New to Dementia Talking Point: support for dealing with dementia and cancer

Discussion in 'Caring for a person with dementia and cancer' started by SerenaS, Nov 16, 2018.

  1. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,268
    London
    #1 SerenaS, Nov 16, 2018
    Last edited by a moderator: May 29, 2019
    Are you caring for someone with dementia and cancer?

    A new sub-forum for carers of people with both dementia and cancer is coming soon on Dementia Talking Point.

    coming-soon-1898936_960_720.jpg

    It aims to provide carers of people with dementia and cancer with a place to connect with others who understand the unique challenges they may face and receive practical and emotional support. Carers will also have a chance to share their experiences.

    There will be tailored information for people who are affected by both dementia and cancer.

    Over the coming months, we will be planning to host Q&As with experts in dementia and cancer, who will answer your questions.

    We are piloting this area on Dementia Talking Point to see if it is helpful and will be asking for your feedback and ideas.

    I’ll leave this discussion open if you have questions or comments and will have more news to share soon.

    Thanks,

    Serena
     
  2. Lynnpin

    Lynnpin Registered User

    Aug 11, 2011
    30
    Tyneside
    I think this is a great idea and wish it had been around earlier.

    My beautiful partner, John, died in March this year. He was diagnosed with terminal cancer but the operation he underwent to remove one kidney, ureter and bladder cuff (Nephroureterectomy) unfortunately brought out an underlying Lewy Body Dementia that seemed to come on rapidly.

    I felt useless in two ways and I still cannot decide which was worse.
     
  3. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,268
    London
    Hello @Lynnpin

    I'm very sorry to hear about your partner John. It sounds like it was a difficult time for you, as the cancer diagnosis then brought out the rapid progression of dementia. From what has been posted on TP, many other people who care for someone with dementia and cancer have similar feelings.

    I hope that the project will help support many people who care for someone with dementia and cancer. You are very welcome to participate in discussions when the new sub-forum launches as I imagine you have a lot of experience that could be helpful to others.

    Kind wishes,

    Serena
     
  4. Lynnpin

    Lynnpin Registered User

    Aug 11, 2011
    30
    Tyneside
    Thank you Serena for your kind words. They are much appreciated.

    I joined this forum originally because my mother was diagnosed with Alzheimers. Two weeks ago she had a severe stroke and I was summoned to the hospital on the second night and told that she wasn't going to make it. She did pull through but the prognosis is not very encouraging.

    Caring for two people and running back and forth between both of them has been very hard and the guilt when leaving one for the other immense. The last thing I expected was that John would go first. Grieving when my mother didn't even know I was grieving made it that much harder to bear.

    It's so cruel. Why do we need two diseases when one is more than enough!

    Already this suggests another Talking Point thread: Dealing With Dementia and Stroke.
     
  5. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,643
    [Thank you for this @SerenaS I am likely to post here a lot. Dad has oesophageal cancer and that I can deal with. The dementia is another thing altogether and I find it much harder to cope because of this. Caring for a person who has no idea that they are ill just makes everything twice as difficult.

    Every time dad has an appointment he thinks that he is finished with hospitals and as fit as a flea whereas I just feel completely at a loss and having no time frame does not help.
     
  6. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,268
    London
    Hello @Duggies-girl

    It sounds like you're handling a lot of difficult challenges and I can appreciate the difficulty of supporting someone who doesn't know that they are ill. I really hope that this area will help with providing you with some support and connecting you with other people in a similar situation.

    It may be helpful to click on this >watch forum< link as it will then alert you to when there are new discussions in this part of Talking Point.

    Best wishes,

    Serena
     
  7. Camberite

    Camberite Registered User

    Dec 1, 2015
    10
     
  8. Camberite

    Camberite Registered User

    Dec 1, 2015
    10
    Hi Lynnpin, it is so very hard. My husband Michael started with mild cognitive memory loss in 2015 which was assessed at a memory clinic after it was highlighted during a general health check. His cancer was diagnosed at a similar time. After two operations, one keyhole for bowel cancer (primary) and a major operation on his liver to remove the cancers. We were told at the time that these operations would escalate his condition and indeed they did to the point of early onset Alzheimers and then full blown Alzheimers. The thing is you were damned if you did have the operations and damned if you didn't! He was 72 last March.
     
  9. Grable

    Grable Registered User

    May 19, 2015
    167
    Hi Duggie's-girl

    Sounds familiar! My mum had oesophageal cancer and vascular dementia. She did know she was ill, and with the first diagnosis of cancer told the doctors that she didn't want anybody - not even her - to know what stage she was at, nor did she want any treatment. Then things went downhill with both the dementia and cancer. What a nightmare for all concerned!
     
  10. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,643
    Hi @Grable Dad was diagnosed in April at Stage3 with nodes involved. As he was so frail at less than 9 stone and looking like a skeleton I thought he probably would not have much longer and decided to make things as nice for him as possible.

    Nearly 8 months later he weighs almost eleven stone and looks better than ever. This is a man who has had no treatment other than stents and he is eating like a horse. The dementia has not improved although dad is very happy. Yes it is a nightmare and I have no idea when it will end..
     
  11. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,268
    London
  12. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    #12 molliep, Dec 10, 2018
    Last edited by a moderator: Dec 10, 2018
  13. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
  14. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    We have created a new thread for sharing useful information and resources with others affected by both dementia and cancer.

    I have shared a link in this thread to a helpful guide developed by Macmillan and DementiaUK specifically for family members and carers of people with dementia and cancer.

    Do you know of any resources that are particularly helpful? Feel free to share them here: https://forum.alzheimers.org.uk/thr...rces-dealing-with-dementia-and-cancer.113241/ :)

    Best wishes,
    Mollie
     
  15. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
  16. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Hi everyone,

    We are having an Expert Q&A session on dementia and cancer on the 30th January 2.30-3.30pm with Lorraine Burgess, the first ever Macmillan Dementia Nurse Consultant.

    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; 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 do so here or if you prefer you can send your question to talkingpoint@alzheimers.org.uk.

    Best wishes,
    Mollie :)
     
  17. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Hello everyone :)

    Today we had a Q&A on dementia and cancer with Lorraine Burgess, a Macmillan Dementia Nurse Consultant from the Christie NHS Foundation Trust in Manchester. She gave some really detailed and helpful answers on topics that have come up previously on Talking Point relating to both dementia and cancer.

    If you'd like to read her responses you can do so here: https://forum.alzheimers.org.uk/thr...-–-wednesday-30th-january-2-30-3-30pm.113825/

    We hope it's a useful resource,

    Best wishes,
    Mollie
     
  18. molliep

    molliep Researcher

    Aug 16, 2018
    79
    Female
    Leeds
    Hi everyone,

    We'd really love to hear your feedback on the forum ‘Caring for a person with dementia and cancer'.

    We are looking to find out more about your experience of this forum, including the elements you find helpful, and the elements you find less helpful, in order to better support carers of people with both dementia and cancer. Your feedback may help to improve this space.

    If you'd like to help, let us know what you think about the forum (and its activities) and any suggestions for improvement by completing the survey here.

    You must be aged 16+ to complete this survey.

    Best wishes,
    Mollie :)
     
  19. SherieMJ

    SherieMJ New member

    Feb 5, 2019
    1
    My mum has Vascular dementia and terminal lung cancer, I care for her full time and a group that covers both is a great idea. As mentioned before the cancer we can deal with but the dementia is a daily struggle.
     
  20. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,336
    Merseyside
    Welcome to TP @SherieMJ
     

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