Here we go again.
Hey All,
I'll tell more of the Cassie story soon. I have more of the plot sketched out.
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On the mom book level, yesterday I was reasonably convinced i should keep the background stuff, and then last night I had dreams I interpreted to mean I should cut it out (I don't remember most of the dream, but I remember my mom was in it, and then the roof was horribly leaking, which in my dreaming state i interpreted to mean that too much stuff that should stay outside was getting inside. Which seems pretty clear to me.
That said, I'm rereading it and I think I'll keep it in for now. I can always take it out later. I'm going to yet again send out the book from start on (welcome to the world of being a writer when you look the same stuff over and over and over (or at least I do: there are a few famous writers, and I'm thinking of Isaac Asimov and Georges Simenon (both, not coincidentally, hugely prolific), who would basically write first drafts and have them published)), and let you know the moment I start to get uncomfortable.
Another question I'm facing is where to intermix the stories/interviews, and how to set them off from the rest of the book. I was thinking of making them chapters, but I think I want a bit more separation on them, like an extra blank page. I found a really good place to out the KMF interview, but it was on about page 20 or 30. And then Tiiu's was going to go 20 pages later. They both fit well thematically there, but I only have I think seven of these, and so they really need to be 60 pages apart or so.
So, here we go again. Here is the start of the book. I think it's some really strong writing, some of my best ever.
Thank you,
Derrick
Will You Help Me Die?
A Memoir of My Mother’s Death
By
Derrick Jensen
My life falls neatly into three categories: Before my mother’s diagnosis; from her diagnosis till her death; and after her death.
Karen Breslin
Preface
Helping my mother die was the hardest thing I’ve ever done.
A dear friend is helping her mother with pancreatic cancer, roughly the same cancer my mom had. All I can think to say to her, over and over, is, “I am so sorry. This is the hardest thing in the world.”
Other friends have in the past several years helped someone they loved to die, and all I could think to say to them as well was, “I am so sorry. This is the hardest thing in the world.”
What else is there to say? This is an entire language of grief in twelve words.
#
Over the last few decades, the African proverb “It takes a village to raise a child” has increasingly suffused our social understanding of childrearing. Now, as baby boomers age, it’s becoming clear we need a similar transformation of our social understanding of how we as a society treat elders.
It takes a village to care for an elder.
I began this book when my mother was 86. She had years before begun the long slow descent that—for those of us who make it that far—takes all of us in the end. As her sole caretaker, I, like so many others I know who have acted similarly, slowly took on more and more tasks. And when she got ill, I either stayed in her house, or when she was at the hospital, in her room.
A dear friend often says we need help at the beginning and at the end. This is desperately true. And it is also true that on the main our culture doesn’t treat our elders well. Within healthy, functioning communities, people recognize and appreciate the roles of their elders, the gifts they can and do give to those who are younger, and to their entire communities. At the same time these societies recognize that elders can no longer take care of themselves, and they act accordingly. We in our society do neither of these.
Just in the past two weeks, I’ve talked to a dozen people my age—early sixties—who are taking care of their parents. One has the financial resources to hire outside help, and convinced her mother to accept it, a difficult task in itself. All the others are doing this on their own, which, given the mobility of this culture, generally means without significant help even from their siblings. Most are on a forced march, lovingly and willingly given, but a forced march nonetheless.
And they can’t do it by themselves.
But they do, because they must, and because we all need help in the end.
#
My original plan for this book was to use the story of my mother’s death as a jump-off point to explore not only the emotional and physical toll exacted by taking care of a dying loved one, and not only how this is too much of a task for any individual; but also the ways our atomized, highly mobile society makes this nearly-impossible task even more difficult. Such a book might in some small way help prepare the increasing numbers of people faced with precisely this for what’s to come, and help them avoid some of the errors I made. It might also lead to larger social changes that make this process less difficult for those going through it.
But a book about how difficult it is to be a caretaker would be untrue to what actually happens when helping a beloved other to die. All through my mother’s dying, everything was and needed to be not about me but about her, because it was her death. Yes, it was my lack of sleep, and it was my running my life ragged, but it was her one and only life and her one and only death. The book would need to reflect that. The book would need to be her story.
It would also need to reflect that the process of helping someone you love to die is intimately bound to your shared history; it is the daily breaking and somehow re-mending of your heart; and it is a daily remembering of the awful and beautiful truth that though someone you love is dying, and a part of your world is disappearing forever, life itself somehow continues.
