A visiting old friend provides just the support I desperately need to survive being lost
in the overwhelming vortex of my former partner's nasty, tumultuous, angry, bitter journey to her death.
As I sit here writing, the incredibly sensual perfume of Night-blooming Jasmine (in its second blooming this season) wends its way in through the window, wrapping me in its healing musky tendrils. Layer upon layer of cricket chirping and cicada buzzing embroiders the night quiet, giving the silence a gently calming cadence.
There’s been–mercifully–little sign of the unremitting, punishing heat that is our usual fare in summer. Instead, the weather through August and September has, for the most part, continued to be gentle, moderate and easily livable.
Not so my life these past six weeks since last I wrote here. I’m feeling ravaged. Scoured by what I’ve been taken through in my journeying. In these past few days, as I’ve begun to come down from all that I’ve been immersed in, I’m feeling just how frayed my edges are, just how deeply depleted and utterly exhausted I truly am.
It’s as though I’ve been through a sojourn in some deep, tormenting circle of hell. Barely keeping afloat in the overwhelming sea of horrendousness that has marked the continuing unfolding of my former partner’s path to her death and my continuing enmeshment with it/her. The balance and “generic” compassion that I had been able to find in myself during the first month of my involvement in this process became harder and harder to come by. What had been an already profoundly challenging situation through all of July became an escalating nightmare of unbelievably melodramatic baroqueness as we moved through August and into September.
Every time I’d carefully set safe boundaries for myself–scheduling myself to be with her for only small parts of two days a week–some new crisis or catastrophe would befall her. Incapable, it seemed, of resisting the magnetic vortex of her troubles, I’d find myself drawn back in to spending more time on more days with her doing caregiving. This always in addition to numberless chivvying phone calls to the various people responsible for moving along her applications for Food Stamps, Medi-Cal and SSI, to the people at Hospice, to a couple of home-care agencies, to the other support team members and to the Community Hospice Volunteer Coordinator.
Through July and into early August, B had been consciously committed to reviewing her life, making amends and preparing for her death. She’d been deeply moved by the outpouring of love and caring from old friends from whom she’d been rather estranged. She’d been similarly touched by the caring involvement of her neighbor/landlady with whom she’d long had an on-again/off-again relationship. And, she’d been grateful for my willingness to re-engage with her. My willingness both to support her journey and to accept the responsibility to act as her power of attorney for healthcare decisions and financial affairs as she faced the final challenges of such profound illness and increasing dependency. Her crabbiness, impatience and rageful outbursts were always a part of the picture but apologies and amends usually followed in short order after an outburst
By mid-August things had shifted considerably. She became increasingly critical, negative, judgmental, demeaning, imperious, nasty and abrupt to all of us. Nothing anybody did to help was ever “right.” The more incapacitated and dependent she became the harsher and more critical she became of how any of us did anything we did for her. There were no more apologies. Her incredible meanness and her abusive ridicule left each of us feeling wounded and bruised. She trashed each of us directly and then to each other. She became increasingly suspicious and paranoid, particularly when we talked to each other at shift changes or in between visits to her. This, even as we were scrupulously honest in sharing with her the content of those support-the-support team conversations.
One of the five of us doing regular “shifts” of staying with and helping her actually did drop away because of B’s abusiveness. This oldest best friend of hers–who’d already been helping her single-handedly for over six weeks before B finally went to the doctor, got diagnosed and let the rest of us know what was happening– had had more than she could handle of the abuse. The rest of us soldiered on as best we could. Each, as best as we were able, letting B know just how upsetting it was to be treated the ways she was treating us. Her endless plaint was that none of us could know what it was like to be where she was. That this was true was certainly indisputable.
In the early days of my involvement in the process, I was much more spacious about her crappy behavior. I “understood” from inside of me just how unbearable and intolerable it might be to be becoming so increasingly dependent and helpless. Just how frustrating and demoralizing it might be to constantly be trying to explain to others how you felt you needed things to be done. Just how terrifying and overwhelming it might be to feel so totally out of control of your life. As the days went into weeks and then months, I found my “understanding” wearing quite thin. It no longer mattered whether her familiar behavior might be compounded by the pain, the medication or even some metastasis to the brain.
