Thursday, October 17, 2013
I thought I was angry. I was. I thought I was done. I was. What I didn't expect was the force of love, the strength of our tie, the longing for what we were. He is still here, but these waves of grief feel new and are huge. Perhaps it is the daily grind relief I get from my new helper; maybe it is the sudden intense interaction I am getting from all the palliative care workers who have been in and out of our house. Whatever it is, I am freer to feel the loss and to appreciate this man...not for what the witch Alzheimer's has left behind so far, but for the positive beam of love that my husband has directed at me for 50 years. I looked into his lost, dear, familiar face after dinner tonight and the anger melted away. I took him gently into an embrace. He clung to me, lost still and shaky, but there, as he always has been. Tonight, from the fog of dementia and the stumbling steps of Parkinson's, he returned from his bed to tell me that he loved me. He loves me. He can't put on shoes, and he can't brush his teeth, and he can't wipe his bottom, but his love for me is still evident to him. The lessons here are gigantic. I haven't figured them all out, let alone mastered anything, but they are clear to me. Love is everything. I guess it always has been.
China or not, I have hit it. It is monstrous and it is final. I can't do this any more. I have no control over my emotions. Perhaps I waited too long to seek help, to put my own oxygen mask on in this bumpy ride, but in any case the rarified atmosphere of poopaloosa has finished me off. I am no sissy when it comes to waste management. Poop and I have been on intimate terms my entire life, through lots of children and all kinds of animals. But the final straw feeling of your life partner un-developing, unraveling skills and controls in reverse order that we learn them from birth to maturity trumps all that. It felt real final to me when we began that part of this journey in August of this year. My daughter's best friend in high school was murdered by a serial killer in their senior year of high school. A freak horror show of a coincidence which took the life of a dear and talented girl and changed the lives of all of us forever. My daughter had put her trust in this relationship going forward into the next stage of life together. Her sister, my youngest child, was so traumatized by it she developed serious panic and claustrophobic traits which haunted her into her adult life. At Holly's memorial service we stayed close to her parents as we didn't know a lot of others and felt closest to them, most LIKE them. Frankly it gave our daughter comfort to be near them also, as if she were somehow near Holly herself. At that service Holly's dad kept manically stating, over and over again, how everything would be exactly the same. That he would come see all the kids' plays at school, that nothing would be different. Each time he said it, it came out clearer and louder and made the sensitives among us cringe more and more. We all knew that NOTHING would EVER be the same again, for him or for any of us there. We all also understood the kind of pain that would have to cloak itself in that kind of full metal jacket bravado and denial. It is this kind of bravado I have been dealing with in myself. The truth is I don't think I have an entire year in me before I need full time all the time help for him. I am cooked now. I am done for. I do not have capacity for green eggs and ham my Sam. I will visit a lot and love you if you let me, but I have to go. I have to be free. I must go. For the first time I am thinking these thoughts coherently. I am not just roaring the pain and anguish. Tiny little threads of thoughts, ideas, pre-plans are beginning to form. Unthinkable before now, I wonder actively where I can have him live so his children, all his children, can gain ready access to him. I will not live forever and I will not live very much longer in fact if I dont make some serious changes. For this very time, right now, I am planning more coverage and help for home and more getaway time for me. I feel like a tourist at this wall, peeking over it into the forbidden city. We shall see for how long that works.