September 27
He grabbed my hand, hard, and brought it to his chest. "Wait! I need to talk to you." He had not been talking out loud for a week, just mumbling softly on a rare occasion. I knelt and put my face in front of his gaze, "Yes, my love, I am here," I replied. "I want to say goodbye to you and to tell you that I love you very much." Perhaps he recognized that I might be leaving and he meant it literally. But I took it cosmically and had to take a knee.
October 9
I held him to me and babbled my loneliness. I told him all about the weekend family wedding I had attended. I talked about the people I had seen and asked him about who he remembered and who he didn't. I confessed passionately that I was so grateful that I was no longer mad at him and explained that he had never done anything to make me mad, that it was my own journey. It was so nice to be with him. Another gift of assisted living. He straightened in his chair and looked right at my face.
"Wait! What is your name?" he asked. I replied that I was Ann...his Ann. He smiled broadly and answered, "Well, no wonder!" It made me so happy to see the dark veil drop, even for a minute, and recognition flood through. I told him that although his mind forgot me from time to time, I was always there with him and that his heart never forgot me. He liked that.
Friday, October 31, 2014
Control
I knew I was going to die. Imminently. Not the raging, heart stopping terror or fear of dying. This was a cold certainty. It felt as if I had come through the raging fear part and settled into a white cold clarity of peace and acceptance. My husband had taken our small son on a very high, very wild ride at Disney...the kind whose exit is at least 1/2 mile from the entrance, through easily a half million people. I was carrying an infant and holding onto a toddler, our two small daughters. As this was before the age of cell phones, I knew if the boys went on that ride, I would never find them again in the melee and crowds. I asked the proprietor of the ride if my girls were too small, if it would be dangerous for us to go along. He assured me it would be fine. He was wrong. I knew immediately on the first rise and twist that we would die. My glasses flew off my face and I clutched my girls to my chest, determined that I should try and save them if at all possible. We lived. But in my frightened mind, I had experienced death.
Fear and I have played games with each other my entire life. Just now, as I maneuver my husband's slow death, I am finding less to fear. I am much more outspoken and take on way less roles of support to others than usual. I refuse to walk on the Alzheimer's walks; I am angry when that association asks for money from me. I don't plan dinners for visitors or go out of my way to make anyone else comfortable...except him. It is an unusual position for me, foreign, alien.
Except for situations I see for myself that I can do some good. Walking through the county fair, I came upon a cow that had twisted herself up in her rope so tightly that she couldn't eat, drink, lie down. She couldn't even move her head. Normally I would have worried about the cow and kept going, probably reassuring myself that her owner was nearby. I have no experience with cows, and find them way larger in real life than you would think from a passing car glimpse of a rural scene. It never entered my mind to worry. Here was something I could actually fix.
I pushed a huge cow over with my body....the neighbor, whose greatest interest was chewing my shorts. I worked hard on the knots but eventually needed to crawl under that cow to untie her from the source.
I think about that cow a lot. I smile at my own audacity. It feels so good to have taken action. Action that made a difference somehow.
Fear and I have played games with each other my entire life. Just now, as I maneuver my husband's slow death, I am finding less to fear. I am much more outspoken and take on way less roles of support to others than usual. I refuse to walk on the Alzheimer's walks; I am angry when that association asks for money from me. I don't plan dinners for visitors or go out of my way to make anyone else comfortable...except him. It is an unusual position for me, foreign, alien.
Except for situations I see for myself that I can do some good. Walking through the county fair, I came upon a cow that had twisted herself up in her rope so tightly that she couldn't eat, drink, lie down. She couldn't even move her head. Normally I would have worried about the cow and kept going, probably reassuring myself that her owner was nearby. I have no experience with cows, and find them way larger in real life than you would think from a passing car glimpse of a rural scene. It never entered my mind to worry. Here was something I could actually fix.
I pushed a huge cow over with my body....the neighbor, whose greatest interest was chewing my shorts. I worked hard on the knots but eventually needed to crawl under that cow to untie her from the source.
I think about that cow a lot. I smile at my own audacity. It feels so good to have taken action. Action that made a difference somehow.