At some point of utter frustration and outrage, I finally lost it with the “explanation” that no one understood how hard it was to be where she was. I stopped feeling so sorry for her plight and was–at long last–focused more on my own. I, not particularly gently, reminded her that she similarly had no idea what it was like for us to come to be with her–openhearted and vulnerable in our caring–and to be bombarded by her nastiness. This confrontation came just a day after one of her other friends had let her know that dying was no license for such awful rudeness as she was dishing out. It all helped her to be a little more considerate for a little while,
In the wake of these “shape yourself up, girl!” conversations and in the face of the upcoming vacation time outs of all but two of the support team, there were many and repeated intense discussions about her moving to in-patient Hospice. No small matter since such a move involved her giving up the waterbed that seemed to her so essential to her comfort. It meant her giving up control over her access to her medications, over her freedom to smoke whenever she felt like it and to have her own food whenever she wanted it. She was also terrified that if it didn’t work out there, we might have already been dismantling her house, leaving her no option to return home. Everyone, including her Hospice case manager, got onboard to try to smooth the way for the least traumatic transition and to guarantee that she’d have her home to return to if need be.
A special variable-pressure air mattress was ordered. Her meds orders were written to provide maximum availability. I spent some time with the afternoon/evening staff at the facility the day before to give them a heads up about the smoking issues and the special foods/distilled water we wanted to bring in for her. I tried as well to enlist their sympathy, help and patience in what might be a very challenging and rough transition experience for someone so used to being so independent.
After a chaotic day in which (so typical for her life) everything that could go wrong did, she was eventually transferred to the local skilled nursing care facility that maintains several in-patient Hospice beds. She arrived at 4 P.M. When I called there to check on things at 9 P.M., she had the place in total uproar and was demanding to be transferred out against medical advice. She’d smoked in her bathroom and by the window in her room. She’d been nasty or abrupt with various staff members, been angry and belligerent about (and probably because of) the over-medication that was being pushed on her. By morning, when she was calming down and finally (with the support of one very tuned in aide) finding her way to settling in, the administration informed her they’d arranged for her transport home at 4 that afternoon. In the middle of an intense workday of my own, I tried–to no avail–to work some magic and arbitrate with the folks in charge to keep her there. They’d have no part of it. They essentially threw her out of in-patient Hospice care! She was utterly devastated.
It was all enormously traumatic for her, for them (they’d never before felt so totally unable to meet/cope with any Hospice patient’s needs) and for all of us on the team. She was quite paranoid about it all (partially from having been so overmedicated) and had great difficulty seeing her own behavior as any part of the problem.
After that awful experience, everything went downhill rapidly. She lost what little mobility she had had. She became completely bed-bound. Now on the air-mattress covered hospital bed that had been brought home with her. She had to be put on a catheter. True to form, she turned out to be one of the 10% for whom this is a horrendously difficult procedure. She became even more agitated, angry and abusive. Still, she refused to countenance any suggestion that she take the meds prescribed for the agitation and anxiety.
There were pitched battles about the need for bringing in paid or volunteer Hospice caregivers now that only two of us caregivers were available for the next 10 days. Such resistance! Not wanting “strangers or people who’d want to talk or to watch TV when she needed to rest.” Resistance to spending money even though there were indeed SSI funds available to help cover the cost of some hours of paid help. All discussions were endlessly circular and utterly crazy making. I was back, yet again, to physically being there for some significant part of every day as well as being endlessly on the phone for, to or about her. Totally caught up in feeling responsible for finding solutions to her circumstances in order to free myself! I was beside myself with frustration. Unable to see any way that I would be able to reclaim my life until she’d die.
In the middle of all this chaos, my oldest, dearest, deepest friend was visiting from New York. She’d had a house-exchange at the beach near here set up months in advance of all this insanity. I’d been withdrawn from all contact with any of my other close friends since the beginning of my immersion in this process. There seemed neither time nor energy for sharing this or any other story with anyone. And, in what for me is typical behavior in any crisis, I chose–as always–to fold inward, to rely only upon myself.
