Friday, October 17, 2008
I want to remember the details of this once-in-my-lifetime event, the death of my mother, by writing this. I want to turn toward my feelings rather than pretend I can hide from them. I finally got away from my desk Friday at 2:30pm and drove the back roads from San Geronimo to Petaluma Valley Hospital where my mother has been since Wednesday afternoon. I knew I’d be meeting Karen there although both us got delayed by Friday afternoon traffic.
My plan was to be with my Mom, Rae Russel, and see for myself how she was doing, see if she showed any improvement or decline from yesterday, Thursday. Young “Dr. K,” as he’s used to being called (his last name is Kawalek), told me yesterday that my Mom was dying. He seemed to accept my needing some time to get used to this, his new prognosis. I’ve become accustomed to taking what time I need to accept any doctor’s negative prognosis, in this case replacing my month-long perspective that she might still beat back infections in her body and regain full consciousness, however brief it might be. It took me 24 hours to accept his perception as accurate, have it feel right for me too. If my Mom showed no improvement today, if she was still struggling for each and every breath, then I’d ask Dr. K to confer with me, along with clear-headed Karen, one more time. We’d then decide how to proceed, either allowing Rae to fight on, or perhaps alter our course of action to what hospitals call “comfort care” or “palliative care.”
The question was whether to stop her IV and food and antibiotic. Thirty-year-old Doctor K was willing to continue, I increasingly realized, just to comply with my request, not because he thought treatment was any longer giving my Mom any chance for recovery. His opinion, based on his experience watching people near death and watching people die, which he voiced yesterday at the foot of Rae’s bed, was: my Mom was dying. He called her current breathing—fast (about 100 bpm), shallow and steady—a “death rattle.” Jeez. Maybe so I thought, but I’m not willing to concede this yet, nor act accordingly by stopping supply lines of fluids and food and instead giving only palliative painkillers like morphine. Morphine would relax her body so her struggle for each breath was not so intense. I just didn’t want to push her consciousness further down unless she was clearly in pain. This weeks-long struggle I had grown so used to was all about bringing my Mom to fuller consciousness.
True enough my Mom looked worse today, laboring to breathe, quickly and shallowly. The skin on her face looked tighter and, to use Karen’s chilling, accurate word, she appeared more “skeletal.” Damn if she wasn’t thin for the first time I can remember. Her life-long struggle with her weight, much of it painfully in front of me as a child—and why I made the unconscious childhood vow to never be overweight—and now her dream was realized. She’s thin, but likely dying. What a shame she can’t be up and about to show off her new look. She would have thought that she, a woman with self-described “big bones,” was too thin, but that can easily be fixed with a multi-day course of ice cream eaten at home by spoon. Another irony: what horrified me to watch for years as a child—my mother eating ice cream uncontrollably and with self-loathing—I would now gladly offer her in loving service if it were needed.
I made another short video of her breathing because I wanted to see and absorb it all, not look away—in fact all the more so because a part of me wants this not to be happening to my mother. But it is. So I choose to be with it, stay trained on the experience and as many of its details as I can. I want to learn from this and accept it too, as part of life, the defining part of life we call death. Just as much, I want to make a technological record, more powerful than glorious photography, the recording method of choice for my mother, Rae Russel, professional photographer, and also my father, professional photographer Alfred Gescheidt. I want to see this again should I ever wonder, days or years hence, why I made the care choices I might make today. I’m not a videographer but I’ve seen video’s power and advantage over film in capturing and conveying these events and my Mom’s condition. I also believe she would allow this because, for one, she’s a documentary photography. Second, she loves me and trusts me and knows I love her. I’ve often struggled with situations where putting a camera, still or video, to my head would remove me from the moment and turn me into a dispassionate observer. I had no such hesitation today.
Rae’s Petaluma neighbor and friend Cecilia Nunes came by to see her again for about an hour. She hadn’t seen her in days and with this distanced objectivity could assess any change in her condition more clearly than I could. I also left her alone with my Mom for about 20 min. to talk to her privately. Afterwards, she said she appreciated this time to say hello and goodbye to her friend Rae, a no-nonsense, freethinking woman she admired in case Rae didn’t live until her next visit.