What I did on my summer vacation
This summer I went to Lake Michigan with my family. There I watched my cat and my husband die. This grief feels fresh. And heavy. I am near tears now, again, all the time. It is now clear to me why I stayed so angry for so long. It was to avoid this feeling.
I am a voracious reader. Eclectic taste, driven to absorb others' insights and ideas, I enjoy a good sexy beach book as well as meaningful abstracts that need concentration and creative energy. All I require is that they be well written. I don't remember authors or titles, or even most of the plots, but I absorb directly into my psyche the characters and the author's beliefs.
I haven't been able to read in a very long time now. Instead I am addicted to gaming, online mostly. I play video games and word games and puzzles obsessively. It is mentally demanding enough to require that I not worry or anguish about other things, but doesn't require the kind of attention that a good read does. Books take me to another world but require some work and an altered consciousness. Games let me escape the daily grind and pain, without requiring any great expenditures of mental energy.
The beach has expanded in meaning this summer. Ludington has become about learning how to let go, and let be.
I am a voracious reader. Eclectic taste, driven to absorb others' insights and ideas, I enjoy a good sexy beach book as well as meaningful abstracts that need concentration and creative energy. All I require is that they be well written. I don't remember authors or titles, or even most of the plots, but I absorb directly into my psyche the characters and the author's beliefs.
I haven't been able to read in a very long time now. Instead I am addicted to gaming, online mostly. I play video games and word games and puzzles obsessively. It is mentally demanding enough to require that I not worry or anguish about other things, but doesn't require the kind of attention that a good read does. Books take me to another world but require some work and an altered consciousness. Games let me escape the daily grind and pain, without requiring any great expenditures of mental energy.
The beach has expanded in meaning this summer. Ludington has become about learning how to let go, and let be.
black cat
I scared my cat to death. My last beloved creature, the last in a very long list of cats, dogs, fish, rodents of various descriptions, birds. Most brought home by my children and left in the bosom of grandma. Maggie was not young and enjoyed the same ailments and treatments the rest of us old girls do. But she was relatively healthy. Until I did the responsible thing and took her to the vet. There she snarled and hissed appropriately at their intrusions...until she didn't. She just stopped. My best medical opinion is that she stroked out, triggered by the stress of the visit. Now I know there had to be underlying issues as she endured no more, and possibly less, procedures in this visit than in former ones. But I think it scared her to death. I wrapped her up and brought her home, but she never recovered...she stopped eating and drinking. I put her in the sun on her beloved porch, the hummingbirds hovering just out of her reach, so she could dream of the chase, long ago in her youth. She walked around some, changing from sun to shade, but remained steadfast in her lack of desire for any liquid or nutrition. I understand in my head, that I have done everything I can think of for her. But all this dying sucks the joy out of life for me.
It is relentless, the loss. One of my loves after another. It is supposed to be a normal part of life, the end game I guess, and we are supposed to grieve. But wow! We don't discuss how devastating the grief part is. Like my ailing husband, I wrapped her up and took her to our lake. There she (and he!) enjoyed the sun and fresh air for a few weeks. Then he went back into the hospital and she took her last breaths on her favorite easy chair. Maggie was one of the sweetest creatures to stay awhile with us. She shall be desperately missed and forever loved.
It is relentless, the loss. One of my loves after another. It is supposed to be a normal part of life, the end game I guess, and we are supposed to grieve. But wow! We don't discuss how devastating the grief part is. Like my ailing husband, I wrapped her up and took her to our lake. There she (and he!) enjoyed the sun and fresh air for a few weeks. Then he went back into the hospital and she took her last breaths on her favorite easy chair. Maggie was one of the sweetest creatures to stay awhile with us. She shall be desperately missed and forever loved.
Tuesday, September 16, 2014
Metronome
August 26, 2014
White hot searing empty. The kids have gone.. The house is quiet. And clean. And meaningless. He continues to not look at me. He continues to act as though I am not there. I am so sad and empty as the white hot searing empty of my house. I sit with him at dinner, in the assisted living place we have now succumbed. I make pleasant conversation with the sweetest others--caregivers, families, inmates. I cannot wait to leave. My house is so empty. The revolving door has slowed for a minute, so it should not be too bad. The Vietnam wall is visiting in the park nearby. I visited and could not stop crying. All those young lives...gone..snuffed out...taken violently...row after row, list after list...and on and on....the losses are turning my eyes into wet marshes of deep sorrow for what might have been, for what should have been. For all of us.
and yet...
