Dad dying alone in hospital - pancreatic/biliary tract cance

Hi all,

It's not like me at all to reach out for support and I'm supposed to be the "strong" one in my family, so posting here is a big step for me.

Dads currently in ICU where he has been for the last 2 weeks. He was diagnosed with biliary tract cancer in May and has many underlying issues. He had 2 laparotomies in the last 2 weeks (following bladder damage from previous cancer 10 years ago) which means his chemo has been put on hold, and it's the reason he's still in hospital. We got told today that the cancer has now advanced to a stage where palliative chemo is no longer an option and he is in his final days/weeks. He doesn't know yet and has been fighting so hard up until this point. I can't even begin to put into words how deeply painful this is. He's in so much pain following the laparotomies, from the pain of the tumour itself in his liver and he is so jaundiced just looking at his yellow eyes brings me to tears. The most difficult thing is coming to terms with the fact that he will most likely die in hospital alone, without anyone with him. We have such a huge family and he is so loved by everyone, and we can only visit for an hour per day and it's just tearing me, my brother and my mum apart that he's just left there to suffer in pain by himself.

Has anyone else been in a similar situation? Not being able to be there and watching a loved one slowly deteriorate from afar without being able to hold them or be there for them? I feel so helpless and alone and my family relies on me to be the pillar of strength. I can't even imagine the fear and sadness he will be feeling there all alone.

  • My darling father left us early this year, 6 weeks after diagnosis. I kept it together until he was no longer with us. He had bile duct cancer and I can't believe we never knew. My heart was shattered into billions of pieces and that is still the same  now. Within a month he became seriously ill and we were told it would be days, weeks but unlikely months. Within two weeks he was not here and like you we were not really able to see him when in hospital.  He wanted to come home and we arranged that and I looked after him with help from Marie curie, my angels, and district nurses.

    I tormented myself with how he was feeling, but now I know I will never know. I told him every day how much I loved him. 
     

    I am not sure that writing this will really help you, but just felt I could not scroll by. 
     

    The best advice I got, is be kind to yourself.

  • I could hardly bear to read your post as it is so clear how much pain you are in and how desperately you love your Dad. I'm not sure if this will be any practical help but...

    I am/ was the strong one and watching my Mum die after being given the all clear almost dissolved me. Give yourself permission to lean on others and get support from people like MacMillan and Cancer Research- even if it just someone to talk with. No-one can relentlessly be the strong one.

    Obviously I don't know the specifics of your Dads care but I am assuming he can't be moved to a hospice or similar. So if he has to stay how can the hospital help you? Can he have extra visitors? Can he have iPad/ FaceTime support? I made a playlist for my Mum as the noise of the hospital kept her awake and putting in her headphones helped her. It is all the little things at this time because you can't fix the big things.  
     

    Can your other family send him voice messages, or give you letters and photos for him? It is awful to imagine them alone and in pain so get as much support as you can from the palliative team to ensure his pain is managed. 

    I tore myself apart with my Mum was dying, screaming into the pillows and sobbing on the floor. I used a guided mediation from Tara Brach on death and grief to get to sleep at night. Letting go of your ability to fix things is so hard but you can't fix this this- you can only do as many small things for him as you can.

    I wish you and your family so much love x

  • That's all really helpful advice, thank you. He's still in ICU and hooked up to bladder irrigation so he's stuck there for now. The doctor told us yesterday that the cancer is now terminal and no further chemo will be offered. They told us before they told him, and I had to go and see him afterwards and he was still hopeful that they will continue treatment. It completely destroyed me looking into his yellow jaundiced eyes knowing that there won't be any further treatment, and I'm now so angry that the doctors have placed this burden on us - telling us he is at end of life without telling him, or offering the chance for us to be there with him when they tell him. I've been trying to arrange a further appointment for us to be there when they do tell him but trying to track down doctors is impossible. It's like a nightmare that just doesn't end.

