GP suspects mum has cancer - CHC enquiry

Shabba

Registered User
Apr 9, 2016
76
0
Hi everyone, am in a bit of shock. Mum's 81 (Vasc Dem & Alz) and has been in NH a few months. I noticed in the last 10 days or so she's hardly eating, being difficult with medication taking, and getting more angry, she's normally so placid. So I just put it down to maybe another downturn phase in the dementia. Nurses and carers all noticed this and have kept me updated so no qualms there, they are wonderful. I go in every day and they keep me fully up to date what she's eaten, what upsets her etc.

Last week GP suggested blood tests and he had a quiet word with me yesterday. Said markers suggest malignancy somewhere. I said do you mean cancer, he said it was very likely. No lump in boobs, but to determine it would of course mean xrays, tests (colonoscopy, endoscopy etc). My brother and I have H&W POA and have discussed before "what if" scenarios. Mum is now totally immobile, doubly incontinent (well, has permanent catheter now as bladder doesn't work), doesn't know us, and as we all know the dementia can only go one way. I told Dr we didn't want invasive tests or cause her trauma and distress, I couldn't bear it. It just feels like taking such responsibility, does anyone agree with me? Even if detected/located, what would happen - chemo, radiotherapy, surgery - I just can't see what quality of life she would have. It's beyond upsetting, but feel it's the kindest thing to do. Dr agreed, said he expects to see a marked deterioration over coming weeks, and they would keep her comfortable and pain free in NH, so palliative care. I don't want hospital if it can be avoided at all costs, and the staff are so lovely in NH and they are accredited with Gold standard end of life care, I just feel it's the best I can do for mum.

She is self funding (well we have deferred payment agreement til we sell the house) but does anyone know if CHC should be considered at this stage, or would they feel they need a "definitive" cancer site diagnosis. It almost feels obscene asking at a time like this, but if poor mum goes more than weeks into months, and she should be entitled to it, I thought I'd ask.

I have rambled much more than I set out to do, sorry, I think I'm in such shock and can't believe this is happening on top of everything. But my logical brain knows "somethings going to get her", like it will us all, and in the strangest way I just want her to be at peace and never know the worsening of the dementia. Thank you for listening x
 

tigerlady

Registered User
Nov 29, 2015
427
0
I would certainly ask for the fast track CHC funding. After all, if she didn't have dementia and had any other disease, and then got cancer, it would all come under the NHS anyway. You have a diagnosis from the doctor that there is malignancy in her body, and that she is at end of life. Thank goodness you have her in a lovely care home that can provide first class and pain free end of life nursing. My thoughts are with you at this sad time xx
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
I haven't any knowledge of CHC process but on the point of treatment for the cancer I totally agree, why put her through it when frankly something because of the dementia will
Bring her to end of life. I have poa health for dad, he has history of heart disease, a high psa level which the GP said possibly indicates prostrate cancer very common as men age, dad is 86. We have DNR in place as we know that is what he would have wanted and we hope he slips away at some point to a dignified peaceful end of life without medical intervention.
 

Shabba

Registered User
Apr 9, 2016
76
0
Hi, did mum sign any paperwork prior to becoming ill?

My mother, some five years ago signed documents with the GP saying do not resuscitate etc and has always made it clear with both the family and medical professionals. She’s had cancer twice and appeared in the newspapers and on tv regarding dying with dignity – so it is well documented and recorded.

I do have LPA for Health and Welfare.

My heart goes out to you, it is such a hard decision. I’m grateful, my mother lived a full life, she’s 76 and if something like this happened to mum now, I would respect mum’s previous wishes when she was of sound mind, which was not to have invasive procedures.