I went back to see him. As I rubbed his chest gently, I leaned toward his face and said, "I love you". He answered some social response like, thank you. I kept gently stroking his chest and added, "and you have always loved me." This time he kept those soft shoe button brown eyes on mine as he answered, clear as a bell, "That is the truth, and I always will." He reached up and grabbed my chin, much as he reaches for real and imaginary things. I exclaimed, "that's my chin!" He quickly responded, "oh, sorry". I leaned back into his face and asked, "do you know this face?" His response was unintelligible. I added, "do you like this face?" He answered, again clear as a bell, "I LOVE this face!"
Treasures and tidbits....
White hot searing empty. The kids have gone.. The house is quiet. And clean. And meaningless. He continues to not look at me. He continues to act as though I am not there. I am so sad and empty as the white hot searing empty of my house. I sit with him at dinner, in the assisted living place we have now succumbed. I make pleasant conversation with the sweetest others--caregivers, families, inmates. I cannot wait to leave. My house is so empty. The revolving door has slowed for a minute, so it should not be too bad. The Vietnam wall is visiting in the park nearby. I visited and could not stop crying. All those young lives...gone..snuffed out...taken violently...row after row, list after list...and on and on....the losses are turning my eyes into wet marshes of deep sorrow for what might have been, for what should have been. For all of us.
and yet...
I went back to see him. As I rubbed his chest gently, I leaned toward his face and said, "I love you". He answered some social response like, thank you. I kept gently stroking his chest and added, "and you have always loved me." This time he kept those soft shoe button brown eyes on mine as he answered, clear as a bell, "That is the truth, and I always will." He reached up and grabbed my chin, much as he reaches for real and imaginary things. I exclaimed, "that's my chin!" He quickly responded, "oh, sorry". I leaned back into his face and asked, "do you know this face?" His response was unintelligible. I added, "do you like this face?" He answered, again clear as a bell, "I LOVE this face!"
Treasures and tidbits....
Equity
August 23, 2014
I am mad again. Enraged actually. Thankfully not at him any longer, but for him. I am mad at random strangers who walk about in silly shorts, their bellies hanging over their former belt line. They walk about casually, wherever they want, whenever they want. No thought of trying to remember who they are, just casually strutting about, enjoying the sunshine and warmth of beautiful summer days. Their spouses trot along in their own silly shorts, unaware of how precious those moments are. My old guy has long since lost the beer gut, and in fact weighs less than he did as a beanpole 9th grader. He struggles to not lean too heavily on his pressure sores and awaits the next intrusive activity, strangers who will wash him, clean his butt, feed him. He tries to sleep through the waiting, the long leaving, and mostly accomplishes that little bit anyway. I choke on the sadness when I am with him. He holds my hand in a Parkinsonian death grip and I struggle with fearing there is a shred of awareness in him of his condition. The home is bright and clean. It smells good and the women who care for him are wonderful and personable. The other patients are a Saturday Night act waiting to be written. Ken keeps a loud and steady drum beat and horn part going on the table and with his mouth. Lorraine cries and keens steadily as she wheels her chair around the place, clutching her dolly to her bosom. June discusses literature with you and then asks for help finding her own room. Byron keeps a loving banter going, consumed with getting enough milk at mealtimes and inviting all females back to his room and to his bed. All characters in this tableau and all quite interesting and kind. The Salvation Army comes every week to preach and to conduct sing-a-longs. The staff organizes activities every day, like baking and constructing bird houses, bingo, exercises. There is a stress on sweet treats--sundaes, shakes, ice cream cones, cookies, cakes--and on being together socially for all these occasions. He is wheeled into and amidst all these affairs, sitting stooped over, drooling incessantly as his swallow reflexes leave him as well. It is such a strange feeling to enjoy life and family and friends and activities with this subterranean river of grief roiling constantly in my gut, just below the surface. I want peace for him and for me. I am not proud of my resentment as I observe other pairs in the blissful ignorance of their own health. None of this is fair.
