Monday, July 29, 2013
My bones are picked clean. The buzzards of fatigue and stress, self loathing, contempt have ravaged my skeleton and left no tiny little morsels of kindness, toward myself or toward him. He continues his inexorable slide into the vast emptiness of the Alzheimer's desert. He stands, motionless in that space until directed to sit, to stand, to walk. His shuffling gait getting more palsied, weaker, slower. I scream myself hoarse: at him, at me, at the universe. I scream so loud and so long, I see spots before my eyes. You would think, smart girl that I thought I was, that I would know how awful I will feel about my screaming when he's gone. But you see, I DO know this; I just can't seem to help it. I want to punch something all the time. There are mars and scars and holes in my house bearing testimony to this. It is actually no surprise I am so accident prone. It helps to be with others, not so alone in his care. It helps me monitor my own infantile reactions and gives him someone with a little distance who can be always warm and kind. The only advice I get from professionals seems to be about how to engage him and/or how not to judge myself. I flat don't want to do the former, and cannot possibly do the latter. I want to be free of all this. The constant, never ending need, the waste management, the pitying looks from others, the obvious end of my rope for me. I am sick to death of all of it. I am tired of hearing my own whining. Perhaps that's why I scream.....to hear something different coming from my lips?!
As I move along the inexorable ruler of time, I trust my elders less and less. I yearn to be with younger folks...especially my own family as they have the most appreciation for me. Elders can no longer be trusted to be there. To fool the vagaries of death's sure grip. They will fall off that moving sidewalk of life, right in front of you, right when you need them most. No, they are not to be relied upon. Look to the youth to feel happy, reasonably secure and satisfied. Although their company is not absolutely fulfilling either. They are tentacled to the demands of their own places in time. They must provide. They must oversee their young. They have less actual free time to just be, to live in the moment. Hmmmmmm...the very young then? They are remarkable to be with, to study, to watch develop and learn to think. But it is a singular avocation. They can't return the favor of deep thoughts acquired through experience and over the full spectrum of time's passage. That leaves the peers and when peers sicken and fall over like the elders, it is terrifying. Like a raven's wings, dark and broader than you would guess, a screaming sadness, a grief overcomes me. Perhaps I see a more distinct decline in him, perhaps I am juggling various prescription drugs in my efforts to sleep, to "..knit up the ragged sleeves of time." (sorry, Mr. Shakespeare) Perhaps it's that I started to read for the first time in a long time and the choice, "The Glass Castle," was so bleak and such a vision of strength in someone else's suffering, that mine pales by comparison. Perhaps it is the yawning clutches of death's grip I see in my old cat and occasionally in my beloved grand dog. Perhaps it is the loss of my beloved Aunt, who was so special that at 96 she still had hundreds of people at her funeral, mourning and keening their deep sense of loss, even as they tried to celebrate her long wonderful life, filled with wonder and service to others. It is most likely all these things together. But rulers and ravens aside, I am on a journey of unknowns and I am fighting hard for the faith to see me through.
I am a certified psychometrician. I have another Masters degree in reading and language disorders. I have a PhD in organizational leadership. I am trained and skilled in conflict resolution. I am unusually kind and loving toward animals, all animals. I am pretty sensitive and decent to human beings as well. Can anyone help me understand how I can shriek myself hoarse, until I see stars, and verbally abuse the man I have been married to for 45 years, the father of my children? I understand his disorder. I realize he cannot help what he has become. I even have enormous empathy for his feelings of loss.....and yet..... I would really like to know and understand the size of anger that happens to me under certain circumstances...why do I want to leave him standing in traffic when he cannot learn or remember no matter how many times he's shown or how recently I've demonstrated, for example, showing him how to buckle his seat belt in the car. Not only can't he remember, he complains in such a way that he has decided it's all my fault. No matter what has happened, he self protects into "I told you that would happen.." So it's really all my fault. I think I must have been a princess all my life. Although I certainly have had the requisite amount of self esteem and the typical self centeredness that comes with that, I thought I had always been pretty sensitive to others and their needs. Maybe not. Maybe I have really been a codependent type martyr and only nice for what I could manipulate out of it for ME. Because I remain enraged at what has befallen both of us with this disease and I rail about it every day. Out loud.
He used to leave me breathless, running behind him, trying to keep up. He didn't mean to. He was absentminded, even then. His mind churning and considering, planning, thinking. Admiring the glories of color and substance on our long walks. Long, intimate conversations, not always about deep thoughts, but always dreaming, planning, sharing. I would complain that he needed to stop whistling and slow down! I would plead with him to notice that I couldn't comfortably keep up and couldn't engage well in our conversations, his long legs and restless energy making a mockery of my efforts. Oh how I wish I could run along behind him again! How I could hear that irritating whistle! Now, he shuffles aimlessly, tiny little three inch steps at a snail's pace. No whistling, no coherent language left. He mostly sits, stooped over, his eyes closed, his seat growing damp with the mindlessness of urine. He gets angry when I try to engage him in activity--this man who loved to walk!! He complains of fatigue if he has shuffled behind me in a grocery store for less than an hour. He gets irritated if I ask him to do anything at all, complaining exactly like he used to when he carried probably more than his fair share of our load.
I am running an unlicensed nursing home. I work full time here. Unpaid. No time off for bad behavior. One cat has kidney failure and needs subQ fluids given in a drip. Another has a thyroid disorder which currently is controlled by medicine which takes constant monitoring and blood checks to make sure we are actually controlling the thyroid and not killing her liver and/or bone marrow. One dog needs medicine to control anxiety and another to prevent bladder stones, to which he is prone and has had two surgeries to correct already. The other dog is essentially worry free, though she gets painfully constipated and needs help and watching. Then there's the old guy. He has no conscious language left. It no longer stops him from discourse efforts of course, but he makes absolutely no sense. And he has no idea what language means when he hears it. He no longer can safely do anything at all for himself. Wiping his bottom, washing his hands, brushing his teeth all require someone else's efforts if germs and dirt are to be cleaned away. I remain mad as hell about him, partly because he looks like my husband, and I can't stand that my husband is now some kind of pathetic dork. But also I think anger remains my safe go-to emotion rather than the screaming grief that actually consumes me.