On admission to NH they asked my brother and me did we want DNAR on records, we and GP agreed we did. When dad died 4yrs ago mum was well, and hospital asked that of her for dad. She said no, do not resus, dad had asbestos related cancer and was being aspirated etc, it was horrific. In the end mum said STOP, it was too traumatic to his frail body, and a little while after she said to us if that happens to me, let me go in peace and with dignity. But didn't sign anything to this effect. But with POA we feel we are adhering to her wishes.
Bless you, too, CardiffLady, what you've been through too, my love to you and mum x
 

Shabba

Registered User
Apr 9, 2016
76
0
I would certainly ask for the fast track CHC funding. After all, if she didn't have dementia and had any other disease, and then got cancer, it would all come under the NHS anyway. You have a diagnosis from the doctor that there is malignancy in her body, and that she is at end of life. Thank goodness you have her in a lovely care home that can provide first class and pain free end of life nursing. My thoughts are with you at this sad time xx

Thank you so much tigerlady. I gave up work 4yrs ago to care for mum at home til NH, and swore I would never ever do it. But the "crisis" hit and it was decided all round for the best. But I cannot praise the NH enough, after all the bad press re NH's I can't believe there are (hopefully) many like this. It is mum's "home" now and I absolutely couldn't wish for better care and even "love" they have for her and others. Love to you too xx
 

Shabba

Registered User
Apr 9, 2016
76
0
I haven't any knowledge of CHC process but on the point of treatment for the cancer I totally agree, why put her through it when frankly something because of the dementia will
Bring her to end of life. I have poa health for dad, he has history of heart disease, a high psa level which the GP said possibly indicates prostrate cancer very common as men age, dad is 86. We have DNR in place as we know that is what he would have wanted and we hope he slips away at some point to a dignified peaceful end of life without medical intervention.

Oh thank you, I don't know what I'd do without people like you who totally understand, it's a hard opinion to broach with some people isn't it. Love to you and dad x
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Oh thank you, I don't know what I'd do without people like you who totally understand, it's a hard opinion to broach with some people isn't it. Love to you and dad x

Dad is very frightened due to lack of understanding because of dementia of any procedures even taking temperature or blood pressure so any intervention is very traumatic ...2 emergency hospital stays have reinforced this...., so for me it is sensible to keep things to an absolute minimum for dads sake. He wouldn't cope with hospital appointments and certainly not treatment. I wouldn't personally consider any invasive treatment to prolong life as dad is in the advanced stage so frankly why makes his quality of life such as it is any more difficult for him. One chap in dads NH is peg fed and almost totally immobile, I completely understand why his wife has pushed for that to be done and respect anyone's decision but I think I would take the route of providing Dad wasn't being starved or dehydrated to end of life, let nature and the illness take its natural course. Just because medical advances have enabled us to prolong life in certain circumstances maybe that isn't always a good thing. Some may disagree but I am with you.
 
Last edited:

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Mum has a DNR and I would do exactly the same thing in your shoes Shabba.
Passing away in a lovely NH where the staff know you and you dont have to be moved strikes me as a lovely way to go. Its not going to be easy for you when the times comes, I know, but I think you have made a good and compassionate decision.
 

Shabba

Registered User
Apr 9, 2016
76
0
Mum has a DNR and I would do exactly the same thing in your shoes Shabba.
Passing away in a lovely NH where the staff know you and you dont have to be moved strikes me as a lovely way to go. Its not going to be easy for you when the times comes, I know, but I think you have made a good and compassionate decision.

Thank you so much canary. Just sat here thinking, even if she went to hospital and was prodded and poked, I'm sure the medics would say they didn't think any treatment would be viable, so why would I put her through that. She is warm and cosy where she is, and most importantly loved, I would feel I had caused her such suffering at the end of her life if I did choose that option, I would never forgive myself. Love and hugs to you and your mum x
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Shabba, I am sorry to hear about your mum and can well imagine you are in shock.

It's not pleasant to have to make such important decisions for other people and I am sorry you find yourself in this situation. I do hear what you say about the responsibility feeling so huge and overwhelming. I think a lot of us have been there.

I have to say, if it were me, I would feel as you do: no tests, no hospital, no treatment, and comfort care/palliative care at the current nursing home. They sound like they are providing good care to your mother and although I'd ask about hospice and admiral/Macmillan nurses, just so you know what your options are, if the NH can provide the care needed, that's great.

