our journey approaches the end

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We are not in a good place atm. Due to the cancer being too advanced and his unable to swallow, a NJ tube has been inserted, and his been allowed home, as he wished. It's painful watching him sleep all day, his a shell. It is ethical to put a tube in knowing this will just prolong his life expectancy, I don't know. That's the thing, I don't know what's right, for who, for him, I don't know. I feel I've sunken Into a dark place, can't be bothered with anything. Just sit and watch him try, hold his hand, It's just so hard. People just are getting on with their life, while ours has just stopped. No more days out together, no more trips away. It's just gone, it's all gone. How do I carry on, I can't, I don't want to

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  • Posted

    It is indeed a hard thing, but do make sure, as far as you can, that he is kept comfortable.   Hospices tend to be the best paces at understanding pain control.

    ?I do not know whether he made a living will, expressed his wishes about this stage of life or whether you have a power of attorney for welfare, but it would be worth discussing the plan for treatment with the doctors.   Sedation is a very kind treatment at some stages, so sleeping is probably not such a bad thing in the circumstances.

    ?You sound like you have been a valiant stalwart looking after him so well.   Grief is the price of love, isn't it.

     

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  • Posted

    Hi Tina - Iknow exactly how you feel as I came through all this myself with my father.  He had advanced oesophageal cancer,chemohad to stop due to platlets falling low and had 5x weeks intensive radiation all with NG tube in.  Unfortunately they decided to remove the tube and insert a stent and the only way I could describe the weeks that followed was hospital, fighting with staff who insisted he could eat and swallow (after 5 x months of tube he couldnt eat),  Yes at times I thought exactly the same that the feeding tube was prolonging his agony but after they removed it, it was unbearable watching him starve to death and them trying to force feed him.  It was like someone put a pause switch on my whole families life.  I wish I had seen about help sooner ie speaking to experienced counsellers but I closed everyone off.  The only way for me to describe the last few months of oesophageal cancer is hell on earth. I know its hard but try and keep positive for his sake,under no circumstances allow them to remove the tube as being able to even get fluids and paid relief into him is a blessing.  You need support network and please dont isolate yourself.  My father passed away in April this year and I wish I hadve fought the doctors decisions more - when they removed the tube my father was sent home effectively to die with a bottle of morphine - fight for your loved ones right to be treated like a human being and please please dont ever allow that tube to be removed as I had to see my father cry and beg me for pain relief and him unable to swallow and I had no way of administering it to him.  You are in my prayers x 
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    • Posted

      Sadly my husband passed away 2 weeks ago in the hospice. I'm lost and carrying on without him brings bad thoughts. I try to get dressed in each day, but find myself living in pjs and it's an effort to even take a shower and wash my hair. I don't want to see anyone and what can they do anyway, nothing just fuss about and I don't want that. I have arranged the funeral for the 24th and that was hard omg. I'm in a daze all the time and can't seem to be bothered with anything sad 😢😢

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    • Posted

      I'm sorry to hear that - I too felt like you and just wanted to curl into a ball in bed and not see anyone. The only thing that kept me going was that my father was pain free and wasn't suffering anymore. I went to see my doctor and thankfully now I can take each day as it comes. Good days and bad days and I talk about my father to everyone which I find helps and it brings back wonderful memories. Don't get me wrong- I have days that I cry so hard that there is a pain in my chest but it's about taking each day as it comes. My heart goes out to you and my deepest condolences to you and your family x

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    • Posted

      Grief is the price of love, isn't it.   Do not worry about the rights and wrongs.   You have to deal with it in your own way and jist out one foot in front of the other.   The hospice staff are invariably kind and helpful;  they will look after you afterwards as well.

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