The book would have to be a telling of the love stories that are these relationships between baby boomer caretakers and their elderly parents, and a meditation on familial love, responsibility, loss, and an examination of what it means and looks and feels like to help someone you love to wind down—gracefully or painfully, cleanly or messily, encompassing every feeling, including those you never knew you had—and to help them in the end, in the final words of Stonewall Jackson, “To cross over the river and rest in the shade of the trees.”
And who better to tell these stories than the people themselves? Because I have only the story of my experience of my mother’s death, I spoke with many people who had helped those they loved to die, and have interspersed their stories—of courage, unending heartbreak, exhaustion, grief, and underneath all of this, love—among my own stories, clearly set off and labeled.
What you hold in your hands, then, is not so much a guide to helping an elder to die as it is a communally-told love story to life itself in all of its sorrowful, messy, painful, complicated, and joyous tenacity.
Chapter 1: Death
Regrets are illuminations come too late
Joseph Campbell
In the hours after my mother lost consciousness for the final time, as part of her glide toward death from cancer, I thought of a dozen questions I wished I'd asked her, a dozen things I wished I’d said.
I did ask them, and I did say them, to her drugged and deeply breathing self, but it's not the same. I knew even in that moment I should have lived those questions and statements in the days, years, and decades before her death, when they could have become part of our conversations and our lives.
But I didn't, and I learned that night, as I’ve learned so many times in so many circumstances, that regret is the harshest, most effective, and cruelest teacher there is.
#
I was completely unprepared for both her process of dying and her death, despite death having been increasingly present between us for at least her last ten years.
It wasn’t that she was ill as such, at least until near the end. It’s that death is always present, no matter our age or health. At times death may only whisper, nearly inaudible over the sounds of life, but it’s still there.
My lack of preparedness wasn’t for lack of trying. Decades earlier I’d committed to taking care of her as she aged, including to her death, and for years we’d held reasonable conversations about her future.
I spent time with her nearly every day, and in the air between us the sound of death slowly grew from a whisper to a murmur. I watched as she stopped expanding her flower garden, and watched as she let weeds come into spaces where previously she’d have pulled them. I was there when she decided she could no longer garden at all. The sound of death went from a murmur to a voice as loud as our own in every conversation. I was with her when she decided she could no longer drive, and to this day remember the look of panic, terror, and shame on her face when she could no longer remember how to adjust the passenger seat. I was there—and death was by now keening—when my mother could no longer make it up or down stairs without my arm to clutch, and I was there when she could no longer go up or down stairs at all.
But none of this prepared me for what came after, during our shared forced march toward the end: for the complete physical and emotional exhaustion, the draining away moment by moment of all physical and emotional reserves; for the dogged and damned, almost metronomic inevitability of her decline; for the near-complete unwillingness of my heart to accept this inevitability, no matter what my mind knew about the necessity of death following life; and most especially for the finality of the loss.
#
I’ve learned I’m not alone in this unpreparedness, this exhaustion, this unwillingness to accept this inevitability, the life-shattering finality of the loss. Of course I didn’t think I was the only person ever to lose someone I love. That loss is at least as old as life and death itself. But I learned that about 10 percent of adults 60 or over take care of their elderly or dying parents. And a significant portion of these are taking care of these elders more or less by themselves. Some, including single mothers, are taking care of children or disabled adults while also caring for dying parents.
All of this is impossible. A lone person, I discovered, doesn’t have enough hands, time, or attention to love this elder into death. It can be a disaster for everyone involved, it’s happening everywhere, and it doesn’t have to be this way.
#
In my early 30s, I started a project for which I planned to interview residents at nursing homes about their lives, learn from their experience and wisdom, then try to present this as some sort of coherent whole.
The project lasted only about a half-dozen interviews before I abandoned it when four problems became clear.
The first was that most of the people I interviewed were as confused as I was about life and how to live it well. I realized that wisdom and understanding weren’t gifts automatically bestowed when someone reaches a certain age, like the right to vote or purchase cigarettes; but skills to be learned or earned through practice, like making jumpshots, weaving baskets, playing guitar, or building houses. Sure, some wisdom accretes through time and experience, and the average elder should be wiser than the average teenager: I’m a little wiser than I was at fifteen, at the very least because for every twenty or thirty mistakes I make, I learn enough from two or three to stop making them, so now I make only 90 percent of the mistakes I used to.
I’m reminded of a line by Vine Deloria: “Maturity is a matter of reflection on a lifetime of experience, as a person first gathers information, then knowledge, then wisdom. Information accumulates until it achieves a sort of critical mass, and patterns and explanations begin to appear. . . . When we reach a very old age, or otherwise attain the capacity to reflect on our experiences—most often through visions—we begin to understand how experience, individuality, and the cycles of nature all relate to each other. That state seems to produce wisdom.”