Near the end of her stay I followed through on my promise to phone another dear friend and neighbor of my Mom’s, Rick, and tell him he could join us at the hospital. (I first wanted my alone time with my Mom.) Rae has, over the past couple of years, they would both playfully admit, adopted Rick as her third son. They both benefit from an obvious love between them: he has found an adoptive mother who accepts him completely, and she, living in Sonoma county, has an attentive son who lives nearer by than me (in Marin) and my brother (in SF).
I told Rick that Karen and I would be here in the hospital with my Mom and he said he’d come right over, maybe bring along his grandmother (who later decided not to visit).
I used my alone time today, from about 3:30 to 4:30pm, before Cecilia or Karen arrived, to apply my friend Greg’s advice from this morning. He suggested speaking to my Mom alone, saying whatever I needed and wanted to say to this woman who brought me into the world. I’ve done this many times before already, but it felt right to do again now. This could be my last chance to do so.
I told my Mom I loved her; that I knew she loved me completely; that she was a great, loving, devoted mother to me for all my life, both when I was young and even today as a grown man; that I had felt this, even when I had to break away from her as a teen and we had our share of conflicts, always overshadowed by her bigger conflicts with my brother; that I consider her, and always have, even as a teen, a strong, decent woman I admire for traits including her unfailing honesty. She was incapable of guile or of bullshitting. She could certainly be blunt, but she would never, ever lie. By contrast, I learned the habits of the “pleaser” as a child and can still catch myself being “nice” rather than honest. Rae has less of this conditioning and I can still learn from her to this day.
And did I mention enough times that she has always loved me unwaveringly and unconditionally all my life, that I not once doubted this? How many children can say this, I wonder? How can this gift ever be fully measured? I don’t know that anyone else has been this way with me, nor ever will again. I even know, thanks to her aforementioned honesty and straightforwardness, that she wanted babies from the get-go while my Dad was, like me today at 48, not keen on having children and the accompanying responsibility. (He was and still is a great, loving and devoted father to me but to this day has trouble believing this because his own guilt about leaving during their separation blocks his view.) My Mom went ahead and got pregnant because she was going to have kids and nothing, not even her husband, was going to stop her. I owe my existence to my Mom by many counts.
I put in a request at the nurse’s station to call Dr. K to our room, #32. Fifteen minutes later he still hadn’t come so I went back out and found him on the phone at the nurse’s station, talking about another patient. I wrote and quietly slipped a note in front of him, trusting he’d read it and respond when he could: “My sister-in-law Karen and I are with my Mom now and would like to speak with you as soon as you’re able. – Jack”
I went back to the room, and Cecilia said goodbye. A few minutes later Dr. K came in and joined Karen and me. This all played out like a carefully blocked stage play, exits and entrances neatly dovetailed in a way I would only appreciate more fully afterwards. In retrospect, I see how the evening’s events were choreographed so each person was present for just what he or she needed, whether or not it was wanted. I’ll say more about this later because it points to something mysterious and remarkable.
Dr. K again stood near the foot of Rae’s bed, as he had the night before, with his back near the wall of the narrow 12’x20’, wonderfully private room Petaluma Valley Hospital had graciously given us. Now only Karen and Rae and me were his audience. I told him again where I hoped we were with my Mom, but that I was more open to being convinced, after another night and day of observation, that she was not recovering. He told me for the second time in two days his differing opinion: that my mother was dying. This is, he gently maintained, what dying can look like: her rapid and shallow breathing and her body laboring to do so, different from how she breathed with pneumonia earlier in her struggle.
“What do I know about dying?,” I thought. I have never seen anyone die. I can count, precisely, the number of dead people I have seen in my life—just three—and know who they were, in chronological order. The first was my maternal grandmother, Rae’s mother, Ida. I was six or seven and I remember most my mother and her family crying in the front row of the service with the open casket I was allowed to look into if I wanted. Apparently even at that age I was curious enough to risk whatever shock some people experience, and my mother, as always, had a lovingly loose leash on me and trusted me to know my own limits. Dr. K, and most doctors, have seen a lot more dead and dying people, and know a lot more about it than I do.
