Medical intervention - advice needed please.

Discussion in 'Middle - later stages of dementia' started by Demonica66, Feb 22, 2016.

  1. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    Hello to you all. I wonder if any of you can give me advice please? I am waiting to hear from the Court of Protection as to whether I have Deputyship for my Mum who has Vascular Dementia. I have no siblings, father or close family. Mum had a scan and sigmoidoscopy recently, which showed that she had a huge rectal polyp and a suspect area on her bowel which is probably malignant. During the hospital consultation, I was also informed that she had probable Acute Myeloid Leukaemia in June '15, which I knew nothing about, and for which, she has received no treatment or further investigations! She is now due to go for a colonoscopy under sedation in 48hrs. I am taking her and staying with her, as she will not have it done otherwise. Mum has no short-term memory and she has forgotten everything from the last 20 years. She is unable to read books, keep track of film or TV or do anything that once gave her pleasure. She is also now incontinent and her mobility is severely compromised. She is a retired highly intelligent teacher.
    If her tests are positive for cancer, I am worried that they will decide to operate and do not want to put my Mum through this but I am worried that I will have no say in this. Mum has always stated that if she 'lost her mind' she would not want to go on, and she will not cope with a stoma for a colostomy or ileostomy. She would be mortified. Her GP won't discuss things with me, I was not informed of the leukaemia, and due to patient confidentiality, without a POA or Deputyship, I am really concerned that they will not involve me in my Mum's care taking into account her best interests. Do I have any rights? How can I find out any more? I am lost! Any advice would be really gratefully received. Sorry about the long post. Thank you, in advance.
  2. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    You say the GP with not discuss your Mum's condition with you but you also refer to a hospital consultation when they did inform you of her condition. As you are taking her to the tests I would try and discuss things with the people at the hospital, start the discussion by referring to what you already know, don't mention the deputyship.

    You say you are waiting from the COP to see whether or not you have deputyship, was the application for financial affairs or did it, or a separate one, include welfare?
  3. min88cat

    min88cat Registered User

    Apr 6, 2010
    Hi there.

    My husband didn't have LPA (for health and welfare) for his mum, but was noted as next of kin and her carer on all medical notes. We never had any problems with medical staff discussing things with him, as it was obvious that she was unable to understand what was being talked about and by then was unable to make decisions. When she suffered a massive chest sepsis, the consultant freely discussed his recommendations regarding DNR with my husband and was quite happy to accept hubbie's decision on this. Be frank with the consultant and express your concerns, they are only human after all!
  4. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    Sorry to hear what your mum and yourself are going through, bad enough having dementia .
    If they havent done anything about mums leukaemia than probably wont do anything regarding bowel condition. If it is bowel cancer wonder if its related to leukaemia , most probably.
    They may do minor surgery to keep mum comfortable if ahe was going to obstruct.
    Thinking of you at a v sad and stressful time. Xxx
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #5 Shedrech, Feb 22, 2016
    Last edited: Feb 22, 2016
    Hi Demonica66
    Such a challenging situation for you both.
    I agree with the others - go in with the assumption in your own mind that they will discuss matters with you and that you will freely discuss with them, and I suspect that that is what will happen - especially as it is in their interests that your mum is as calm as possible for the colonoscopy
    I picked up on this
    which effectively tells everyone that your mother trusts you and herself wants you to be involved - if necessary point this out to the medics - along with this
    I wish you well for the hospital visit
  6. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    Thank you all so much for your advice. I shall speak with the hospital consultant about this. I just feel so helpless and ignorant. I feel as if my Mum's wishes are not being considered at all. The COP Deputyship is for social, financial and health Deputyship. It has been an arduous procedure fraught with bureaucracy, error and confusion. I will do my utmost to speak with the consultant in due course. Thank you all. I really appreciate your advice.
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I have CoP deputyship, although not for Health and Welfare as I was told that the CoP very seldom grants this unless there are unusual circumstances. Nevertheless, when mum had her cataracts removed and recently when she was in hospital with pneumonia there was never any problem with the doctors talking to me and considering my views. Even if you have H&W CoP/POA it doesnt automatically mean that views will be acted on. It is still the doctors decision and they can over-ride your wishes if they dont think them appropriate, so dont worry that you dont have H&W CoP. Im am sure that you will be involved in any best interest decisions.
  8. Mountain goat

    Mountain goat Registered User

    Feb 14, 2016
    Hope it went OK. I feel for you.

    The GP suspects mum has bowel cancer but the specialist today didn't want to investigate further saying if she had anything then surgery wouldn't improve quality of life as she has terminal Alzheimer's . I did persuade him to try to do CT scan but doubtful she will keep still for this. I don't yet have deputyship but I did persuade him to try to investigate. I just now need to decide what or if to put her through any investigations . He said surgery would be cruel. It's just the way things were said. It was very brutal. Even my partner thought so too.
  9. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    I don't think you need fear your Mum will be pushed into having surgery or other medical treatment that wouldn't give her a better quality of life and could even be quite risky for her.

    My Mum was in a similar position to your Mum. Mum might have been suffering from bowel cancer - the MRI scan she had eventually proved she wasn't - and the doctor talking to us about the options made it very clear that surgery wouldn't be in her best interests, she'd be given palliative care. We were happy with his advice, particularly as we'd been told Mum might have no more than months left.

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