Hi- caring for terminally ill mother

  • Posts: 1
    20/11/2018  16:26

    Hi my name is Louise and this is my first week off work caring for my terminally ill mother who has mesothelioma (an agressive cancer of the lining of the lung)

    I am not currently staying overnight but will likely need to fully move into hers soon, at the moment I am between my house and hers

    My work are being very understanding, i have acrued 5 weeks annual leave so I am taking that which will lead to Christmas time then I will likely need to take unpaid compassionate leave if things take longer than that.

    My mother in the last 2 weeks has gone from getting out independantly to the shops over the road with a walker and getting up stairs to barely eating, drinking less and sleeping around 20 hrs/24. She can still transfer independantly and walk a few steps but having worked with the terminally ill I think she will be completely bedbound in the next 1-2 weeks. Fortunately she is rarely in pain and her breathing is manageble at the moment. 

    Looking forward to connecting and sharing support with you all in this difficult time. 


  • Posts: 21
    21/11/2018  14:06

    Hi Louisebt,


    Welcome to the Community.I am sorry to read about mum's diagnosis and prognosis and how rapid the changes have been. It is good to read that she is not currently feeling any pain. I am hoping that other readers will be able to share their experiences with you and provide you with valuable support. But I also wanted to make you aware that the Support Line is always available if you need a listening ear, either by phone or via this community.


    Please keep in touch and let us know how both you and mum are doing. Take care.


    Brigette- Support Line Officer. 

  • Posts: 9
    23/11/2018  16:38

    Hi Louise,

    While you can, make sure you have all the necessary phone numbers you may need for when it becomes harder to manage the time with your mum. I mean district nurse, palliative nurse, out of hours gp who is aware of your mums condition. Also to make sure you have plenty of supply of medication for when these agencies arrive at your mums house. Even phone numbers of family members. Sometimes in case of an emergency, your mind can go blank and you can forget simple phone numbers you have always known.

    Wishing you the very best in this tough time.

    A little something me and my sisters enjoyed when my mum was in and out of sleeping was singing all the awful songs she used to sing to us or round the house as kids. They were Barry Manilow, Neil Diamond and the rest. I say awful, but they're such happy memories now! x

  • Posts: 3
    27/11/2018  06:23

    Hi Louise It sounds a similar situation to how my father had been in his final phase. You are incredibly brave supporting your mother at home and after initial concerns I am glad my mother and family were able to care for my father in a comforting & caring way. Do not be afraid to ask for any assistance from Marie Curie. They were great in offering respite breaks for my mother or staying overnight to watch over my father whilst she slept. Good luck Garry

Reply