We spoke for about 10 minutes, this directly and calmly. I, and Karen too, came out the other side convinced that his experience correctly informed his opinion here. And then he admitted that, despite my wishes for no morphine to be given my Mom, he had given her some. After seeing her earlier this day and speaking with other hospital staff including nurses, he determined that she was struggling hard and that it was right to give her a small dose of morphine as a painkiller and muscle relaxant.
Ordinarily I would have erupted at this news. I expressly said I did not want her given this or any powerful narcotic that would knock down her consciousness further than it already was unless she was clearly in pain. But he volunteered this disclosure now, he did so without prompting, she was no longer reacting the pain of a needle piercing her skin, and how Karen and I and Andy yesterday experienced my Mom, and because she had not only not inched forward in her recovery but had declined, all told me he did the right thing. I was coming to accept his view of my Mom’s situation. I can’t fully account for my shift here, perhaps I just finally integrated all the bits of information with my own emotional journey, over time, and my experience of her today. I also realized this is surely a familiar phenomenon in hospitals, family slowly coming to accept what staff can see more plainly from a distance: your loved one is not going to recover. The trouble is, our family already experienced an exception to the medical numbers: my brother’s miraculous recovery from death’s door after almost a month in a coma. No doctor—just some of the amazing ICU nurses—considered it likely. I was like the man I met on my first trip to a U.S. casino, in Atlantic City, NJ. He told me his own first visit casino visit as a teen, in which he won big, was the worst thing that could have happened to him. He, like us with Andy, got emotionally wired for great outcomes.
I don’t trust doctors as a rule, as I think more people in previous American generations used to, but I just KNEW in my gut this doctor was not trying to end my Mom’s life sooner for the hospital’s convenience. I felt before and still feel now he is a decent man and I trust him. How DO we come to our opinions about other people? Increasingly, I trust my instincts and intuitions.
I’ve been forced—okay, I volunteered—to practice, for the second time, the painful art being a patient advocate. I can’t imagine being an inpatient without a trusted advocate, because hospitals are a terrible place to get well, as even hospital workers freely admit. And of course many lives get saved in hospitals. Go figure. Instead of surrendering the decision making to doctors, I have them inform me, or better yet US, so I, better yet WE, can choose what’s best for my disabled Mom. A couple of weeks ago another doctor suggested morphine to “comfort” my Mom, and I knew this was wrong to do, that she was not done fighting for her life. My mother is so completely vulnerable to the effects of my decisions; just as vulnerable I was to her choices when I was a baby.
Karen—thank you Karen for being clear and discerning and here with me now—and I now agreed with Dr. K. We chose a new course of action based on Dr. K’s opinion. From what he’s seen over Rae’s three days here, and from seeing others in this condition, my Mom would likely not live through this night. We made the transition; we okayed his suggestion to send in a nurse to remove the IV drip, the nutrient drip and the antibiotic for her urinary tract infection. We would remove all the machinery that has been sustaining her for weeks; unhook her from machines she had said at the outset she did not want to live hooked up to.
This was always clear, for Rae and for us, but what about hooking someone up to machines temporarily to make a recovery? Is this different? And how long is temporarily, anyway? And for that matter who tells his family (and how), with eyes closed and full consciousness diminished, “Yes, I want to live hooked up to machines?”
While digesting Dr. K’s guess that this could be my Mom’s last night, I moved my chair closer to her bedside, near her head that was turned toward her right side where I was seated. I agonized for another minute on one other matter: should I remove the constrictive oxygen mask that was giving my Mom more 02 than was in the room air? I asked Karen her opinion about it and she (wisely?) offered none. The room had perfectly adequate 02 for Karen and me and any healthy person. I decided I would take it off so I could much better see my Mom’s face and if it made any difference to her. I could always put it back on. I wonder now if you reading this consider this action incidental or monumental. What would you do? If we were all wrong, if my Mom still had life in her, simply dialing down her oxygen to room levels wouldn’t kill her. And if it did kill her, I would know just how perilously close to the end of her life she really was. I simply have no experience with this situation with which to judge. Mom, I’m not trying to kill you! I’m still completely open to your making a miraculous recovery, setting a Bay Area record for the family with the greatest number of people who made it back from the brink of death.
