Dear Pooka:
Thank you for writing to update us and let us all know how you're doing. It sounds like you have been to hell and back emotionally over these past few weeks, but now you seem to have found a way to re-balance yourself in terms of your perspective and have found your footing a little more than you had when you last wrote to us. Having had friends to open up with must have been so helpful. I'm glad you reached out to those who know you best and that you received their support and understanding. Sometimes just having someone caring to listen helps more than anything.
Your worry for your son tugs at my heart as I can only imagine how it breaks yours to see him suffer and to know that his Dad cannot be there for him right now in the way you wish he could be, for your son or for you. Your husband does sound like a very determined man, a man whose own sense of self and self-determination cannot be shaken or diminished despite the realities of his disease and his prognosis. It is as if he thinks he can will himself better and that too is heartbreaking, although many people including myself can fall prey to this type of thinking. Sometimes it can be a trap, yet at other times it can prove to be the will to live that keeps people going.
It seems to me that your husband has lost a great sense of dignity by enduring with his illness and I imagine it is almost unbearable for him to have to succumb to the wishes of others and to expose his vulnerablility in front of them. I imagine this is why he depends so heavily upon you, and while it is not fair to you, and his stubborn refusal to accept the truth is exhausting for you both, you are the person he trusts most, the person who knows him inside and out and accepts and loves him despite his flaws, and he knows this truth above all else. He knows you will be there for him to cater to his needs, to protect his dignity and to care for him daily.
I think your husband is just too embarrassed by the very thought of having his personal needs (ie diaper changed) attended to by strangers, no matter how professional or well-meaning they may seem, and with every act of help from others he is closer to acceptance of his fate which at this point he seems to reject outright. I can relate to how hard it would be to accept help, especially if I were in denial and hanging on to hope as I tried to convince myself it was not false hope, as I am very shy and private and would abhor having to submit to the indignities that serious illness imposes upon one, and mostly, I would feel afraid of the truth if it meant I had to accept that I was going to die.
Pooka, I know you have so much to deal with daily, and you don't have the open and honest communication you desire to have with your husband which only adds to the stresses you feel. You are trying to come to terms with his illness and grieving it without being able to discuss how your heart is hurting with the man you love. I'm glad you were able to realize that the way your husband is responding to his situation is typical of how he responds to crises in general, as that realization may help you to accept his limitations and it may also give you a guide for what you can expect as things progress.
I am hoping and praying that you and your son will be able to have the conversations you need to have with your husband. If someone through hospice could facilitate some family counselling I really think that may be useful to you all. Your husband needs someone to help him face his fears, and you and your son need someone to acknowledge your sorrow and help you prepare for the inevitable progression of your husband's illness. If your husband is not willing to participate in counselling, I do think your son and you should still consider seeking out and accepting this kind of help so that you will have more support as your husband's condition worsens. I'm so sorry that his family is being so instrusive and insensitive to your needs as a family, and I hope you will find the courage to assert yourself with them, gently but as firmly as possible, and ask them to give you the space you and your husband need.
Please write and let us know if your husband has made any progress in terms of cooperation and acceptance of help from others, as well as from you. You, your husband and your son remain in my prayers. Hang on to hope, Pooka. We are here for you as you take one day at a time!
With affection -hugs -xo
Cath1