Dear Pooka:
First, let me apologize for not responding to you sooner as my daughter was married over the weekend and I was not able to write back to you until now.
I understand that you are desperately seeking a way to cope better with your husband's circumstance in which you find yourself inextricably entangled. Your feelings of rage and anger are completely understandable, Pooka, but more importantly than understanding why you are feeling this way is discovering a healthy way to deal with your volatile feelings, a way that will prove helpful to you and your husband both. A talk - a very frank talk - with your husband's hospice guidance counsellor should help. Be assertive and make your feelings clearly known and don't hold back from expressing the truth about the hurt and anger you feel as you seek their help. What you are going through is too much for you to bear alone and there is no good reason why you should have to!
The loss of control seems to be at the bottom of the anger and resentment you likely each feel and you each need to find ways to express your fears, frustrations and feelings of futility. Your husband, despite his behaviour and outward appearance seems to me to be suffering from deep denial as he tries to claim or regain some sense of control over his body and mind and his destiny. His pretense is in my opinion a defense mechanism that protects him - in his own mind - from having to face the deterioration of his health and to accept that his body is betraying him. He is not yet it seems able to accept that his death is in the near future. I empathize with him and how extremely painful a process it must be to come to terms with such a dire situation as is facing the end of one's own life.
You as well, Pooka are feeling and responding to the lack of control your husband's illness and his response to it and all that it means and imposes upon you and your current life and your hopes for the future. You may feel very trapped by your situation and may be questioning whether you can cope with everything such as is your husband's and your life in reality. Your self-doubts are a part of the painful journey you are on and I hope you will not permit guilt or shame to be a part of your feelings as you deserve to feel proud of how resilient you are and how honourably you are standing by your husband even in the midst of you justifiable feelings of anger. Your distress call must be answered - and soon!
You may naturally wish to escape from the consequences of your husband's denial which is making the last part of your lives together feel like a living hell on earth. I am so sorry that you are feeling so helpless and exhausted and abandoned and that you are left alone to bear on without the proper supports in place to help sustain you emotionally and psychologically. That needs to change. You need, as Brayden wisely advises you, respite.
Mostly, Pooka, you need hope that change in terms of acceptance and cooperation is possible before it is too late for your husband. I am not sure it will be possible as your husband's attitude may be the way he has always dealt with difficult things, or it could be an effect of the illness and/or medications. You will know better than anyone if there is hope for him to come to terms with himself and meet you once again in your boat so that you can travel the stormy seas together until the end. You will need help to recognize hope when you see it as your feelings of overwhelm have coloured your perspective. Hope will most likely come to you in the form of another human being who understands your feelings, allows you to unburden your heart in confidence, and who will gladly and compassionately support you through it all. Your need is urgent and I hope you will communicate your need to someone whom has the experience and skill to help you!
Your suffering, though different, is every bit as valid and as difficult as is your husband's. Please never wonder about the love you feel for your husband, as your darker feelings do not diminish the light in your loving heart in any way. Illness takes everyone touched by it to the brink of emotional collapse and reminds us that we are human and very frail at times, but it also has a way of reminding us how strong we are and just how invincible is the nature of love and loyalty. I hope you will soon be reminded of your strength and resilience and that your faithful love and devotion for your husband and your son will reward you with a newfound peace and all the hope your heart deserves. You are not alone. Reach out and ask for more help as I am hoping your cries for help will be heard and answered - soon!
With affection -hugs- xo
Cath1