Carol’s being here, in the middle of my hardest days with all of this, was something so different. It was as though she were inside of the process with me on a daily basis. In fact, her presence weaving in and out of all of this made my emotional survival possible. It seemed an amazing gift from Spirit that she would “just happen” to be here–all through the preamble to, during the actual in-patient Hospice fiasco and, then through much of the crazy turmoil that followed. She’s had experience with a Hospice supported death. She’s had considerable experience in her psychotherapy practice with clients with personality dynamics much like my former partner’s. Perhaps even more significantly, she’s known me intimately before, during and after my repeating episodes of getting enmeshed with/getting individuated from B. And, maybe most important of all, I can almost always let in what she has to say about how she sees where/how I am. Her insights have historically always been to the point, been uncontaminated by “stuff” and provided me with eminently useful information.
Among the most amazing things about this excruciating journey these almost three months has been that I could really feel that I absolutely needed help. That I could actually ask for it. That I could get meaningful, useful help without having any “price” to pay for it. (No having to “take care” of the person I’d turned to for help.) And, that I could actually allow it in!
Carol coached me daily, giving me “scripts” that would define the other end of the continuum of possible responses to B’s outrageous behaviors. Carol held a mirror–a significantly less positively distorting one than my own–to B’s unacceptable behaviors. She helped me to see beyond my normalizing and excusing of these outrageous and offensive behaviors. She gave me reality checks whenever I felt that, by choosing to attend to my own needs, I was being mean, insensitive or cruel. She repeatedly reminded me that I was no longer in an intimate relationship with B. That, indeed, I hadn’t even been in much of a friend relationship to her over the past seven years. Carol reminded me that there was no longer any reason for me to feel that I had to be engaged in the intimacy of “processing” my feelings with B (something B imperiously and repeatedly challenged me to do). She repeatedly reminded me that it was neither my job nor even a realistic possibility to undo B’s lifetime script of being the abandoned one. Especially when, with B’s suspicious, hostile and angry behaviors towards all her caregivers, she seemed hell-bent to re-create that experience. Carol’s constant and consistently individuating feedback did much to help me to finally release myself from the emotional extorting enmeshment from which I seemed otherwise helpless to extricate myself. She was being the powerful voice of the sane, whole Robyn for me at a time when I was utterly incapable of connecting with that part of myself in me.
Needless to say, it was pretty scary contemplating Carol’s leaving for New York! Even as we planned to continue debriefing by phone on a daily basis. Then, the day before she was to leave, I actually took a giant step into reclaiming the voice of that whole, saner self. I found the words to stop B from launching into some of her repetitive “crap” about feeling “rushed” by me. I simply told her to knock it off, to “give it a rest!” Reminded her that I had only an hour for/with her that day before going off to spend time with Carol. Told her that she’d just have to deal with my timing if she needed for me to handle anything before I had to go. (I did still teeter a bit on the edge of feeling like a bully for being so short and firm and clear about my needs with someone so incapacitated and pitiful!)
Nonetheless, I drove down the mountain to meet Carol in Santa Barbara feeling expanded, set free, exhilaratingly home to myself in a way that had been lost to me in all this everyday immersion in B’s toxic-for-me energy field. At the beach, as I gathered my things to get ready to walk with Carol, I suddenly discovered that my wallet was missing! I panicked! The thought of having to handle all the work of replacing things in the midst of my already chaotic, overburdened life was devastating. I prayed to the Grandmother’s as, deeply shaken, I started to drive back to the store I’d stopped at. As I left the beach parking lot, a deep calm enveloped my praying self. I knew immediately that my wallet would be waiting there. And it was. Everything intact!
Carol and I had a somewhat delayed but delicious walk and dinner celebrating this magic in my life in the middle of the upheaval and misery of B’s life. Then, as I–alone–drove the mountain road home I realized that I’d totally spaced on getting gas in Santa Barbara. No services on the road. Getting into Ojai just past 10 P.M. when the local stations were already closed. Running on “empty” with a beeping icon for the last 10 or so miles. Coasting downhill the four miles to town the next morning to fill my 15 gallon tank with more than14 gallons of gas! So bizarre for me who never drives with less than a half tank. And, again, a magical near-miss experience to get my attention.
At a parting breakfast with Carol that same morning, I was fully awake to both of these events as magical but scary messages from Spirit. I was paying full attention to them as unequivocal reminders that I was endangering myself by being extended beyond what was safe for me. I knew that during that evening’s planned three-hour shift with B, I would begin extricating myself from the too-much-for-me physically present support I’d been giving.
