1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

GP suspects mum has cancer - CHC enquiry

Discussion in 'I care for a person with dementia' started by Shabba, Oct 20, 2016.

  1. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  2. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
  3. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    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
  4. Shabba

    Shabba Registered User

    Apr 9, 2016
  5. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    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.
  6. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  7. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  8. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  9. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    #9 love.dad.but.., Oct 20, 2016
    Last edited: Oct 20, 2016
    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.
  10. canary

    canary Registered User

    Feb 25, 2014
    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.
  11. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    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.
  13. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    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.
  14. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  15. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  16. Aisling

    Aisling Registered User

    Dec 5, 2015

    I totally agree with you Shabba.

    Huge hugs,

    Aisling xxxxxx
  17. Shabba

    Shabba Registered User

    Apr 9, 2016
    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
  18. Witzend

    Witzend Registered User

    Aug 29, 2007
    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.
  19. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    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
  20. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    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

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.