He's drawing away from me

Dear Needing friends,

My heart goes out to you. This must be such a heart-breaking experience for you.

I know so well what you are talking about as I experienced it in the last couple of weeks of my husband's life. The sicker he became the more he seemed to withdraw from me until, close to the end, there were no hugs and cuddles, not even kisses goodnight, and the topics of conversation were exactly and only the ones you have mentioned in your post.

This made me so very sad. But, at the time and given my own stress level of that time, it also made me angry. I know it sounds terrible but at those times I thought: I am doing things for him all day, day in and out, and I love doing them - but can he not at least hold me at times or kiss me or can we not talk about other topics than those that concern his health?

But, you know what? I have realised that, no, we couldn't have. And now I am not saying of course that this is exactly the same for your husband and you. But I feel that my husband was no longer able for closeness because he didn't have the physical and in particular emotional energy to make an effort, to reach out, or even to accept and respond to loving gestures from me. And, also, I think that when our loved ones approach the end of their lives they really feel the pain of the impending loss and something stops them to create situations in which they could feel it even more, do you know what I mean by that? It's like saying: If I get close now, that is beautiful in the moment, but it also reminds me of what I will soon no longer be able to have. And I think that hurts. It hurts them as much as it hurts them.

I really regret that I didn't know all this back then. If I had, I wouldn't have been disappointed in or angry with my husband but very understanding. Maybe I would have discussed my feelings with him instead of saying, "I am beginning to feel more and more like your carer and not your wife!". What an awful thing to say!

If you ask my advice or want my opinion, I would try and sit down with your husband and say to him that you feel it is sad that you don't have a cuddle or a hug and also explain that it would be really meaningful for you if you did. Maybe he will be able to say what he feels and what is going on in him. Or maybe you will just have a hug and a little laugh together. Don't do what I did and avoid talking about it while the sadness in you and the resentment perhaps as well are growing.

Love and hugs

Mel.

Melaniel l put it so beautifully Pam and her advice was really brilliant .The thing is we have to find a way to live our lives because people can survive much longer with the treatments available .It really does become living with cancer. Bill has already survived longer than statistics suggested and after the last few months of sheer terror and anxiety has stabilised how long for we dont know but I am trying not to think about that and to live life as I can .Have had so  many reactions from Bill over the course of these 3 and half years that at times not quite knowing who he or I was anymore. Sometimes you just have to get in with things even if they dont want to .As long as they have someone there with them you get out and do somethings you like doing . Its no good you sitting there worrying going out wont stop the worry but it will give you the strength to face whatever is coming .Take care lots of hugs xxx

Hi Mel, thankyou for such a heartfelt and beautiful post. I think you have hit the nail on the head, he has no energy for anything and I am sure you are right, physical contact is bitter sweet for him. He has actually told me a few weeks ago how much he will miss me when he's gone. This is practically the only reference he has made to his situation , and even now there is no diagnosis apart from his pancreatic cancer which was removed there was no evidence of spread on his last scan but he just can't eat. He has another scan next week and is it awful to say that I hope they find a reason for his massive weight loss.?

I don't know if I am strong enough to talk about the sadness, my anger I turn outside, at the constant waiting for investigations, results, prescriptions not being done, the list goes on. I have even been very rude to my boss, with good reason and am waiting for the outcome. Thank you so much once again and I hope that you are well and moving forward, with Paul. Much love, pam xxx

Thank you Granny Sue, I think that the living with cancer as you say is something that I must learn to do. I can't believe how he keeps. Going with such little intake and I feel I am living in limbo watching and waiting for whatever is going to happen next. This isn't living for me, it isn't living for him but I don't know how to make it better. I salute you for the 3and a half years you and Bill have been fighting this awful disease and thankyou for sharing your experiences and knowledge. I think I may have forgotten how to have fun, it saps the life out of us. I find  nature a great source of comfort. Thank you for the hugs, I needed them xxx

Hi Pam,

I am glad you have found my post helpful.

I understand whar you are saying: Of course it would be devastating if they found that the cancer had spread to somewhere despite the fact that the main tumor was removed, however, having a clear diagnosis and explanation for the weight loss and lack of appetite would be easier to deal with than this not knowing.

When I look back now I can see that Paul and I were so much on edge for so many years becuase, even when his cancer seemed stable enough, we always knew that this could change very quickly and we didn't know when this was going to be. So once they found the mets to the liver and started him on Chemo, it was shocking but, at the same time, a relief because now at least we knew and we were doing something.

That you turn your anger and perhaps despair outward is very understandable. I used to do that too. I think it is our way to deal with this overwhelming fear and distress.

I am sorry that I occasionally said the things I said to Paul. But I honestly think that he would say, "Sweetheart, I know it was very difficult for you too." So I am no longer beating myself up for it; I have actually stopped that quite some time ago now.

Yes, it can be difficult to express your sadness. However, it may be helpful. And the fact that your husband said how much he will miss you when he is gone means that he, too, has been thinking along those lines. Maybe you don't need to have a big talk with him, because, again, that could mean too much exhaustion, but when you are feeling the sadness the next time maybe you can just say it, "It makes me so sad that we don't hug. Can I hug you right now?" or, "Can you just take me in your arms and hold me for a little while?" or whatever works for you both.

As for myself, since you asked, yes, I am okay. I think I have good days and worse days but over all I am doing okay, eating well and sleeping well, socialising with friends, working away and occasionally having a little cry and of course missing Paul all the time but having accepted that it is as it is. I have signed up for the Doula End Of Live Companion Course with Living Well Dying Well in Luas early next year and I am really looking forward to it since I still feel very strongly that I do want to work with people who are dying from cancer and their relatives and friends. What I have gone through can only make sense to me when I can use all that I have learned to help others.

Love, Mel.

Dear Needing friends, have just read this thread and just wanted to say my heart goes out to you. Over the last couple years with my husband and the cancer journey ups and downs we have had - it is so so hard. Sometimes this journey has seemed to bring us closer together and other times apart. The sadness is something I can identifty with it is so hard seeing your husband change both physically and mentally and ultimately the roles in the relationship to change when we love our husband's so much. I feel for you.

Hi sunflowers, thank you for your reply and I am sorry you are going through this too. Sometimes we just want our husbands back for one big hug and tofeel their support. This disease is a thief, it robs you of your time, your happiness and your loved one, eroding bit by bit. It's hard being the strong one, the carer the organiser of everything, but I know their life is harder still much love and thanks Pam xx

Hi Mel, and thank you once again for wise, supportive and understanding words. I am so glad you are going to help others, they will be so grateful for your help. You will be amazing. 

I am also really glad you have stopped beating yourself up