With Carol and the healthy saner Robyn sitting on my psychic shoulder that evening, I shared with B the story of these two powerful messages from Spirit. Told her that I needed to take my own life back. Told her that in order to begin that process, I was going to be coming for only an hour and half at 8 P.M. each evening to get her set for the night. This even though there were to be just two of us support team members in town for the week. I passed her the information and options I’d gathered about both paid and volunteer caregivers who might be used to fill in the times she needed someone with her. I made it clear that there was no jiggle room for me anymore, that this was not up for discussion. She was not happy!
After a bit of silence, she was suddenly in terror about spending the night by herself, wanting me to stay over. I was able to be clear that that was absolutely out of the question. Still, she was clearly in a panic. So, there I was at 6:30 on a Friday night, calling around everywhere getting answering machines, no answers and no availability from even the Order of Catholic nuns who usually are available on short notice to do just this sort of thing.
I felt totally crazed and overwhelmed. At the edge of hysteria myself. I needed to breathe, to be away from her, to have room to scream and howl. I walked out of the house feeling as though I might just explode. I went to sit on a patio chair outside her house hoping to calm and center myself since screaming wasn’t an option in her neighborhood. As I sat, the chair slipped out from under me and I landed full force on my tail on the concrete patio! Such a shock! A jolt straight up my whole spine, Such a few moments of terror that I might have broken some one of my presumably osteoporotic bones! Such rage that I was still so endangering myself!
We were both quite shaken by my fall. When I could get up and go back inside, I came in ranting about how crazy it felt that I was so caught up with feeling it was somehow my job to figure out a solution to the problems in her life. That I couldn’t and wouldn’t do this anymore! That I wouldn’t ever again put myself in this kind of impossible place. That she’d have to accept responsibility for making some proactive decisions about caregivers instead of “living in the moment” and creating crises like this. Her fears about how I might have injured myself seemed to get her over her fear about staying alone for that night. And the plan was to go ahead and hire someone for nights as soon as that was doable.
By the next day she’d remembered some woman she once knew who did night sleepovers for ill or elderly folks for a minimal fee. I(!) called the woman and she was indeed willing and able to come on board that very evening. B took exception to the tentative schedule I’d arranged for volunteer and paid help during her days. (Regrettably, I’d still needed to do that in order to feel safe/okay about bowing out of all the responsibility I’d been taking.) When she balked about the set-up, I was surprisingly able to simply give it all up, to pass the torch back to her completely. (The Hospice Volunteer Coordinator was, it turned out, willing to take up some of that job as needed.)
Perhaps most astonishing of all–that morning after the further wake-up call of the hard fall–I told her I was needing to take myself totally off the schedule for caregiving once the others were back from their vacations. I committed myself to continuing to handle all her financial affairs and all telephone follow-ups with all the governmental bureaucracies. And, I promised that, after giving myself time out for a much needed longer than usual monthly silent retreat break (10 days), I would only turn up occasionally for ad lib drop-in visits.
I thought I’d actually been able to “slip the traces,” to free myself from the too much responsibility I seemed inevitably and endlessly to be taking in the situation. I hoped that her death might come while I was on retreat. I didn’t think I’d get off that easy, though. And, I didn’t.
On my fourth day on retreat, I picked up a call from one of the other friend caregivers thinking, from the tone of her voice, that it was a call to tell me that B had died. Instead it was a call that became the hook with which I, horrifyingly, reeled myself back into the craziness. I could hardly believe what I was doing!
I’d been up all the night before obsessing. Worrying about how to get B to finally sign and agree to let me deposit an as yet uncashed SSI check. It was currently stowed in a bank bag under her pillow. That check was needed to pay the sleeping-over woman the $850 already due her. Worrying that B would die without depositing the check. Worrying that the kindly woman would not get paid because we’d have to return the check to the government. Again, there I was, totally caught up in feeling responsible for what was absolutely not my not my life and not my business! I couldn’t believe how impossible it was being for me to let go! I was so upset for myself.
Helplessly in the grip of the obsessing, I went over to B’s the next day to lobby again for depositing the check and paying the woman. B very reluctantly, and only after much protracted circling around, finally agreed to my proposal. I realized, as we danced around her reluctance, that at the bottom of it she was fearful that once she’d paid her, the woman might stop coming to stay overnight! Realized that she’d been similarly suspicious after she’d given her old car to the friend that had been coming almost daily from Santa Barbara. “We’ll see how often M comes now that she’s finally got the car!” was her caustic cynical commentary at that time. So sad and so crazy, her reality!