The key word is reflection. And that requires time and attention. And, I believe, it requires rumination, which is defined as both “a deep and considered thought about something” and “the action of [e.g., a cow] chewing the cud.” We bring some new information or experience into our bodies, we metabolize it a little, then we bring it back up and (mentally) chew on it for a while, then swallow it to metabolize it a bit more, then bring it back up to chew over again.
There’s nothing wrong with those who haven’t had the inclination or made time for this process, any more than there is with those who haven’t had the inclination or time to learn how to golf, sew, or perform open heart surgery. But if I wanted to learn about golf I’d want to interview experienced golfers (and play lots of golf). And if I wanted to learn how to live more fully, I’d want to interview those who’ve made a life of exploring how to do that (and I’d want to do it myself).
The second problem was that while the stories themselves were interesting and often moving, and while there were lessons a person could learn from these stories, often these lessons weren’t generalizable or even in some cases meaningful outside of the context of the tellers’ own lives and the lives of those who loved them.
The third problem was that I felt like a voyeur. These stories—of first loves in the 1920s, deprivation in the Depression, losses in World War II, what it was like to live and work in the 1950s—should have been told not to a stranger with a tape recorder, but to a grandchild while playing a board game, to an entire family while sitting next to a lake. I started crying when a woman broke into sobs telling me about the death of her husband forty years prior, not so much at the story itself, but at the fact that she had no one but me to whom she could tell it.
This leads to the fourth problem, which is that each time I went to do another interview, I felt I was entering a hell realm, of terminally bored, lonely, abandoned people who mostly wished they were already dead. It was like entering a Greyhound terminal where instead of the inmates waiting for a bus they were all waiting to die.
#
I’m not saying everyone who puts someone into a nursing home is terrible. My mom put her own mother into one.
My mom had, with my minimal help, tried to take care of her when my grandmother could no longer live on her own.
Until my mother brought her to Coeur d’Alene, Idaho, to live with her, my grandmother had lived her entire life within ninety miles of where she was born, in Lincoln, Nebraska. She’d lived alone for the more than twenty-five years since her husband died of bladder cancer.
He died when I was three. My mother always told me that when I came the last time to his room in the hospital, he roused himself enough from his morphine-induced sleep to tell me he loved me and to say good-bye, but I don’t remember him at all.
I also don’t remember the conditions that led to my grandmother no longer being able to live alone. As I wrote this, my first impulse on not remembering was to ask my mother, who could always be relied on to know family history. But my mother has been dead for almost five years now.
And this is how people fade, how they finally leave the earth, when those who remember are no longer here to carry those memories forward.
For several months my mother and grandmother got along well. But then my grandmother’s behavior became increasingly bizarre. For example, when my mom or I would clean her room, we’d find caches of tiny dried poops under her bed or in her sock drawer.
And my grandmother became increasingly paranoid. This is enough of a familial trait that my niece and I enjoy teasing each other about the “Jensen Paranoia Gene,” with her remarking how significant it is that I live alone in a thick forest, to which I add that there are streams on three sides of my house and a pond on the fourth, meaning I effectively live behind a moat—score one for her labeling me paranoid—and then I point out that she too lives in a forest, albeit with a family, and moreover the forest in which she lives is on an island—score one for me. Let those who are without paranoia cast the first suspicion.
Finally, my mother could no longer take care of her mother. When in the midst of yet another of my grandmother’s mental breakdowns, as we loaded my grandma in the car to take her to the emergency room, my grandma looked at me, betrayal on her face, and said, “Even you’ve been seduced by the CIA.”
We helped her back to Nebraska, and my mom paid for and set her up in a nursing home. Because a joke between my mom and grandma had always been that they both wanted to spend their last years “sitting on a couch, eating chocolates, and reading trashy novels,” each month my mom would go to a used book store, buy a box of novels, and mail them to the nursing home. My grandmother became the institution’s de facto librarian.
And because my grandmother had always liked game shows, my mom bought her a tv, which—and I mention this because it seems to be a standard part of familial elder-care behavior—we later learned was stolen by my mom’s sister, in the home family version of Let’s Make a Deal, with my aunt taking home the “19-inch screen surrounded by an attractive wood-grain high-impact plastic cabinet with rounded corners for a modern look, with a retail value of $589.95, but actual total cost to her: free on this surreptitious trip to visit her mother;” and my grandmother getting the zonk.