My FIL was diagnosed with, and treated for, cancer this year. Now that I understand what it entails, I would not wish that on anyone, and especially not anyone with dementia. As your mother is not a good candidate for surgery/radiation/chemotherapy, I am not sure there's any point in putting her through what would be necessary to diagnose her. Even minimally invasive procedures, such as CT scans, an MRI, x-rays, can be upsetting for a person with dementia. I think you're right to think about it carefully.

Your motives are good: to spare your mother unnecessary distress and upset and possible pain, and to honor what she told you about letting her go with peace and dignity.

I don't know how much any of that helps, but I would say that the fact you're concerned enough to think it through enough to post about it, means you're like to make a reasoned and reasonable decision.

Sending all best wishes and lots of support.
 

Not so Rosy

Registered User
Nov 30, 2013
578
0
My Dad was already in a nursing home receiving CHC on the grounds of his Dementia. In December following a colonoscopy he was diagnosed with bowel cancer. There was a best interests meeting and we all agreed Palliative care only and no further tests, DNR was already in place.

Dad was immediately referred to the Hospice Outreach Palliative Care Team who would manage him along with the Nurses in the home. At this point they had no idea how long Dad would live. I was told it could be months or years and because of his diagnosis he would automatically continue to receive CHC even though his Dementia related behaviour had much improved. It seems his Cancer overrided the Dementia qualification for CHC.

I would certainly have a word with the GP with regard to Fast Track CHC.
 

Shabba

Registered User
Apr 9, 2016
76
0
Shabba, I am sorry to hear about your mum and can well imagine you are in shock.

It's not pleasant to have to make such important decisions for other people and I am sorry you find yourself in this situation. I do hear what you say about the responsibility feeling so huge and overwhelming. I think a lot of us have been there.

I have to say, if it were me, I would feel as you do: no tests, no hospital, no treatment, and comfort care/palliative care at the current nursing home. They sound like they are providing good care to your mother and although I'd ask about hospice and admiral/Macmillan nurses, just so you know what your options are, if the NH can provide the care needed, that's great.

My FIL was diagnosed with, and treated for, cancer this year. Now that I understand what it entails, I would not wish that on anyone, and especially not anyone with dementia. As your mother is not a good candidate for surgery/radiation/chemotherapy, I am not sure there's any point in putting her through what would be necessary to diagnose her. Even minimally invasive procedures, such as CT scans, an MRI, x-rays, can be upsetting for a person with dementia. I think you're right to think about it carefully.

Your motives are good: to spare your mother unnecessary distress and upset and possible pain, and to honor what she told you about letting her go with peace and dignity.

I don't know how much any of that helps, but I would say that the fact you're concerned enough to think it through enough to post about it, means you're like to make a reasoned and reasonable decision.

Sending all best wishes and lots of support.

Oh Amy, bless you. All of that helps, thank you. Oh boy, just thinking of her having scans/tests fills me with horror, she is off the scale scared having her blood pressure taken! The NH has 4 dedicated end of life nurses so will see one tomorrow to see exactly what they do, in case other options need to be explored, but I feel sure I am making the right decision. Warmth, peace & quiet, dignity, respect and most importantly love, is the most I can give my beautiful mum. Thank you again for your kind and supportive words, love to you x
 

Shabba

Registered User
Apr 9, 2016
76
0
My Dad was already in a nursing home receiving CHC on the grounds of his Dementia. In December following a colonoscopy he was diagnosed with bowel cancer. There was a best interests meeting and we all agreed Palliative care only and no further tests, DNR was already in place.

Dad was immediately referred to the Hospice Outreach Palliative Care Team who would manage him along with the Nurses in the home. At this point they had no idea how long Dad would live. I was told it could be months or years and because of his diagnosis he would automatically continue to receive CHC even though his Dementia related behaviour had much improved. It seems his Cancer overrided the Dementia qualification for CHC.

I would certainly have a word with the GP with regard to Fast Track CHC.