So sad and so crazy my reality! I’d hoped that closure with what had seemed to me to be the very last loose thread would finally free me from the obsessing and actually allow me to move into rest. Much to my utter dismay, it didn’t. The next night I was again agitated, sleepless and ruminating. Obsessing all through that night about getting B to get some extra money by using some of the zillions of credit card courtesy checks she had had me keep stashing away for her. Obsessed this time with wanting to make sure there would be enough funds available for the full-time care that she might soon need. (She was, by then, a fragile, totally skeletal tissue of skin over bare bones, kept alive–it seemed–by the energy of her anger, bitterness and orneriness.) Thinking also that whatever might be left unused when she died could be dispersed as thank you gifts to her devoted caregivers. (Soooo crazy I was by then!!!)
I struggled and suffered with my having drawn myself back into the enmeshing craziness. Yet, I seemed totally unable to interrupt my own very devastating thoughts, obsessions and behaviors. Clearly I wasn’t yet done with whatever work I was doing! Back at her house again the next morning for a long and convoluted dialog with her about this crazy and nefarious scheme I’d planned. The dialog only succeed in making it totally clear how little appreciation she felt for what any of us had done for and with her all these weeks. Shamelessly, filled with bitter resentment, she minimized and devalued everything everyone (save one volunteer) had been doing. In the end, I tore up the checks and gave it all up.
I went off not to rest but rather on a mission to visit and report back about the six bed Santa Barbara Hospice. We’d found out that morning that they had a bed available and that B was one of those being considered for it. Since she would have to decide quickly if she were offered the bed, she needed someone to check it out for her. Of course, I agreed to be the one! It was a beautiful serene and loving place. I could not imagine B fitting in there at all!
On the drive home from Santa Barbara I came unglued. Sobbing my way up the mountain, feeling totally insane for having even cooked up such a crazy (and illegal!) scheme much less tried to make it happen. For having re-embroiled myself when I’d finally arranged to have some space to be really out of the fray for a while. I could barely breathe. Carol hung out with me on the phone and held the space for me to find my way through this extraordinarily primitive and excruciating place in which I found myself. We helped me reel myself back in. Helped me to remember to honor and forgive my beleaguered, bedraggled self that needed to go into the pit of it all once more time. To see clearly the truth about who B (and my biological mother before her) really was and to separate my own broken hearted self from her broken hearted self.
Still later that evening there was a call from the friend caregiver that had some previous professional experience with patient care. She was with B then and dealing with the fact that the pain killing meds had stopped working to manage her pain. B and she were unable to find any position that worked to give B even momentary respite from the unremitting pain. I could hear B in the background hysterical, overwrought and howling with the pain. P felt that it was definitely time to get B to a hospital and onto a morphine drip. It sounded right to me, too. When she told B it was time for the hospital, B didn’t put up any fight,
The whole transfer went easily. A call for the paramedics brought them there in less than two minutes. I went by to get her cats in for the night and then met them at the hospital with all the paperwork we might need. Our low-key small town ER was full of sweet, caring medical personnel and only two other not particularly serious walk-in patients. B got a shot of morphine immediately. Within 2 hours, she’d been X-rayed, admitted and transferred to an ICU bed in their tiny unit. The incredibly warm and responsive staff were getting her into bed, onto a morphine drip and getting some Ativan into her IV. P grabbed me and physically hauled me out of the unit lest we be caught up in the drama of settling her in. It was a blessing that she did that and a good call as well. It apparently took them three hours to get the drug level up high enough to get her under enough to set her free from her pain and agitation. (They told us the next day that after 15 minutes of dealing with her on the unit, they were totally awed and astonished at what we clearly had been going through to be keeping her at home.)
They kept increasing the drug load over the next three days to keep her under and free of pain. Four of us in various combinations spent those three days feeling compelled to dismantle her house. At the same time, we were equally drawn to brief visits with her no longer conscious self, each giving her messages that we hoped would ease her into transitioning.