#
Every time my grandmother visited when I was a child, she’d make several ten-inch pans of cinnamon rolls. One time when I was about six or seven, we got to talking at the kitchen table as the rolls cooled, and I ate an entire pan of them. Instead of chastising me for that—and there was no reason for her to, since she encouraged me—from then on whenever she made cinnamon rolls, she made an extra pan just for me.
She had long-since given her recipe to my mother, who for the rest of her life continued to make cinnamon rolls for me.
When my mother was about 75, for Christmas she gave me a sealed envelope. Inside were several pieces of paper, each divided into squares by inked lines. Each square was a handwritten coupon for a pan of cinnamon rolls.
By then she was old enough that I knew I’d rather have the coupons after she was gone than the cinnamon rolls now, so I kept them.
I did, however redeem a few.
Her cinnamon rolls were really good.
#
A friend took care of her mother, for the most part by herself, through ten years of her mother’s memory decline. At first it wasn’t too difficult: reminding her mother of an appointment here, helping her with shopping lists there. Then she started having to watch her mother so she wouldn’t, for example, fill her entire grocery cart with cabbages and not know why; and far more worrisome, so her mother wouldn’t wander across the parking lot and into the street. Then she had to place notes around the house: wash your hands after using the toilet; don’t pick up knives by their blades; when you want to sleep, flip the switch down to turn off the light. Her mother refused to allow her to hire a caretaker, so she convinced her mother—a former teacher—that the caretaker was a student who had hired her mother as a tutor. Her mother’s memory continued to worsen, and my friend’s life continued be increasingly consumed. “It’s like having a young child,” she said, “except that sometimes children will listen to you. She’s still my mother, and still thinks she should make all the decisions.”
My friend started to look into nursing homes. Any that weren’t warehouses cost $12,000 to $14,000 a month, and as soon as her mother’s money ran out, which would be in a few months, her mother would have to be removed to one of the human warehouses.
Fortunately, my friend is Estonian—her parents fled to the United States as refugees after World War II—and found a perfect place for her mother in Estonia that only cost $1,300 a month, with care better than any of the places she saw in the United States. My friend still lives in the United States, and so only can visit her mother for a month out of the year, but her mother is happy, and my friend has her life back.
#
My earliest memory of my mother is her waking me by poking her head inside my bedroom door and saying “Good morning, Sunshine.” She left, and when I hadn’t gotten up after a few minutes, she returned to sing, to the tune of Reveille, “It’s time to get up, it’s time to get up, it’s time to get up in the morning.”
I stumbled out of the room in my pajamas, made my way upstairs to the main floor of the house, and found my clothes for the day stacked and warm atop a register for the house’s forced air heater. I dressed, then sat cross-legged on the register, looking out the window into the snowy morning, eating the cereal she’d brought me, leaving the last of the milk for the cat who’d been waiting for me to finish.
#
I’ve spoken with—and perhaps you have too—people who say they remember events from much earlier in their lives. Some say they remember events from within the womb.
They may; I don’t know. Memories are strange in that wishes and dreams and thoughts and passages we’ve read can all bleed into memory until we’re no longer clear what happened, versus what we wish happened, versus what we think might have happened, versus things that never happened at all. Or rather we’re clear on what we experienced, but the relationship between what we experienced and what happened in all physical truth may be tenuous or nonexistent.
I sometimes wonder, if after we die we were to watch a moment-by-moment account of the life we just lived, would we be surprised at how strained was the relationship between what we remembered having happened, and what did happen?
That said, whether or not we consciously remember, our first relationship is with our mother. She is for a time our entire world. She feeds us with her own bodily fluids. Her heartbeat is at first our own, and the singing of her blood through her and then our veins is the first love song we hear and learn. Her voice is the first we hear. She is everything to us, and does everything for us.
Most of us, myself included, forget this ever happened.
#
The first thing to go, in the time following my mother’s death, was my ability to recall her voice. In dreams it remained as always, but during waking hours the internal reconstruction became day by day less accurate, more brittle, more distant, more an echo.
She’d never liked having her picture taken or voice recorded. I don’t think it was quite that old belief that recordings steal your soul, although that was part of it. Another part was that she didn’t enjoy people making fusses over her, and she considered even taking a picture a fuss. And finally was the knowledge that, despite the photos she had of her children, grandchildren, and great-grandchildren, including some great-grandchildren she’d never met, a photo or any other artifact is not a substitute for a relationship.
Perhaps as a consequence, I have only a score of so pictures of her, from when she was a toddler to a few years before her death. A handful of these are from her last 35 years, and I have no recordings of her voice.
