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Not long left - waiting and guilt

judemily
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What a rediculous first post...

My husband was first diagnosed with cancer a long 6 years ago. Last year he was told there was nothing more they could do and in April he was told he had a few short months left to live.

Now it's the first of September and things are hard. My husband's deterioration has been vast and if I'm honest I didn't expect him still to be with us now. Even the nurses and doctors are surprised and put it down to sheer determination. He surely can't have long left now. And that's what I keep thinking. Not long now.

The thing is, he's 45 and I'm 31 and we have children aged 7 and 4.

He's become very insular. He can see nothing beyond himself. He refuses medication. He won't follow medical advice. He's made a decision to go out hard and that's what he's doing. He's in pain, all the time, and it's written all over his face. But he won't up his pain meds because he doesn't want to sleep. He's adamant he's not scared (that I could understand). He sees only perserverence and not the impact this is having on me or the children. My eldest "loves him, but not like I used to". My youngest said "Daddy's poorly, he's a monster now!" are these the memories we are to live with? I'm sorry. I'm trying to safeguard the wellbeing of four individuals in our home and he sees only himself. He won't have a couple of days in hospital to give me and our boys a bit of respite. He won't have carers in the house. I must meet all of his needs single handedly. I find him so selfish in death. So yes, I feel guilty. But I also feel tired, I'm scared for my children, I don't know if after the fact I can make this better. I want this to be over. It could be tomorrow or it could be weeks and weeks and weeks. I really don't want my children to hate their father but he's so mean and short tempered I think it's already happening. And I have no idea what to do.

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    My heart goes out to you ... you must be overwhelmed at the moment and I can just imagine so many different emotions going through your mind ... there's no easy answer and itsee so sad for your children ... I always remember the saying 'who cares for the carer' macmillan have a helpline for people and carers who need to talk and may have some advice ... 

    Try an tackle one problem at a time and may be have a little quiet chat with your kids to explain that daddies in a lot of pain and it makes him grumpy but he does love them too ... I have found children are stronger then us adults and don't seem to dwell like we do .. honesty with kindness helps them ... when I was 7 my grandad died suddenly and every one told me a different story away/in hospital etc and a little friend told me "your grandads dead" I'm 63 now and still wish I'd been told the truth at the time , although trying to protect me , it caused much heartache through the years 

    Thinking of you and big hug xx

     

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    Hi judemilly,

    Welcome to the forum - that's one hell of a first post! 

    This may be harsh but, writing as both a cancer patient and as a Dad, your first priority has to be your children. Don't feel guilty, emotional blackmail is a terrible thing. 

    If he won't have carers in the house and if he won't take painkillers fine, just tell him that you and the boys are going away for he weekend as you all need a break and let him sort out his own care arrangements. If that is impossible, can you get the boys away for a break? Maybe he needs to confront the reality of his situation. Like it or not he needs you, but so do your sons and I'm sure he doesn't want them to remember him as an ogre. 

    His actions and inactions seem utterly selfish with no consideration of the impact on his loved ones. Probably not his intention, but that's how it comes across. 

    Is there anyone you can ask to talk to him that he might listen to? Family, friends, a priest/vicar/minister/rabbi/imam, MacMillan nurse, GP or whoever? 

    Best wishes

    Dave

  • Offline in reply to Chriss
    Firstly, thank you for responding. I've always been very honest with the children. My youngest is a little too young to comprehend everything that is going on but my eldest I feel understands everything. I've always felt that honesty, transparency and autonomy are very important as a parent and as a person. So they know (to a degree of their understanding) everything I can tell them and I've always supported them to make their own choices regarding who, how and when they share any of this information or how they want to approach things. Even their belief systems regarding death and what comes after is up to them. I offer choices but will support whatever they choose to believe or put their faith in. I think my children believe me when I say that he loves them, but I also think they have a hard time marrying his actions and reactions to that emotion. I certainly don't want them left with the idea that this is what love is. Because it's not. I am lost though and I can't help but feel that in order for my children and I to find light, sunshine and happiness in our lives again that this part of it needs to be over. So we can rebuild and look for the sunshine. But what kind of wife is eager for the death of her husband? I often ponder whether I am a bad wife in order to be a good mother? Or a bad mother in order to be a good wife?
  • Offline in reply to davek

    Dave thanks for writing back.

    I have a very good relationship with our McMillan nurse. My husband however if less engaging with her. She made the mistake of suggesting he had a syringe driver put in because we're not sure what he is and isn't taking because he allows minimal input. He thinks the syringe driver is an attempt at keeping him "docile and compliant" in order to effectively put him down.

    Now I'll be honest, my husband has never been the easiest man to live with but I love him! That being said whether it's oxygen deprivation as his lungs fill up, movement in his brain met, toxins from liver and kidney failure or some side effect from the minimal medication he is taking he is now the embodiment of almost every negative personality trait he has and has left behind none of the sweet, loving, shy and kind person he once was. Maybe that's why I feel guilty. Because I don't even know if it's him in there anymore.

    Am I to abandon him now? After 6 years of cancer? Because his illness has taken everything of him already except the beating of his heart? I really hate cancer. I'm selfish too sometimes. I reel at the idea that cancer came into my life at 25 and has controlled it for 6 years and why at 31 is my life even like this??? I didn't sign up for this ***. But walk this path I will.

    Ok... calm down... in all honesty the boys go back to school on Monday. That should relieve at least some pressure for them and me. I don't want to run away, even for a weekend, I want to support him in the death he wants, even if it's not what I want. I just want to save my children and have enough left at the end to pick them back up and move on.

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    Hello Judemily,

    You are one amazing woman. I understand your feelings of guilt because basically the same thing happened with myself and my Dad. It was horrible and I had such guilt. I didn't want to see him or talk to him after a certain point. He was verbally/emotionally abusive. Would not follow doctors orders, take meds or do anything that would have helped.  My mom waited on him and he was mean to her.   He's gone now and it's taken some years for me to remember the good in him. But, I do, I can look at pictures and remember good things.  

    Please take davek'd advice! You have to think of yourself and your health.  Go to family counseling if possible (you and the kids) I think that would be a great help to you being able to cope.  

    I'll be praying for you.

    Laura xx

     

  • Offline in reply to judemily
    Hi I remember when my Dad was dying he had been in and out of hospital for years. In the end he was in hospital because he had fallen and broke his hip. He would not do any physiotherapy or get out of bed. He was in a lot of pain and became very abusive. I consoled myself with the thought that actually my Dad had died a while ago and this was his body hanging on. Could you just arrange for carers to come and tell him that you need their help The way you are feeling is not unusual no one wants to see our love ones suffer.

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