My dying son is 'bored'

I'm single father to an adopted 18yo son, we were told about a month ago that after a long battle to bone cancer we are out of curative options. He's had a difficult life and hasn't been able to keep any meaningful friendship after his diagnosis. His relationship with me isn't bad at all, but he has a hard time sharing any emotion or feeling with me, we can't really talk about serious matters. 

He has mood changes and often says terrible things to me, it breaks my heart but since I have been able to take it less personally it has got better for me and also he would often apologize or come back from his room to check on me after he has been particularly rude. At times I'm so hurt but manage to give him a good smile and tell him not to worry, so he can go to sleep without feeling guilty. 

I'm able to be with him 24/7, which is a blessing given the care he needs (he had his leg amputated, chemos, lung surgeries) but it has taken a toll on me as it's been two years of isolating myself from family and friends. They have been great to me but there are many things of this battle that they will never been able to understand, or that you don't share as they are part of the intimacy of your patient, I'm sure many on this forum have feel the same.

So I find myself willing to ''live life to the fullest", but failing miserable. We just have each other most of the time, but as closed as he is he doesn't enjoy talking, as most 18yo he distances himself, and not being his biological father doesn't help. He's still very energetic, we go to the gym, play football (yes with crutches), we pray together, watch movies, and have travelled as much as possible.

However there are days I'm exhausted or have to work (from home), or he's on such a bad mood that I can't even talk to him, and he would complain of being bored.

He forgets so easily of any good time, but when the least bad thing happens that can ruin his mood for a while. He never helps planning anything or tell me what he wants, or after we do something (travelling for example) he often doesn't tell me how it was for him. I'm drained financially so I cannot offer anything crazy at the moment, also I think he should learn to enjoy other things in life as pretty soon he won't have the strength to leave the house as often. He doesn't even tell me what kind of food he wants, even if I offer to cook or get him whatever he wants. It's so frustrating.

Any advice? I feel like a terrible caregiver not being able to fill his days with excitement, 

  • Hi there 

    I’m not sure I’m best placed to give any advice...I’m sure other members will be much more experienced than I. I just wanted to say that I think you are an amazing person and that you are a wonderful, wonderful caregiver. 

    I am grateful for angels that walk the earth, like you  

  • Hi there ...

    Your far from a terrible caregiver ... In fact you should feel pretty proud of your self ...

    You know he probly just wants you to be there ... When we get cancer our lives change forever ... And the word future has a different meaning ... He's so young, and to have gone through so much all ready ... He must feel angry at the world ... I couldn't have coped with what he's had at that age ... 

    There's lots you can do that don't cost much ... Computer games ... A MacDonald s  ... A trip to the zoo ... Playing cards ... It doesn't have to be huge ... And it's not him that gets angry at you, it's the cancer ... He's got no one else to take feelings out on ... It's not his fault or yours, it's just the situation ... Marie Curie will help you when there's a terminal diagnosis ... Go on their home page... I think you'll be surprised how much they can help ...

    So be kind to yourself ... Your not Superman ... Your just human, trying to do the best you can ... So just walk this journey with him ... Sometimes both admitting your scared ... Share thoughts, and listen to him .. without trying to make it o.k ... And do it together ... One day you'll look back and see how amazing you are ... Take every day as a memory day .. little things, mean a lot ... Chrissie x

  •  

    Thanks starcatone and Chriss for you kind words, they really lift me up the day I read them.

    I'm still struggling though. Yes, the concept of future changes. I don’t really know the correct way to deal with him anymore as discipline and education had a long term meaning that just vanished.

    Now I just wish we could become close enough to deal with what is coming in the best way, but him directing its anger towards me is just putting more distance between us. Yesterday was a terrible day I tried my best but he’s just getting more and more abusive, and I don’t know how to set limits (do I punish him? Is that what you do to a terminal patient?).

    It doesn’t feel right to let him do whatever he wants, I’d think illness it’s a time to practice virtues just as any other moment. I’m kind of hopeful death doesn’t have to be horrible if you feel loved and have given love, however my son is becoming unbearable and the best he could say to me yesterday was “I don’t hate you that much”.  

  • Hi there ...

    Well if I were were you, I wouldn't allow bad abusive behaviour .. the reason they get angry is the situation .. it's not an excuse for abusive words .. if I were you soon as he does that I'd walk away .. so he realises if he's abusive he has no one unless he's half way civil ... tough love ... 