Oh bless you Not so Rosy, what you've been through too. Thank you so much for this, I am going to see what they say. Take care x
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Hi everyone, am in a bit of shock. Mum's 81 (Vasc Dem & Alz) and has been in NH a few months. I noticed in the last 10 days or so she's hardly eating, being difficult with medication taking, and getting more angry, she's normally so placid. So I just put it down to maybe another downturn phase in the dementia. Nurses and carers all noticed this and have kept me updated so no qualms there, they are wonderful. I go in every day and they keep me fully up to date what she's eaten, what upsets her etc.

Last week GP suggested blood tests and he had a quiet word with me yesterday. Said markers suggest malignancy somewhere. I said do you mean cancer, he said it was very likely. No lump in boobs, but to determine it would of course mean xrays, tests (colonoscopy, endoscopy etc). My brother and I have H&W POA and have discussed before "what if" scenarios. Mum is now totally immobile, doubly incontinent (well, has permanent catheter now as bladder doesn't work), doesn't know us, and as we all know the dementia can only go one way. I told Dr we didn't want invasive tests or cause her trauma and distress, I couldn't bear it. It just feels like taking such responsibility, does anyone agree with me? Even if detected/located, what would happen - chemo, radiotherapy, surgery - I just can't see what quality of life she would have. It's beyond upsetting, but feel it's the kindest thing to do. Dr agreed, said he expects to see a marked deterioration over coming weeks, and they would keep her comfortable and pain free in NH, so palliative care. I don't want hospital if it can be avoided at all costs, and the staff are so lovely in NH and they are accredited with Gold standard end of life care, I just feel it's the best I can do for mum.

She is self funding (well we have deferred payment agreement til we sell the house) but does anyone know if CHC should be considered at this stage, or would they feel they need a "definitive" cancer site diagnosis. It almost feels obscene asking at a time like this, but if poor mum goes more than weeks into months, and she should be entitled to it, I thought I'd ask.

I have rambled much more than I set out to do, sorry, I think I'm in such shock and can't believe this is happening on top of everything. But my logical brain knows "somethings going to get her", like it will us all, and in the strangest way I just want her to be at peace and never know the worsening of the dementia. Thank you for listening x


I totally agree with you Shabba.

Huge hugs,

Aisling xxxxxx
 

Shabba

Registered User
Apr 9, 2016
76
0
I totally agree with you Shabba.

Huge hugs,

Aisling xxxxxx

Hello Aisling. You've been there on more than one occasion for me, you are an angel. Thank you for saying that, I value your thoughts. Am dreading what the next few weeks bring, oh am so tired and sad. But hugs from you really mean a lot. Honestly. You are the most wonderful caring lady. My hug right back to you. Take care xx
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
To me in those same circs it wouldn't have been a hard decision. By the time my mother was in later stages I wouldn't have dreamt of putting her through hospital visits and invasive tests - it was difficult and distressing enough for her just to go to A and E to be checked after a fall.

To be honest, given my mother's very poor quality of life, when she was not really able to enjoy anything any more, I wouldn't have thought it at all kind to seek to prolong her life just because it might have been possible to do so. I would have wanted all possible palliative care in comfortable, familiar surroundings.
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Thank you so much canary. Just sat here thinking, even if she went to hospital and was prodded and poked, I'm sure the medics would say they didn't think any treatment would be viable, so why would I put her through that. She is warm and cosy where she is, and most importantly loved, I would feel I had caused her such suffering at the end of her life if I did choose that option, I would never forgive myself. Love and hugs to you and your mum x

Shabba, this post sums it up, for me. I totally agree with your decision. Let her remain warm, cosy and loved. As long as she can also be kept pain free, what better end of life could there be? Best wishes to you all and wishing you strength for the coming days and weeks. xx
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,342
0
Nottinghamshire
I would do the same for my dad if I was in your shoes shabba. It seems cruel to put someone of that age and especially a PWD through all the tests and treatments.

I know it seems a bit mercenary to go for CHC when you're in such an emotional state but anyone with cancer and without dementia would get free care so it seems unfair if your mum does not. Ask.

Best wishes to you and your mum
 

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