I guess I’m okay with that, not only because the Serenity Prayer tells me I have to be, but also because for the most part I agree with her. Don’t get me wrong; I like photographs. I’m fascinated by photos of many events to which I was never a witness, whether it’s my mother at three years old, my grandfather standing handsome and looking like a young William Holden next to his Model A, or Confederate soldiers captured at the Battle of Gettysburg. But as well as fascinated, photos—no matter the subject: distant events, long-dead pets, or still-living friends in long-dead times—make me melancholy. Photo collections remind me of cemeteries: memorial gardens for moments, feelings, relationships that have passed on.
I’m not slamming photos. Books are the same. Paintings. Sculptures. They’re all moments frozen in and removed from time, like so many tombstones, where we go to commemorate the dead.
None of which means I don’t wish I had more photos of my mother, and a recording so I could once again hear at least a simulation of her voice.
#
I so often think about how when anyone—human, nonhuman, plant, animal, fungi, bacteria, virus, it doesn’t matter—dies, an important part of what dies immediately is his, her, or its memories and experiences. Even if others participated in these experiences, the experiences themselves were never completely shared.
Let’s say you and I share time. We do things together. But we don’t share experiences, since you’re you and I’m me. Even if we make love, and even if this love is mutual and profound enough to leave us both in tears, you still have your experience of it and I have mine. My experience is not yours. Your experience is not mine. Our bodies may join, we may look in each other’s eyes, but you’re still looking in mine and I in yours. And when I die, that experience and every other will die with me.
4The woman at the nursing home who told me of the death of her husband decades earlier is by now long-dead, and so is her experience of his death. I can write about it and you can read about it, but neither of us experienced it. We may or may not have experienced something similar, such that her story may or may not help us remember—re-member; to make again a part of us—that experience, just like a recording might help me re-member my mother’s voice, and a photo might help me re-member her face. But the experience itself has passed away.
###
I should get in the habit of cutting and pasting what were a few of my favorite lines. I’ll try, since I think it would be fun to know which lines were the favorites of an author I like.
in this batch
What else is there to say? This is an entire language of grief in twelve words.
#
But a book about how difficult it is to be a caretaker would be untrue to what actually happens when helping a beloved other to die. All through my mother’s dying, everything was and needed to be not about me but about her, because it was her death. Yes, it was my lack of sleep, and it was my running my life ragged, but it was her one and only life and her one and only death. The book would need to reflect that. The book would need to be her story.
#
; it is the daily breaking and somehow re-mending of your heart; and it is a daily remembering of the awful and beautiful truth that though someone you love is dying, and a part of your world is disappearing forever, life itself somehow continues.
#
it is a communally-told love story to life itself in all of its sorrowful, messy, painful, complicated, and joyous tenacity.
#
In the hours after my mother lost consciousness for the final time, as part of her glide toward death from cancer, I thought of a dozen questions I wished I'd asked her, a dozen things I wished I’d said.
I did ask them, and I did say them, to her drugged and deeply breathing self, but it's not the same. I knew even in that moment I should have lived those questions and statements in the days, years, and decades before her death, when they could have become part of our conversations and our lives.
But I didn't, and I learned that night, as I’ve learned so many times in so many circumstances, that regret is the harshest, most effective, and cruelest teacher there is.
#
This leads to the fourth problem, which is that each time I went to do another interview, I felt I was entering a hell realm, of terminally bored, lonely, abandoned people who mostly wished they were already dead. It was like entering a Greyhound terminal where instead of the inmates waiting for a bus they were all waiting to die.
#
And this is how people fade, how they finally leave the earth, when those who remember are no longer here to carry those memories forward.
#
Memories are strange in that wishes and dreams and thoughts and passages we’ve read can all bleed into memory until we’re no longer clear what happened, versus what we wish happened, versus what we think might have happened, versus things that never happened at all. Or rather we’re clear on what we experienced, but the relationship between what we experienced and what happened in all physical truth may be tenuous or nonexistent.
I sometimes wonder, if after we die we were to watch a moment-by-moment account of the life we just lived, would we be surprised at how strained was the relationship between what we remembered having happened, and what did happen?
#
That said, whether or not we consciously remember, our first relationship is with our mother. She is for a time our entire world. She feeds us with her own bodily fluids. Her heartbeat is at first our own, and the singing of her blood through her and then our veins is the first love song we hear and learn. Her voice is the first we hear. She is everything to us, and does everything for us.
Most of us, myself included, forget this ever happened.
3
The first thing to go, in the time following my mother’s death, was my ability to recall her voice. In dreams it remained as always, but during waking hours the internal reconstruction became day by day less accurate, more brittle, more distant, more an echo.
#
Photo collections remind me of cemeteries: memorial gardens for moments, feelings, relationships that have passed on.
#