheless because no one in her birth family wants to get involved I am constantly contacted as next of kin.

The decision now is what to do about benign polyps or cancerous tumours depending on which they turn out to be. I don’t feel equipped to answer that. I will make an appointment with her family doctor and ask for a discussion on options and a decision taking into account she is 85
and quite fearful of pain.
Hi @marionq I really hope that the result for your sister-in-law is benign polyps. Such a difficult time trying to make decisions on others behalf. xx
 

Harriet123

New member
Jan 17, 2021
7
0
@Harriet123 Things seem to have moved on with regards anaesthetics these days to help minimise any potential problems. Mum had a general anaesthetic for the investigation/biopsy (hysteroscopy) which was decided by the consultant because of her dementia, plus she would have been unlikely to keep still. The anaesthetist was aware that Mum had dementia, was very careful in ensuring that the dosage matched Mum's size (she is tiny) and was just enough to sedate her for the op but not 'over sedate' her if you know what I mean. Prior to your Mum having the op the consultant should have a chat with you to talk through the procedure, answer any questions and help to allay any concerns that you might have, and will also be able to confirm the level/type of sedation your mum would have. Good luck with whatever you decide to do, hope your mum will be ok. If the procedure your mum is having is a hysteroscopy you may find this link helpful as it explains the process and types of anaesthetic that may be used:
Thanks again, @Louise7 The link to the hysteroscopy information was very useful. We don't have a date for the biopsy with sedation yet, but I hope that I can get to have those conversations in advance. At what stage do you get to see the anesthetist and I wonder if that still happens in Covid days?
 

Harriet123

New member
Jan 17, 2021
7
0
This is a difficult one to answer, my instinct with experience of a different medical matter and decision for my dad a few years ago. I think apart from the invasive investigations which someone in mid stage may or may not tokeeate or accept, if cancer is found could they cope with the gruelling treatment and to what end....adding to their already distressing dementia and not able to understand what and why of the ongoing investigations and subsequent treatment.? My dad had an increasingly painful iguinal hernia which he had before entering a care home but came to an emergency situation one Christmas. In that instance we pushed for and fortunately the surgeon agreed to operate to give him a pain free life even though his other health problems meant the operation was not without considerable risk but a risk worth taking. Dad was very frightened of even simple procedures by that stage so a lot of routine checks like annual blood checks had been stopped by then as too distressing for him, he was in late moderate stage. However had it been a different scenario and cancer was suspected we would not have put him through investigations or treatment except to keep him comfortable as it would have distressed him too much. when...and I know for some this may be difficult to accept...the dementia or something associated would take him at some time anyway. He had a further 2 years pain free and died from sepsis and a stroke, the treatment in hospital was not working so we made the kind decision for dad to go back to his care home to die peacefully with us around him. I have never regretted making any of these decisions for him. Good luck, whatever you decide will be the right one made with love for your mum.
Hi @love.dad.but.. I agree gruelling treatments are not an option, but if there was a simple procedure that could avoid pain and not worsen the dementia that would be great, but I think I may be unrealistic here, although, who knows. I'm glad that your Dad had further pain free years and that you were with him at the end. Thank you for sharing, it feels like once dementia progresses to a certain point it becomes the overriding factor in many scenarios. xx
 

love.dad.but..

Registered User
Jan 16, 2014
4,910
0
Kent
Think there is no easy answer it depends so greatly on so many factors of likely outcome, stage of cancer if found, stage of the dementia in terms of receptive to investigation and likely treatment and hopefully you will be led and given all rhe available options by the doctors, but I can only share my experience and thinking behind the decisions. best wishes to you both
 

marionq

Registered User
Apr 24, 2013
6,438
0
Scotland
@Harriet123 i thought I would update you on my experience. SIL was diagnosed with cancer of the uterus and as communication with her is nigh impossible I was given the task of deciding between alternate treatments. Her surgeon said to consult and talk with whoever I wanted then come back with a decision.

Hysterectomy, general anaesthetic, followed by chemotherapy/radiotherapy with subsequent nausea, possible pain and hair loss. At 85 and with mild dementia as well as her disabilities I found that no one was keen on this option. Indeed it might shorten her life.

The other option was hormone tablets which would stop her bleeding and slow down the progress of the tumours. It’s not a cure but we’ve gone for that in the hope she gets a few more years with some quality of life.

I hope not to have to face such a choice again.
 

Harriet123

New member
Jan 17, 2021
7
0
@marionq thank you so much for sharing your experience, that really is very helpful.

An update on Mum’s situation, I took her for the CT scan and was able to be with her the whole time. It was difficult but manageable. The CT scan shows a large mass in the womb, but fortunately no spread.

On Friday we went to the hospital for the sedated biopsy. It was a truly horrendous day. I could see that Mum was anxious and distressed, but my presence kept her calm. I asked many questions about the impact of anaesthetic on dementia and they suggested doing the procedure with an injection. When Mum went into the operating theatre I was not with her and Mum refused to let anything happen to her whatsoever. (After the injection failed they were going to try sedation). I should have been with her, I should never have let her go in without me. But now on reflection I feel that Mum was finally having her say by refusing the procedure. Maybe if I had been with her I could have persuaded her, but what then, would her dementia have got worse?
My Mum cannot cope with being in a hospital, and I think we are at a place where it is right to say no more procedures. We wouldn’t go ahead with aggressive treatments anyway, so why put Mum through the distress of a sedated biopsy. I will discuss with Mum’s GP, consultant and a very kind Admiral Nurse and agree a way forward.
Thank you all for your shared advice and experiences.
 

Duggies-girl

Registered User
Sep 6, 2017
2,915
0
@Harriet123 I agree, if your mum can't cope with further investigations then now is the time to stop. I was lucky with dad because he was very compliant but if he had ever said no, then no it would have been.
I wish you and your mum well.
 

imthedaughter

Registered User
Apr 3, 2019
693
0
It sounds like you had the right instinct. My nan had a hysterectomy 18 months ago, coincidentally at the same time I moved dad into the care home, but she has no dementia and was able to decide. She coped remarkably well even though she had a reaction to the biopsy sedation, and they also did radiation afterwards which she could have refused, and I wouldn't have blamed her. But if your mum was refusing an injection for the biopsy, the hysterectomy would have been a whole ordeal.
My dad (who has dementia) is deeply afraid of operations amd I can't think of any I would agree too. They kindly offered brain surgery to remove some clots before but dad was terrified at the idea and refused, and we agreed to let it be.