    He has no desire to listen to music, he doesn't want to keep his phone on him. He's just existing there and it's horrendous to watch as he had such a huge hunger for life and would find joy in the most mundane everyday things. I like your idea of bringing him photographs and letters, especially since we can't all be around him. 

    I'm so sorry about your mums passing. It honestly is an awful ruthless disease that robs you of everything. Apart from my uncle - who has been a huge support - I haven't really been leaning on any of my family or friends but this forum and your message is a huge comfort - just speaking to someone who understands the depth of pain is helpful. Thank you x 
     

     

  • Checking in on this thread and wondering how you are. How is your Dad? Xx

  • Hi Marymck,

    Thank you so much for checking in. Dad sadly died a few days before Christmas after a very difficult and painful month in hospital. Thankfully his final hours were relatively peaceful but the whole experience still feels like a nightmare that I can't wake up from.

    It's a very difficult adjustment. Life around you goes on but you're stuck in your grief. Lots of anger, sadness, resentment whilst trying to keep it together at work. I'm good at wearing a brace face and pretending I'm fine but inside I'm screaming and just want to hide away. 
     

    How are you doing after your mum passed? Sending you lots of love and strength xxx

  • Oh- I'm so sorry. There is nothing anyone can say to make this any better. I think there is a type of pain that you have no idea about until you experience it. For me it was the loss of my Mum and I'm sure you must be feeling it now over the loss of your Dad. 
     

    I am two years further in the journey. I am still here. There are some days I wish I wasn't and I have learned to accept those days and sink into the need to sob and wallow in the sadness. Then I put the kettle in and carry on. I understand your feelings of anger and resentment. I feel so much rage. No towards anyone but at the horror and unfairness if it all. I suppose losing a parent immediately makes you feel like a child again and sometimes I do want to 'throw my toys out of the pram!'

    Nothing 'makes it better' but I have found comfort in some books. If you are a reader 'It's ok that you are not ok' by Megan Devine was a saviour for me. Also 'grief comes in waves' on The Loss Foundation website is a very helpful piece of prose.

     

    I too am the 'brave face' person but you can't rely on that strategy to get you through this. Do you have a lovely friend you can turn to?

    Sending you much love? 
    Mary xx

  • You are completely right about not being able to understand this level of pain until you've experienced it. I have a friend who has been really supportive, but she has her own family and troubles to deal with. Most of the people closest to me barely mention anything about my dad or check in, but still invite me to social gatherings and talk about their lives as if everything is normal again and I find it so frustrating and I find myself really resentful that no one understands. My mum has never been very emotionally aware/supportive so she finds it frustrating when I talk about my grief, and will turn it back to herself so I don't bother saying anything. Ironically, my dad was the person I would go to for emotional support and I now feel completely lost and alone without him. It feels like I'm on autopilot most of the time - I just go through the motions like a robot with no real feeling or emotion. I have started therapy though so I hope that will help me process some of the trauma I witnessed in his last month. 

    I'm sorry that you still have those moments of intense grief - it never goes away does it. How has your grief evolved since your mum passed? Do you have support around you? Thank you for those book recommendations - I will definitely be ordering them! Meditation does work for me - I found a fantastic guided one right after dad died about grief and it felt like I was suddenly so connected to him. 
     

    thank you again for checking in - I really means a lot.

    Nilly x 

  • I'm glad you have found some mediations to help. I used to put earphones in and listen to Tara Brach mediations which were like first aid. The grief definitely changes and when people says it gets easier, you just get used to it really.

    it must be really hard if you are expected to attend social events but act normal. I think some people don't know what to say or how to react so they carry on as normal. It is hard not to be really outraged about it.

    I completely get your 'autopilot' reference. I still do t know how I managed to carry on working, sort my children and organise Mum's care and funeral but I did. I think my brain just shut off the emotion and carried on with the practical tasks. 
     

    Hopefully speaking with a therapist will give you a space to talk. That's a wise move. Am thinking of you x