Friday, April 19, 2013

On the Breath

Something has happened to me. A primal scream ago I was losing my mind to grief. I had wrapped myself in insane levels of anger and was shaken with shame for my behavior toward the sweet soul of my lifelong partner. Somehow, some way, like a crab scuttling over the dark sands of the ocean floor, a small hope came sideways, slipping into the corners of my mind. It might be what is referred to as "acceptance" in this grief arena. An enormous weight has lifted from my heart, just ever so slightly, but in the weight of grief, any amount of relief is magnified in size and power. I am so grateful. Within this past week, I hit some kind of wall. My personal "yawp", as Walt Whitman would say. I was reduced to actual primal screaming. As I visited the various professionals I had made plans to see while home--the dentist, the doctors--a pattern of response came clear to me. They all witnessed our behavior and suffering and said the same thing. It was time to make various plans. Our neurologist said directly that it was time to look into a place for care that wasn't our own home. I was desperately grateful for the straight talk I heard from her and from the other professionals. It's not that I am ready to make plans quite this extreme yet, but it was somehow comforting to hear seasoned, experienced professionals acknowledge the degree of loss. Small, but huge, benefits ensued. Suddenly, though it was still irritating to tend to the chores of complete responsibility for another adult, my rage abated. My heart feels like it is daring to melt just a little, though I am aware that I will be vulnerable to more pain that way. At this point, pain is preferable to the agony of disappointment I have felt in myself, in my own inability to live up to my image of myself as a kind person. One major dilemma for caregivers is just this thing...our judgement of ourselves as we struggle to be more than what we are. This journey started with the drama of new loss, with an almost insincere grief (looking back) which was actually denial I think now. Following that came the growing realization of what we were into, and the full scale mourning and wailing. I got desperately tired of crying. Gradually my defenses came out in anger and in that valley I have been struggling for over a year. I think, and hope and pray, that I am coming out of that valley into acceptance. I know from experience in this journey that nothing is clear or complete in these stages. I will fall into fits of despair and will most certainly experience monumental anger. But I do feel a kind of peace this week that feels like a change, albeit small, but a seismic shift in my own mental well being. His sister called tonight and as I searched for things to tell her that I know she would enjoy hearing and that would make her happy, I told her about our new grandson. I shared with her that whenever I wanted to see Stew smile, all I had to do was show him the latest picture of the baby and he would light up inside and smile his old big smile. She started to cry and told me she was so desperately grateful that he had someone to love him so well and to take such good care of him. A few days ago that would have made me feel terrible as it was in such contrast to my own judgement of my care. But today it made me both surprised as I hadn't thought of that action being a kindness and also happy that I could make two wonderful people happy by my actions!

Tuesday, April 16, 2013


Alzheimer's is killing me. For all I know, it has begun its insidious tortuous path within my own neurological network. Certainly it is taking its exacting toll on my general health in stress, enormous stress in dealing with my patient. I used to call him my husband but that was long before he turned into a very bad acting toddler, with no empathy or awareness of his destructive power. Who requires constant, vigilant care, who is incontinent and has lost any idea of how to clean any part of himself. Who puts nothing in his mouth without my direct involvement...liquid, food, or medicine...who puts on or off no item of clothing without my help. Thus he has become my patient. Strange choice of words as I have NO patience with this patient. I think a stranger would take better care of him emotionally. I am bankrupt emotionally. I actually can't stand this any more and find myself literally pulling out my hair and screaming as loud as I can, no words, no message, just feral screaming with all my lung power. Of course it makes no difference except to make him sad in the moment...but he forgets it quickly. I don't. It is changing me. This journey is killing who I thought I was. I thought myself a kind person, a person who likes to help, a nurturer. I was so wrong. If a worthy goal in life is to learn ourselves, I guess I am becoming successful. But boy is it a shocker to see traits in yourself you would never allow in your conscious thought as part of you. And to find missing what you assumed would be there. Alzheimer's is killing my image of me. My daughter has witnessed a few lesser breakdowns of mine and observed that it was like Jekyll and Hyde. That my behavior was not normal for me. I beg to differ. The behavior she witnessed, the screaming fits are the new real me. We might have to hold a wake and a funeral service in the near future of the death of who I used to pretend I was. Few might come. However, even I wouldn't come to the funeral of the person I am becoming.