It was 5:45pm. (I know this from my cell phone’s call log.) Before the nurse arrived, I called Amy to tell her what was happening, that I was going to stay at the hospital a few more hours—on “death watch”—then decide whether to stay longer. Amy asked me again if I wanted her there to support me and I said no. I told her the truth, that I didn’t need her there. “Come only if you need to be here for you.” She did not; it was too painful. I confirmed with Karen that Andy had had enough; that he had said his goodbyes to Rae yesterday. I was and remain clear that people should be free to choose how much of these kinds of experiences they want and can handle. Then of course life presents you what it does.
I had an insight earlier today about this. If I was destined to be at my mother’s bedside for her death—something I have always thought I wanted to do, for my Mom as well as because of my own curiosity about death—then it would happen. If it was not meant to be, no effort on my part could make it happen. Meaning if I wasn’t fated to be a witness I could sit on a death watch for days and then she would die while I was on a 20-second pee break.
I realize I used to struggle with this question of how much control we have over events in our lives, decades ago, when rushing for the subway in NYC. Logically, the sooner and therefore longer I’m on the platform, the more likely I’d catch my train to work. Therefore I should run down the streets and get to the station ASAP, Jack. But after running my ass off numerous times, flying down the steps, through the turnstile, sweaty and stressed out—I often missed a train by one second. So I wondered maybe if I’m meant to make the train, I’ll make it; if I’m not, I won’t. I had the thought so completely insane for a born-and-bred New Yorker, it probably marked me for future deportment to California: Relax. Have a little trust that life will lead me where I need to be. A simple behavioral difference on the outside I could still only occasionally put into practice—slowing down, the result of a completely different philosophy for life on the inside.
I took my Mom’s oxygen mask off and laid it aside. Now I could see her face clearly even though the elastic straps left marks on her cheeks. I thought the chilling thought again: am I killing my Mom? Or as we say with those we love, euthanizing her? Am I performing a milder version of the mercy killings depicted in the endings of Clint Eastwood’s film, “Million Dollar Baby” and Milos Forman’s “One Flew Over the Cuckoo’s Nest?” I know for sure my Mom does not want to live unconscious in a hospital bed, so just put her out of her misery.
Again I answered this worry with the knowledge that if merely reducing her oxygen intake a few percentage points was enough to kill her, then indeed she was hanging by a thread. Doing this would not have killed her during any of the past four weeks of her hospitalization, I could always put the oxygen mask back on, and nurses had yet to unhook her drips.
I can’t recall the exact order of events from here. I want to remember what happened, and writing helps me do so, but I know that whatever I write will become the story I forever remember. Such is the nature of writing, or the nature of trying to recreate any event that no longer exists; it lives in just one moment and then is gone forever. The rest, including this journal, are only mental re-creations, a phantom world of the mind, relegated always and only to past and future fantasies. Of course, I spend a lot of time in the past and the future; “Lost,” as one of my teachers puts it, “in the world of the mind.”
My Mom’s breathing changed. At the end of about every fifth short, quick breath she would exhale heavily and then pause…no in-breath following…no more breathing…My first gut reaction to this change, making no logical sense, was that she was intentionally expelling more air, more life force, willingly pushing the air—her very life—out of her body. She was getting on with this, intentionally pushing toward death. My rational analysis kicked in and said she can’t possibly be doing this consciously; her consciousness is too suppressed and unavailable to communicate with me or anyone through her body’s movements or speech, completely absent these past three days in Petaluma.
The nurses came in and unhooked her IVs, quietly, quickly, and respectfully. They gently asked Karen and me if we wanted anything to drink. We each already had a coffee from before, had set them aside, had no interest in food or drink. I asked for water, which they brought a minute later. They left and again pulled the door shut to our private room to leave us alone for the night. I later realized they have performed this service before.
I stayed at my Mom’s bedside and reached over the railing to touch her hands and arm and forehead. Only her left eye was open a crack. I gently pulled each eye open to see if I could make contact with her. No more neuro exams now, I was looking for eye-to-eye connection if any was still possible. I can often sense a semi-conscious person’s degree of awareness this way. I met only a blank stare from my mother’s eyes. Her left pupil was noticeably more dilated than her right, a sign I was told earlier of likely brain dysfunction. Her breathing continued with its several breaths, short and shallow, followed by the big exhale, followed by the new long, chilling pause…will there be a terminal breath? Is that what this is leading to? I’ve never seen this before, and I assume they vary, so how could I know? Is this really happening? Is this my Mom dying? Am I really here to be a witness, as Karen is witnessing from her position off the corner of the foot of my Mom’s bed?
