I am going to share with you in this post a note I wrote on Facebook on January 2, 2010. It lays down some good background info about me and Mom:
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I can feel him lurking outside her door
she won't give in lightly
but she knows the day is coming
when she will no longer be able
to play upon his kindness
and outwit him with cheerful smiles.
Her heart is warm
her mind, wise
She knows he does not intend to steal
that which will be freely given
when at last the hour has come
in which she must choose to go.
His is not an end as I perceive it
merely a transformation:
she will never cease to exist,
but will only quit this place
in quiet elegance.
Twenty-five years ago (dear God, has it been so long?) and a little more, I wrote the above poem about my grandmother. It was after my grandfather had passed away, and before she suffered the massive heart attacks which led to her eventual decline into Alzheimer's Disease and death. At the time I fancied myself a poet, embarking on what I saw at the time as a spiritual duty to help my mother cope emotionally with the loss of her parents. I can hear both my grandmother's and my mother's voice echoing in my ears this moment, as I sit typing this sentence: Lord, what fools these mortals be!
My mother has microvascular dementia. It is not Alzheimer's Disease, but the difference, it appears, is turning out to be academic. In the way and wee hours of this morning, I am sitting in my room overwhelmed with grief for her. I am alone in the world with this grief. I know that there are any number of you out there loving me right now who would not mind if I called you crying incoherently at 3:00 am. Yet the lapse lies not in knowing I am loved and supported, but in finding the words and energy to express the depth of my pain. It is an impossible task. As I sit here, I am so crippled by grief that I am repeatedly struggling to find the home keys on my keyboard and put words to this monster who is stealing my mother.
She is so much more than a mother. She is my best friend in every sense of the word. She and I are old war buddies, staggering down the road, wounded together but surviving. I have been working my entire life (and I do not choose these words lightly or facetiously) to prepare myself for her death. When I was eighteen months old, I toddled up to her near the front door of our house giggling, only to discover that she was crying. In that moment, for the first time, I knew something terrible was wrong with our lives. I didn't understand it then, but that is when I first began to know that I could eventually lose her. For many years I lived in such fear of losing her that I suffered regular premonitions of horrible deaths for her, of coming home or turning a corner and discovering she had been murdered or succombed to some horrible attack. Growing up, hating her as I did then, I could never understand that at his moment and time of my life, I would be able to look back and know that somehow my soul knew then, what was coming, and that I would need all the help I could get trying to process this horrible weight of grief. I am not ready for this battle. Is anyone ever?
When my grandmother passed from puttering through her daily life helping others into Alzheimer's, the fall was sudden and complete, triggered by the massive doses of morphine she was given for the pain of the heart attacks she had suffered. We ended up placing her in a nursing home when circumstances made it clear that we could not provide for her the level of care she needed. It was a horrible, painful struggle to watch her slide downhill to her death. There was nothing elegant about it. With mom, it has been until recently a slight loss of a degree of memory here, a degree of memory there, nothing important had slipped away yet, although she found it terrifying and difficult to cope with what she had lost, no matter how small. Over the past few weeks, it has been progressively more like watching her lose her step and begin to tumble down a mountainside in slow motion, gradually tipping over head first, perpetually just out of my grasp. And I am unable to save her. There is nothing I can do to stop this process. She may come back, and I believe it is likely that she will snap back from this current illness - a sinus/ear infection that is drastically affecting her range of neurological symptoms. But eventually she will slip away into darkness and there will be no calling her back. Tonight, the woman I know and love as my mother is gone from me, and in her place is someone who both is and is not my mother.
There is nothing I can do. I can take care of her needs and comfort her as much as I can, but that is little solace, knowing the magnitude of my loss. I am determined to prolong her time with me as long as possible, to avoid the nursing home like black death, because although no one (outside of my circle of dear friends who live and work in them day in and day out) wants to admit it, that is exactly what they are. My mother has lived her life with an extraordinary grace. Although she would scoff at that, it is true. I believe she deserves to end her life with as much dignity and grace as possible. And God is kind to us. I know that there will be good moments along with the bad, good laughs yet to be had, and lots of quality time left yet to be shared. But today the moments have all been bad. Today I sat for the first time and tried to comfort her when she could not be comforted. I tried to distract her from the scary loop her brain was stuck in and failed. For some reason, she believed for over 40 minutes she had to collect the colored things from her lap blanket and somehow get them to match and trade them for food, and she couldn't get any of them to match. It didn't matter that there were no things, only a blanket, or that she knew that food was on the way and we were going to give it to her without making her accomplish this strange task. After dinner, she could remember feeling that obsession and fear but didn't understand it any more than I did, and didn't seem concerned by it. Tonight, I have her home and safe in bed and I am here for her if she needs me, and I am feeding her the antibiotics our doctor prescribed to fight the infection, and hoping against hope that when the infection passes, so will the clouds of her memory and we will be somewhere back closer to normal for a while, whatever in the hell normal is.
But right now, at the base of my sorrow, for the first time in my life, I want my mother and she is not here. I always thought what Wordsworth by "too deep for tears" was pain so deep you couldn't cry. Tonight I'm learning that what he meant was that you can cry as hard as you want, and the tears will never touch that well of grief. It doesn't even come close.
