It's the evenings which are the toughest. Mornings are all bustle and first coffee, plans for the day, bills to pay, things to find and sort. Afternoons are a blur of appointments and errands. Dinner looms and I yearn for company, for purpose. There are no IV drips to hang, no medications to count, to fill, to administer. No creature to cajole into eating, just a little, to taste. They are all gone...the old cats...the old guy.
He just stopped eating. Near the end the nurses told me he would only open his mouth for me, that he kept it clamped shut tight when they tried to feed him. Later they told me they found whatever I had snuck into his mouth, stored there, unused, undigested, not swallowed. Monday night, November 10, 2014, he wouldn't open his mouth for me. I watched myself stop, and give up. After all the pushing, and begging, and demanding...I let go. A chorus of "No's" around the table from the other caregiver relatives of other patients swarmed around my ears as I wheeled him back to his room...leaving the table and his untouched dinner. I still feel as though I willingly starved him to death. For sure he died of starvation and I can only pray that the disease stopped him from swallowing food, not me.
The rest of that week I held vigil for him. He was slightly restless the first night but didn't respond at all, even to the slightest liquids we tried to give him with little sponges on a stick. Hospice decided to start giving him serious drugs at that time, and he never moved or opened his eyes again. The kids flew in from their various places in the world late Friday night and camped out in his room. We held him and each other as the life force drained slowly from his body at 7:15 Saturday night, November 15, 2014. Our son kept a stethoscope on his chest and burst into tears when that loving heart gave one last beat, a sweet goodbye, several minutes after it had stopped. There were a lot of tears in that room that night, but none from me. It was too surreal for me to grasp, too far fetched for me to believe. This was not over; this long, feisty love story was not done. I was relieved for him, but totally in disbelief. I still have doubts that any of this ever happened. Like losing my mother, losing Stewart doesn't feel like loss....just like unbearable, pain filled change.
We had a beautiful memorial service for him at our little church. There were bagpipes and music and heartfelt eulogies. There was good food and there was good fellowship from friends who could make it and family that was left. We all went through the motions, but I remained pretty stoic. A friend once told me that her grief was in a room down the hall from her heart, locked away until she could deal with it. Her plan was to go down that hall a little more each day, knowing that she had to open that door and clean out that room, eventually.
I still don't cry much, though at strange unpredictable intervals deep gasping, wrenching sounds burst from my chest and out of my mouth. I am inexplicably angry with the Alzheimer's Association and mutter unprintable responses to their requests for money. I am beginning to work on whatever "take care of yourself" means, though life has already intruded, as only life can, with others to help through other crises.
I have learned through this journey, through this loss, what a treasure I had in his love, and the truth he knew all along: that I loved him deeply too.
Thursday, March 5, 2015
Friday, October 31, 2014
Deathwatch
He swam valiantly, just his head and small antlers visible above the whitecaps. Something had spooked him so badly that he had leapt off the end of the pier into the roiling, cold October waters of Lake Michigan and swam straight out as if he could make it to Wisconsin. He eventually turned and seemed to be headed for land, but whether the currents, or wind, or cold would let him ever find safe harbor again remains an unknown to me, as I couldn't bear to watch. Any more than I can barely watch my husband struggle as he loses sight of his landfall. There is a profound, poignant pain in being with him now. His body is so thin, bony ridges clear where muscle used to soften and hide. He struggles when I press into him, to say something, anything. Mostly he just sits, learning to the side, yearning to lie down, to let go. His once soft brown eyes glassy, unfocused, looking for or at something I cannot see. His cheek bones so defined and sharp, his knees locked in a Parkinsonian embrace with each other.
I carry a knot of grief in my chest all the time now. Friends and family try, with the same valor and constancy as the young buck, to keep me headed to shore, but I am uncharacteristically quiet and removed from the normal, regular patterns of life. Strangely, I am the opposite when I am with him. Like the clown, I smile all the time. I keep up a friendly, funny banter for him and for all the other residents and their families with whom I am locked in this dance of death.
I carry a knot of grief in my chest all the time now. Friends and family try, with the same valor and constancy as the young buck, to keep me headed to shore, but I am uncharacteristically quiet and removed from the normal, regular patterns of life. Strangely, I am the opposite when I am with him. Like the clown, I smile all the time. I keep up a friendly, funny banter for him and for all the other residents and their families with whom I am locked in this dance of death.
Conversations
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.
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.
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....
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