    If you don't walk away it will become overwhelming for you ... when I worked on geriatric ward years ago .. I remember a man who didn't have long left through cancer .. he was the rudest most horrible man I'd come across ... demanding attention every second .. well I'm sorry .. but with me he had to wait .. and in the end I got respect from him .. and then I helped more when he was kinder in the way he talked ..

    I do the same with my 4 year old grandson who rules the house and has huge hissy fits .. you know I've never needed to shout at him .. I totally ignore him and do something fun .. he can only join in if he is calm .. he's amazing for me .. if he plays up while out .. I take him strait home and no treats .. so he's good for me ..

    It's about taking control back .. he probly pushing your buttons to see how far he can push you .. because of his situation .. well give him a shock .. no mater how hard it is .. take a step away .. he'll push a few times to see if he can brake you down .. but hay Spiderman use your powers to get calm back .. 

    Always here if you want a chat .. Chrissie x

  • Hello, you sound like a wonderful caregiver, I think with young age we just try to push away and hide a lot of how we feel, it’s heartbreaking because all you want to do is make it better and help, but you’re sure doing everything you can and that is the best thing you can do. I know this is strange to ask but where abouts are you? I’d love if you were close maybe I could be a friend :( because I know how hard it is to feel lost. I hope more than anything that things get better x

  • Hello Spiderman, I have just read your very sad post and your desperation to try and work things out in a way that is favourable for both of you.Yes this young man has had a difficult life but this is no excuse for his abusive behaviour towards you when you are trying so hard to do what is right.

    Why have you isolated yourself from family and friends? Maybe they could give you some respite, to have some time away from each other which would be good for you both. I cared for my late husband on his 6 month journey with lung cancer and I know how difficult, both mentally and physically it was.

    I can understand your son feeling bitter and angry with the hand that he has been dealt and unfortunately it is usually the nearest and dearest who seem to be on the receiving end of all the frustrations and abuse.

    As Chrissie has suggested maybe contact Marie Curie or Macmillan to see if they can give you any advice. 

    There is absolutely no excuse at all for the abuse that this young man is directing at you when you are trying so hard to do what is right. It is no wonder that you are struggling and I do hope that you can get some help or support from somewhere.

    Sending caring thoughts your way. Lynne.x

  • Thank you all again for your words, this forum is being such a blessing, it really helps finally expressing what I'm feeling. Yes I have thought about enforcing my limits in different ways but wasn't sure about what was right to do, you all seem to agree I should not allow the abuse to continue. 

    For those who wonder, I'm far from most of you in a non english speaking country. I'll see how the day goes, thank you for your support I'll keep you updated. 

     

  • Hi,

    It sounds like your family is going through hell - being together 24/7 won't help. For everyone's sake you need to take some time for yourself.

    18 is a challenging age for anyone to be, a time of self-doubt, of existential anxiety, of challenging authority and to start thinking for yourself. At that age me and my Dad fell out all the time, two alpha males in one home is a recipe for conflict. Now add in the added stress of cancer and adoption and things can become seriously stressful.

    Remember that you're the adult here so you need to carry on acting maturely and also that you're doing a great job as a parent. You mentioned that you pray together, forgiveness is a virtue in all major religions - especially where a situation is so stressful. Forgive him and forgive yourself for being inly human.

    You're out of curative options which is hard but has anyone given an estimate of how long your son has to live? I'm a lot older than he is but I also have an incurable cancer and know first hand just how hard it is to live with such uncertainty. Living with that at 18 or caring for someone so young with such a diagnosis must be very difficult. 

    Best wishes

    Dave

     

     

  • Thanks Dave, they refused to give me an estimate but I understand we are in the last six months now, no other child in the same hospital has survived much more than that.

    I hate giving advice without seeing any resolution, so I'll take your advice and seek some time with friends this week, promise. Yes I forgive him every time, maybe part of the problem is that I so easily act like nothing happened.

    I'll let you know, thanks for you answer. 

  • Hi Dave. Good sensible advice once again from somebody who knows what it is like to live with cancer. Having cared for my husband on his journey with lung cancer it wasn't easy but nowhere near as bad as it was for him. I just had to deal with the fall out from all the symptoms while he suffered and fought to keep going until the end.

    That said, cancer has left a big hole in my life.

    Keep going strong Dave. Lynne.x