As we worked at her house, we discovered that we were all feeling a similar urgency in the dismantling process. We each seemed to believe that, in doing this dismantling, we were actually helping B to let go of the material plane–the thing that she’d been having such difficulty doing.
We finished getting her things and animals adopted, donated, shared out or pitched by 5 P.M. that third evening. One of us had been with her from 3 to 3:30 that afternoon. I went by from 5 to 5:30. P went to be with her from 8 to 9. We each spoke to her about fear of leaving. We each encouraged her to surrender her body, to release herself from the suffering of this life and to open herself to the boundlessness ahead. The hospital called me to say she’d breathed her last at 9:30 P.M.
That was just barely two weeks ago. The week afterward was overfull for me. Two long workdays, more endless phone calls–this time to cancel and close out her phone, car insurance, resale license, bank account and credit card accounts. There was the collecting and mailing of keepsakes and artwork to her niece, grandnieces and a friend who’d sent a prayer stick for her final journey. More paperwork for the various bureaucracies and for the agency that received the donation of her body for science. Thank you notes to the people and agencies who’d hung in there and made all this possible to do at home for all but the last three days and then so gently in the hospital. Winnowing through all the now irrelevant paperwork from files I’d kept for the various governmental agencies.
Only in these past few days, at long last on a much-delayed silent retreat, have I felt finally free of all sense of responsibility around B’s life and death. In the space of this quiet I find myself amazed and overwhelmed by the depth and intensity with which I was drawn back into the crazy enmeshment with B. Astonished by how much brokenness and how little boundary there was still in me around this person who so matched the essence of my biological mother. Stunned by how much my individuation from B depended on maintaining physical and emotional distance from her. How easily I was swamped by the return to daily involvement with her energy and her chaotic life.
I see how easily I have always been susceptible to becoming prey to the angry, bitter, needy energy of both B and my mother before her. Hate-filled, self-hating desperately unhappy women. Women who needed to endlessly criticize and demean the help they received in order to make it appear that they were never really getting anything of value from me (or anyone else for that matter). How seduced I’ve always been by their hidden hunger and lack of love for themselves. How desperately I’ve tried to feed and heal that part of them, to figure out how to do it “right” enough for them, to get somewhere beyond their criticism.
It’s so hard to take in that–despite all these years of all the rich healing work I’ve done to take care of that hungry, un-self-loving part of me in me–I could still be so susceptible! That it could still be so hard to stay in me in the middle of her misery, her pain, her unhappy life. It was so shocking for me to see how fragile the boundary still was between my inner inconsolable one and her inner abandoned one.
I understand that–in these devastating months of being in the middle of her living into dying–I have been doing some profound inner work. I understand that I both re-opened the deep wound in me and also set free more of the toxins that were still locked within it. There has been some powerful releasing. By the time she died, I had become able to finally see–clearly and in the moment–just how different B was (on the personality level) from how I often chose to see her. I could really not like her at all. Could let go of excusing/explaining/understanding her lousy behavior and attitude as if they were “only” because of her terrible history, her terrible illness, her terrible pain, the medications, the possible brain metastasis. I could see her separate from the who that I am in my wounded place. Could honor the who I’ve become in the face of my own woundedness–no matter that it might well, on some “objective” scale be measured as less devastating than her woundedness. I could finally see the ways in which she used her woundedness to extort (albeit mostly ineffectively) caring from others.
I’m clearly still learning what gifts this sojourn in hell has brought to me. I am deeply grateful that it’s over. That she’s dead. That there is nothing left to do to complete my “job” of tying up the dangling threads of her life. I do not miss or grieve her in any part of my conscious self.
I’m still feeling quite ragged, exhausted, and not quite totally back in my own life. My body, five weeks after the shock of the fall off the chair, is still not yet “right.” Walking any distance still brings varying degrees of pain and/or discomfort despite a considerable amount of bodywork, acupuncture and homeopathics and restful coddling. The pain and discomfort wanders back and forth from side to side, and up and down from my waist to my hip joints. It seems that it gets released in one place only to tighten up in some other. Almost disappears only to flare up anew. This brings me to tears of desperation for some moments almost every day. In some way it feels as though I’m still carrying the burden that needs setting down. I am hoping that this telling of the story–as much of it as I know at this moment–will help my body to let go of its suffering.
Originally published October 2004