Seems to me that many of life’s big, dramatic or traumatic events—births, deaths, marriages, car crashes, skydives—have a surreal, “Oh, wow, is this really happening?” quality to them. This is accompanied by a simultaneous, automatic attempt to match the experience in the moment to its preconceived image. The image is created by hundreds or thousands of past attempts to envision this future event, finally happening in the present moment. Is this what my Mom’s death is really like, now that I’m here for it in a ringside seat?
I talked to her now, told her again it was still her call, that if she wanted to live we’d love to have her back, but if she was ready to go, then I could let her go. Her breathing, after several more minutes, began to lessen, diminish in intensity. What?! Maybe only 10 or 15 minutes had elapsed. Could this be happening so quickly? Yes, it was, and now I knew it with certainty. I wondered if I would flinch or recoil or just couldn’t handle what was happening. I checked inward emotionally.
In a flash I remembered, as I have for decades now, that when my Dad left our house—my parents separated when I was 11—my mother sometimes sobbed in the middle of the night. If I couldn’t escape the sound of her pained crying, so excrutiatingly painful to me, I would go into her room, trying to ease her pain and my own, willingly taking on the roll of comforter and caregiver, in those minutes switching roles with my caregiver. I had the pure intentions of a child, motivated by love, who would do anything to ease my mother’s suffering. Looking back on this, I see a beauty, a poetry in the act, a child willing to be there for his mother, two beings in a mutual relationship of love and support trading places. I’ve also learned that I, like any child, simultaneously needed to save her so she would survive and keep loving me. This was one of my formative childhood experiences, both poignant and cripplingly painful and to be repeated, training into me behavior that would serve me well in this life, used to being with suffering people, their injuries, their needs.
Flash forward 37 years and I am again at my mother’s bedside. I am again the son aiding my beloved Mom, but also now a gentle adult man with all this self-awareness flashing and my love for my mother welling in me. And more: there is also a joy for the sweetness of my own love filling in me in this powerful, once-only life experience.
After another perhaps 10 minutes, her breathing downshifted again, becoming steadily weaker. Holy shit, she really is dying. I have no doubt. I look up and over to Karen, thinking: do you see this? She is crying and I can’t remember the last time I’ve seen Karen cry. She is more private in showing her emotions than I am. She is resilient when she has to be, just like my Mom. I’ve always believed this is one reason my brother chose her as his life partner, whether he would say this or not, whether he would concede a causal link, knows it consciously or not.
I am crying now too, of course, as I watch my mother relaxing her body, not working so hard with her chest to push air in and out. Her breathing is continuing to diminish, becoming more soft and gentle. I know I have very little time with my Mom in this current state. I move closer and stroke her head and her cheek, as she has done a thousand times to me when I was young. She would comfort me at my bedside when I was sick, never concerned about getting sick herself, or just to say goodnight.
I told her in a softer voice, managed through my own gentle sobbing, “It’s was okay to go now, Mom.” “It’s okay, it’s okay, it’s okay to go.” I was whispering now. “Be at peace.” And, “I’ll be okay. I’ll miss you but I can handle this, I want you to be with your mother now, be with Ida.” (Before she lost her ability to speak she would occasionally be talking to Ida, her mother and the only grandparent I met. In a video recording from four weeks ago she says if she ever prays to anyone, it was Ida.)
And I suddenly heard myself whisper: “I love you Rae-ala.” Rae-ala is her childhood name for herself, the little one living inside my Mom, just as inside me there lives, even now, simultaneously now, little Jackie, the innocent child who wants only to love and be loved, who comforted my Mom when she needed comforting. I kept saying these things to her, loving my Mom with words, my fingers stroking her cheek and forehead, so aware these were the last moments I would be able to touch her warm skin.
