Struggling with no definitive time scale!

My mum is receiving palliative care but we've been given no real idea of timescales. I'm a person who likes to be in control and understand next steps, the process etc. Mum isn't currently in pain but is sleeping alot for last few days. I want to contact the palliative care team we have access to to discuss what's happening but my Dad doesn't want me to. I'm a single mum trying to support mum and and dad but also think about what's best for my boys (one is currently half way through GCSE exams). Feeling very lost and alone right now.

  • Hello Cariad28

    I'm so sorry to hear that your Mum is receiving palliative care at the moment. Undoubtedly this is an incredibly difficult time for you all and it's natural that you have questions about what the coming days and weeks may hold. 

    It can be difficult to care for yourself when you're supporting so many other people at a difficult time and it's understandable that you're feeling lost and alone. What support do you have in place to help you? I hope that there are some good friends who are able to let you offload in a safe place of support but if you're struggling to find someone to talk with then I'd encourage you to reach out to an organisation called Maggie's. They are there to provide support for anyone impacted by a cancer diagnosis including family. Alternatively, you could call the palliative team, not necessarily to ask about your Mum but to let them know that you are struggling with supporting both your parents alone and to ask them what support may be available in your local area to help you and your boys as well. 

    I can understand that your Dad maybe doesn't want to know the details about how things may progress for your Mum but I also don't think he would want you to struggle so maybe having another conversation with him might be a way forwards. 

    As I've said, undoubtedly this is a difficult time for you all. Please know that there are people here at Cancer Chat who understand some of what you're dealing with at the moment and are here to listen and offer support. 

    Sending you all my best wishes, 
    Cancer Chat moderator 

  • Hi,

    Just wanted to say I know what you mean about the timescale thing. My dad and our family have just had the chat about end of life care as he has cancer and is deteriorating. I wish I knew how long he had as I have children and I want to be there for my dad but trying to be strong for my girls. I live 35 miles away from my dad and dont know if I should be staying with him permanently as his death is imminent or if I should be going to work and carrying on as normal,well as normal as I can. It almost feels surreal as though I'm watching a movie, them It hits me that I'm losing my dad and im in pieces. I feel all mixed up. I think we have to just take each day as it comes but it's so difficult isn't it.

  • Thank you Jenn. I do have some good friends and after another chat we've Dad we have spoken to our palliative team who were excellent.


  • Sorry to hear you are experiencing similar but it's kind of nice to remind myself I'm not the only person going through this! I am 100 miles from my parents and am here for a few days most weeks. You are right we just have to take it all one day at a time. All the best to you and your family at this incredibly difficult time.

  • Hi There, I am sorry to hear how frustrated you feel. I feel exactly the same. My Dad is having palliative care at home. He has been asked to fill out a 'respect' form with his wishes. He has requested that he does not want to go into hospital under any circumstances. I asked the Macmillan nurse about timescales and she said "weeks to small months". We then had another person from the surgery saying that end of life care can go on for years and he may last a long time. I would really like to know what I am dealing with as I have a son who keeps asking about his Grandad and I dont have any idea what to say. So many mixed messages. I know what you mean about feeling alone. I am really starting to feel the isolation and lack of information.

  • Thanks for your message. I definitely think it helps to talk to other people in the same situation. My dad has a scan on June 22nd so maybe that will shed some light on the situation. I don't want to lose my dad but I definitely don't want him suffering for ages either. Anytime you want to chat feel free. Take care.

  • Hi Joey123.

    Im so sorry to hear of your situation and really do empathise, I’m in the exact same one with my mum. She has also signed the respect form and was on home hospice care as we were told 3-8 weeks possibly months back in Nov. My mum is still here today, she is such a fighter but I do have in the back of my head about how long this can go on for. I worry about her quality of life, she doesn’t leave the house as too weak. My dad is her full time carer now and he is struggling with his mental health. I am trying my best to support them both while working full time and living away. It’s so hard. 
    My sister has two little ones, one four year and a baby.  She got some books from MacMillan about end of life to read to him. She just reassured him that Nana is very poorly but is being well supported at home. He is too young to grasp the concept of her passing away but they are lots of resources available for this time including Winston’s wish, which provide books/resources for children with bereavement.

    I don’t know about you but it’s the uncertainty and not having any control that is really consuming me. I still feel devastated I am going to lose my mum but I just want her to not be in pain and be as comfortable as she can.

    I hope this reply helps in some way and send you all my thoughts with your dads. Cancer really does suck.