1. Griz

    Griz Registered User

    Oct 27, 2016
    1
    Hi,

    This is my first post on this forum and am looking for advice;
    My Dad has had Alzheimers for about four years now, he's slowly deteriorating but still manages to live alone with a good care package in place. He has now been diagnosed with an aggressive cancer on the side of his face and been given 9 months without surgery. The surgery has no guarantees and may well cause him more strife than good as explained. It's a 14 hour operation.
    On getting him home from the hospital I spoke to him at length about his condition, with the usual difficulty of not knowing how much he really understood. He was absolutely adamant that he didn't want surgery. I'm really struggling with it all.
    Given all the evidence and information, had it been me, I'd have made the same decision.
    He's now facing a very uncertain few months with palliative care being the way forward.
    I guess I want to know if other people have been in this position and what advice they would offer?
    Getting a straight answer from him on anything is nigh on impossible these days and I feel the burden of responsibility of doing the best for him is weighty.
    As I said, any advice greatly appreciated.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @ianaddyadams and welcome to the forum. I hope you find this to be a friendly, informative and supportive place.

    That is a tough situation for you both. I care for my wife and I know that if she were in your Dad's situation I would go with her wish. I also know that she would be likely to refuse the surgery. Major surgery holds great risks for a person with dementia and so there is always the possibility that trying to solve one issue will create a worse situation. If your Dad still has capacity then it is up to him.

    I know there separate threads concerning people living with both Dementia and Cancer and you can find them with the following links
    https://forum.alzheimers.org.uk/thr...-for-dealing-with-dementia-and-cancer.112616/
    https://forum.alzheimers.org.uk/thr...-dementia-and-cancer’-an-introduction.112767/

    Otherwise, I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. Lawson58

    Lawson58 Registered User

    You don't say how old your dad is and if he has any other health problems because I think those two things will make a big difference to what anyone's decision might be. The thought of such lengthy surgery in an aged person is a pretty scary thought, especially when you can't be sure of the outcomes.

    A friend's mum is very elderly, has dementia and breast cancer and the family has decided to abide by her request of no surgery.

    This is such a difficult time for you so will be thinking of you.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Griz
    what a challenging situation for you and your dad
    this isn't something I have faced ... I believe, though, that I would have honoured my dad's decision if this had happened .... on the understanding that the medics make sure all aspects of palliative care be put in place, certainly pain control when needed
    maybe contact your local hospice and have a chat with the staff there
    and consider how Macmillan nurses may help, and chat with your GP about a referral to Marie Curie nurses
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,598
    Hi @Griz my dad was diagnosed 13 months ago with advanced oesophageal cancer. He was at the stage where he was unable to swallow anything other than liquids.

    We listened to his oncologist who advised that chemotherapy would not be suitable for dad aged 88 and very frail but palliative care would benefit him more.

    She was absolutely right and dad very quickly received a stent so he was able to eat again. He regained all of his previously lost weight and is very happy in himself.

    I'll be honest and say that we have just followed any advice given by dad's oncologist. Dad would agree with anything a doctor said and I would rather take the advice of a medically qualified professional who knows more than I do about the subject.

    I don't feel guilty and neither should you. These are difficult decisions to make and we do our best.

    My dad's oncologist made the right decision for dad, I realise now that chemo would have been awful for dad and probably made his remaining time miserable.
     
  6. molliep

    molliep Researcher

    Aug 16, 2018
    78
    Female
    Leeds
    Hi @Griz

    Welcome to the forum, I hope that you find this a supportive place.

    We are holding an expert Q&A tomorrow 3-4pm on the dementia and cancer sub-forum. It will be hosted by the first ever Macmillan Dementia Nurse Consultant, Lorraine Burgess, who supports people affected by both dementia and cancer and their families.

    Lorraine’s unique role involves working alongside cancer specialists and nursing staff helping them to understand the needs of those with dementia and co-existing cancer; working in the community with health professionals in complex cases involving cancer and dementia; and supporting people with dementia and cancer and/or their family with one-to-one help as well as post-diagnostic education, advice on future planning and emotional support.

    If you'd like to ask Lorraine a question, you can post it in the thread in advance here, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask on your behalf.

    Hope this helps,
    Mollie
     

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