I closed my eyes for a moment, rather than watch, not because I was afraid to see, but because I wanted to fully experience this and wondered if my focus on using sight, a photographer’s habit, born and bred into me, the son of two photographers, was distracting me from more subtle perceptions that might now be possible. Nothing. I opened my eyes again and looked and looked, wanting to take in all I could: all the life, all the death. This was soft and sweet and tender and breaking my heart open. My mother’s breathing continued to diminish, becoming fainter and fainter, dissolving into nothing. Any minute, any moment, and I knew her breathing would stop.
So soon after I removed her oxygen mask, my mother, dear friend and biggest fan, woman who pretty much didn’t ever—or couldn’t ever—stop talking and whom I loved with all my heart, stopped breathing. She was dead. I kept lightly touching her head and kept talking to her gently, sweetly. Her body remained warm for the next hour and a half I remained in the room with her and Karen. There was a sweetness in the space, warmed by our hearts and hers. Karen spoke to this, another student of the mysteries of life and death and life beyond what our five senses perceive. She reminded me something I’ve read before, that a soul often lingers near the body for a time. I’ve read and heard accounts of people perceiving wondrous visions and sensations in this setting. No matter how I might long for this, no such things happened for me now.
In just one minute, or perhaps two, Rick walked in the room. I was at my mother’s bedside crying, but the timing of his entrance immediately struck a chord. He just missed her death, like in a bad stage play I’d critique for its cliché timing. He didn’t realize at first what had happened, that she was gone. When Karen told him, he lost it. He demonstrated his love for her in his way—by being angry, by wanting her back. He was not yet ready to let her go.
The timing was just too close. Rae, I’m convinced, did not wait for Rick because he would have pulled at her to hold on, or he simply would have been in great pain, refusing to lose another loved one. This was not his first experience with death and great loss. I contrast his life experience with mine; at age 48, this is the first time I’ve lost someone so intimately involved in my life, that I knew so well for so long. And I was also ready to let go of her at the end.
All the people who wanted to be in the room for Rae’s death were present. Just as significantly, all the people who did NOT want to be present for her death were not suddenly caught in the experience. The next day Cecilia called to ask about Rae and I told her Rae had died only 30 minutes after she left the room. She replied, “I guess she didn’t want me there.” “Did you want to be there?,” I asked? “No, not really,” she hesitatingly admitted, not wanting to hurt my feelings, I guessed. She added that Rae’s labored breathing reminded her of another loved one in his last moments and it was just too upsetting. And so it was orchestrated. My Amy would have been there for me if I had asked her to, but didn’t need to be there for herself.
I’ve read about this phenomenon before, what I’m calling “orchestration,” most recently in Bernie Siegal’s “Love, Medicine and Miracles.” In fact, of all the pages I could have read about later this night when I was ready for bed, I found Siegal’s words on this topic. The dying have unusual access and ability to coordinate and affect events in ways we would assume impossible because they are in such a weakened physical state. But this last night, the orchestration was just too perfect. I also know I won’t convince anyone who doesn’t want to believe such things, nor would I try.
I moved away from my Mom’s bed, to the back corner of the room near the window, leaving physical and psychic space for Rick to grieve at her bed. I called Amy to tell her my Mom had died. The cell phone call log later showed I called at 6:08pm. Jusdt 23 minutes after my first call to her. This means my mother died in about 20 minutes from the time I removed her oxygen mask.
Today, like all my days at my country house with Amy, I will put birdseed in our bird feeders, just like my Mom did all her life at her houses, and I’ll think about her. I’m more touchy-feely about birds than she was, and most everything else too, but she’s the first birder I knew. She taught me how to use a bird guide, binoculars, to identify chickadees, nuthatches, cardinals, blue jays, downy and hairy woodpeckers and so on, and to appreciate their visits. Later I’ll walk with a friend into the acres of woods our house sits at the edge of, and think of my Mom here too. She’s also the first nature lover I ever knew, a dirt worshiper before this phrase appeared on Bay Area bumper stickers. She has given me so much. She was there, loving me, for my very first breath of this life and I was there, loving her, for her last.
- Jack Gescheidt, Oct 2008
Rae Russel (my Mom)
Born May 16, 1925
Died Oct 17, 2008