Malpractice
July 27, 2014
I can't stand to be with him and I can't stand to be without him. I start crying when I'm with him and have to leave. I run back to the sunshine and the pool, to sounds of squealing children, to life. there I seek out and yet somehow resent the couples, and the women whose partners are sitting next to them. I can't stand to sit next to him because he is gone. I am turning down social invitations. I want to be alone except for my kids and a few family and friends. I am having heart surgery right now. I have very little issue with the need or reasons, but my rage continues about the particular meanness of it all. The real issue here is the choice of tools. My surgeon is using a spoon. If he were to lay open my chest, clutch my heart tight and fast, and yank it out, I would gasp with the terrible suddenness and assault, but I might be able to heal. With this procedure, he is working through skin, fat, and muscle, slowly and inexorably with his spoon. The dying continues all around me. Ready or not, it comes..all around me. My beloved..and last..cat, my sister in law, who loved me unconditionally and shored me up constantly with her support and gratitude for my loving her brother, my friend's brother, all dropping like flies around me while my partner ebbs away at his own snail pace. This loss, this operation is perhaps the most painful loss of them all, but it is not honored with quick, clean, surgical precision...it is moving like the glaciers, slowly grinding all the gravel of hopes and dreams, all the nuggets of fun and mutual adventure, ahead of it, pounding it all into dust. The spoon, regularly, slowly scooping the joy and pleasure of life out with the remaining life skills. He has forgotten how to walk. He is terrified when we lift him to change dressings or pants, or to move him from his easy chair to his wheelchair. His legs wobble with unfamiliar weakness, his knees bent, all parts forgetting their normal roles, routines of living, and settling into their still, frozen caricatures of death. I still feel a sense of failure and betrayal over my inability to care for him at home. The fact that I cannot care for him at home in his present condition does not allay my persistent belief that I could have done it better and that I owed him that effort. I know that he will die sooner because he is not with me at home. My new learning and hope is that perhaps that is not such a bad thing. Perhaps dying sooner when your heart is being scooped out of you with a spoon is, in truth, a mercy and a blessing.
I can't stand to be with him and I can't stand to be without him. I start crying when I'm with him and have to leave. I run back to the sunshine and the pool, to sounds of squealing children, to life. there I seek out and yet somehow resent the couples, and the women whose partners are sitting next to them. I can't stand to sit next to him because he is gone. I am turning down social invitations. I want to be alone except for my kids and a few family and friends. I am having heart surgery right now. I have very little issue with the need or reasons, but my rage continues about the particular meanness of it all. The real issue here is the choice of tools. My surgeon is using a spoon. If he were to lay open my chest, clutch my heart tight and fast, and yank it out, I would gasp with the terrible suddenness and assault, but I might be able to heal. With this procedure, he is working through skin, fat, and muscle, slowly and inexorably with his spoon. The dying continues all around me. Ready or not, it comes..all around me. My beloved..and last..cat, my sister in law, who loved me unconditionally and shored me up constantly with her support and gratitude for my loving her brother, my friend's brother, all dropping like flies around me while my partner ebbs away at his own snail pace. This loss, this operation is perhaps the most painful loss of them all, but it is not honored with quick, clean, surgical precision...it is moving like the glaciers, slowly grinding all the gravel of hopes and dreams, all the nuggets of fun and mutual adventure, ahead of it, pounding it all into dust. The spoon, regularly, slowly scooping the joy and pleasure of life out with the remaining life skills. He has forgotten how to walk. He is terrified when we lift him to change dressings or pants, or to move him from his easy chair to his wheelchair. His legs wobble with unfamiliar weakness, his knees bent, all parts forgetting their normal roles, routines of living, and settling into their still, frozen caricatures of death. I still feel a sense of failure and betrayal over my inability to care for him at home. The fact that I cannot care for him at home in his present condition does not allay my persistent belief that I could have done it better and that I owed him that effort. I know that he will die sooner because he is not with me at home. My new learning and hope is that perhaps that is not such a bad thing. Perhaps dying sooner when your heart is being scooped out of you with a spoon is, in truth, a mercy and a blessing.
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