--------------------------------------------------------------------------
I can feel him lurking outside her door
she won't give in lightly
but she knows the day is coming
when she will no longer be able
to play upon his kindness
and outwit him with cheerful smiles.
Her heart is warm
her mind, wise
She knows he does not intend to steal
that which will be freely given
when at last the hour has come
in which she must choose to go.
His is not an end as I perceive it
merely a transformation:
she will never cease to exist,
but will only quit this place
in quiet elegance.
Twenty-five years ago (dear God, has it been so long?) and a little more, I wrote the above poem about my grandmother. It was after my grandfather had passed away, and before she suffered the massive heart attacks which led to her eventual decline into Alzheimer's Disease and death. At the time I fancied myself a poet, embarking on what I saw at the time as a spiritual duty to help my mother cope emotionally with the loss of her parents. I can hear both my grandmother's and my mother's voice echoing in my ears this moment, as I sit typing this sentence: Lord, what fools these mortals be!
My mother has microvascular dementia. It is not Alzheimer's Disease, but the difference, it appears, is turning out to be academic. In the way and wee hours of this morning, I am sitting in my room overwhelmed with grief for her. I am alone in the world with this grief. I know that there are any number of you out there loving me right now who would not mind if I called you crying incoherently at 3:00 am. Yet the lapse lies not in knowing I am loved and supported, but in finding the words and energy to express the depth of my pain. It is an impossible task. As I sit here, I am so crippled by grief that I am repeatedly struggling to find the home keys on my keyboard and put words to this monster who is stealing my mother.
She is so much more than a mother. She is my best friend in every sense of the word. She and I are old war buddies, staggering down the road, wounded together but surviving. I have been working my entire life (and I do not choose these words lightly or facetiously) to prepare myself for her death. When I was eighteen months old, I toddled up to her near the front door of our house giggling, only to discover that she was crying. In that moment, for the first time, I knew something terrible was wrong with our lives. I didn't understand it then, but that is when I first began to know that I could eventually lose her. For many years I lived in such fear of losing her that I suffered regular premonitions of horrible deaths for her, of coming home or turning a corner and discovering she had been murdered or succombed to some horrible attack. Growing up, hating her as I did then, I could never understand that at his moment and time of my life, I would be able to look back and know that somehow my soul knew then, what was coming, and that I would need all the help I could get trying to process this horrible weight of grief. I am not ready for this battle. Is anyone ever?
When my grandmother passed from puttering through her daily life helping others into Alzheimer's, the fall was sudden and complete, triggered by the massive doses of morphine she was given for the pain of the heart attacks she had suffered. We ended up placing her in a nursing home when circumstances made it clear that we could not provide for her the level of care she needed. It was a horrible, painful struggle to watch her slide downhill to her death. There was nothing elegant about it. With mom, it has been until recently a slight loss of a degree of memory here, a degree of memory there, nothing important had slipped away yet, although she found it terrifying and difficult to cope with what she had lost, no matter how small. Over the past few weeks, it has been progressively more like watching her lose her step and begin to tumble down a mountainside in slow motion, gradually tipping over head first, perpetually just out of my grasp. And I am unable to save her. There is nothing I can do to stop this process. She may come back, and I believe it is likely that she will snap back from this current illness - a sinus/ear infection that is drastically affecting her range of neurological symptoms. But eventually she will slip away into darkness and there will be no calling her back. Tonight, the woman I know and love as my mother is gone from me, and in her place is someone who both is and is not my mother.
There is nothing I can do. I can take care of her needs and comfort her as much as I can, but that is little solace, knowing the magnitude of my loss. I am determined to prolong her time with me as long as possible, to avoid the nursing home like black death, because although no one (outside of my circle of dear friends who live and work in them day in and day out) wants to admit it, that is exactly what they are. My mother has lived her life with an extraordinary grace. Although she would scoff at that, it is true. I believe she deserves to end her life with as much dignity and grace as possible. And God is kind to us. I know that there will be good moments along with the bad, good laughs yet to be had, and lots of quality time left yet to be shared. But today the moments have all been bad. Today I sat for the first time and tried to comfort her when she could not be comforted. I tried to distract her from the scary loop her brain was stuck in and failed. For some reason, she believed for over 40 minutes she had to collect the colored things from her lap blanket and somehow get them to match and trade them for food, and she couldn't get any of them to match. It didn't matter that there were no things, only a blanket, or that she knew that food was on the way and we were going to give it to her without making her accomplish this strange task. After dinner, she could remember feeling that obsession and fear but didn't understand it any more than I did, and didn't seem concerned by it. Tonight, I have her home and safe in bed and I am here for her if she needs me, and I am feeding her the antibiotics our doctor prescribed to fight the infection, and hoping against hope that when the infection passes, so will the clouds of her memory and we will be somewhere back closer to normal for a while, whatever in the hell normal is.
But right now, at the base of my sorrow, for the first time in my life, I want my mother and she is not here. I always thought what Wordsworth by "too deep for tears" was pain so deep you couldn't cry. Tonight I'm learning that what he meant was that you can cry as hard as you want, and the tears will never touch that well of grief. It doesn't even come close.
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