Three of Swords from Tarot of Mystical Moments by Catrin Welz-Stein, Reversed.
Hospice for Haters
Hospice for the Hopeless
Hospice for Healers?
The last syringe of morphine I administered to my mother on her deathbed was met with a clamped jaw, pursed, unyielding lips, and tears rolling down her cheeks. I will probably never live down the shame and sorrow of forcing that syringe between her lips and pressing the plunger. It felt distinctly cruel, yet I was very clear on the ramifications if I did not—the pain she felt from the pressure ulcers, the terminal agitation that would overtake her, and keep her from sleep. Her ragged breathing. Thank Christ she died only a handful of hours later, so I did not have to keep pressing the issue—or those plungers.
I hated every minute of those last days, but I was still able to show up and care for her. If I lingered outside her bedroom door overlong, it was because I was exhausted beyond all measure, and I was dreading yet another morning, noon, or night of the grueling labor that was tending a body as it wastes away. And I was so angry, it took my breath away. I was also overwhelmed by moments of frustration and disgust, and often had to hold back, shake, and shudder, and then force myself to continue.
I was furious that I felt nothing but pity for her. There was no apparent affection or genuine compassion. I thought over and over of a dear cousin, and watching her lovingly care for my aunt in her first days in hospice—brushing her hair, lotioning her dry hands, rubbing her back—and I was swamped with envy because I couldn’t care for my mother the way she cared for hers.
For most of that four-month hospice journey, I fretted that my heart was a broken and aberrant thing. Only a person damaged beyond hope and repair could care for their mother in such a cold and perfunctory manner. A whole, healthy person would render aid with sincere warmth, love even. But I was not whole or healthy, and I knew it. Even so, the guilt surfaced again and again, gnawing at me as I cared for her. Why couldn’t I live up to my values and care for this dying human with tenderness and compassion? Could I heal this before she died?
Eventually, I released these larger questions, some of the guilt, and the unhelpful notion that I alone was the broken thing. Instead, I found relief in the assurance that you can’t force compassion or tenderness towards someone who neglected you. Or at least, I could not. Ultimately, the anger and disgust I struggled with were safer things to feel than risking a hopeful connection or love. That felt reasonable to me, and far more accessible than forgiveness. Before her death, all I was able to manage was the simple acceptance that I could not heal what was broken.
And I’ll tell you, the disgust was the hardest part. I harbored so much shame over it. Someday, I will write about how I could not touch my mother with my bare hands and instead needed surgical gloves for mundane tasks like dressing her or brushing her hair. Someday, I’ll grapple with the fact that to touch the bare skin of her arm or leg felt more terrible to me than the oddly (miraculously) impersonal act of wiping her ass. I absolutely hated how pathological it all was. Someday, I’ll write about that.
What I will say now is this: the attachment we experience with our primary caregivers sets the baseline for how we handle our future relations. I sometimes think of attachment injury and our resulting attachment style as creating our emotional operating system. Hell, maybe even our physical one—in how our nervous systems show up in relationships.
If early attachment dictates how we manage intimacy with others, especially with our primary caregivers, then my operating system was coded with directives of rejection, disgust, disconnection, and fear.
The beautiful, tender care that my cousin offered her mother was not accessible to me because my fucking OS did not allow for that, and continuing with this ridiculous metaphor, a software patch could not be conjured out of nowhere simply because I wanted it or because my mother needed it. Forthcoming updates are still pending, I guess.
In the bitter end, when my mother finally passed, what I felt most was relief. Relief for the end of her suffering—absolutely, 100%—but also a shuddering, exhausted relief that I no longer had to face the dark, hard part of myself that cared for her.
Her death also left the kid and me alone with my father. To say I never imagined my mom dying before my dad is the understatement of the century. For most of my time here, the idea had seemed too absurd to consider. Her physical health was so much better than his, and the list of his chronic conditions was extensive. Turns out, though, a slowly dying brain will drag a body along with it. Thanks, Mom.
It was also beyond what I could have imagined, because the eventuality scared me in ways I couldn’t even articulate to myself. I couldn’t plan for it because I couldn’t imagine surviving it. Have you ever been asked to make an emergency plan for a natural disaster—and your plan was basically “die like everyone else”?
It was like that. That was me.
I remember accompanying my father to his sister’s funeral, listening to my cousins eulogize the strength of their relationship with their mother—my aunt—and how she had shaped them into the men and fathers they became. I cried that day not for mourning my aunt, but because I knew I could never say the same about the man sitting beside me. The thought of saying anything about him other than the rugged truth was, and still is, impossible. Thank heavens there was no memorial for him. You know, if you can’t say anything nice…
My eldest sister once noted that after we each moved away from our parents’ home, we returned as guests. My father was always polite and affable with guests. I hadn’t made that connection when I chose to move home to care for my mom. Instead, I told myself a story about a man who had relaxed, who had grown kinder with retirement and old age. I was so wrong. That became abundantly clear quickly. After only three months, my daughter and I had ceased being guests. From then until his death, my father—not my demented mother—was the most challenging part of my time here.
From that three-month mark on, he showed his anger and displeasure without hesitation. He expressed every unkind thought and leveled rigid demands. He routinely made three generations of women cry at the dinner table—at the same time. Soon enough, I was literally and figuratively tiptoeing about the house as not to attract his attention, judgment, and scorn. If I could hide from him by taking the back stairs or by exiting the front door instead of the back, I would. I made sure to keep both the kid and me as small, quiet, and demure as possible.
And in the goddamn interminable hours, days, weeks, and months he sat in the kitchen watching all the obscene and objectionable TV he could find, I was obliged to cook for and feed him, myself, my mother, and my kiddo. The kitchen became my least favorite space in the house—the place I felt most exposed and unsafe. I especially dreaded mealtimes. Each breakfast, lunch, and dinner was a tense and rigid exercise in apprehension and appeasement.
I recall reading Thich Nhat Hanh’s Peace Is Every Step in those early days. In one passage, he reflects on eating mindfully and in community. He writes simply, “If the people in a household cannot smile at each other, the situation is very dangerous.” Nhat Hanh doesn’t elaborate—but he doesn’t need to. I knew exactly what he meant, and those words became one of the first touchstones for me to see just how desperate a situation I had found myself in.
By month six, I was experiencing random, widespread pain throughout my body. Within a year of moving home, I was diagnosed with fibromyalgia. Eventually, my hypervigilance became so complete that even now, I can’t remember what life felt like before it.
Early on, my father made it clear that the only visitors he would tolerate were my siblings. He strongly discouraged me from having guests outside the immediate family and found it objectionable when I did. The first time I brought a romantic partner home, he made it unmistakably clear, in his repressive and seething way, that it was absolutely not okay. I never brought a man home again.
Oh, but THEN the pandemic was in full swing. In a clear silver lining of social distancing, I boldly invited folks over for outdoor gatherings during those earlier years—because 1) my father could not complain about people in the yard, and 2) I did not have to explain to my guests why I was too anxious to have them in the house.
By the time lockdown and the extended pandemic were over, my mother was years further gone in her dementia, and my father’s tolerance for guests had vanished entirely. I rarely, if ever, invited people over, and the few that I did were for my kiddo’s sake. In those moments, I was so frantically worried my father was going to be angry with me or the kids that I would panic and become highly dysregulated. In one terrible instance—the kid’s first-ever sleepover—I had one of the most intense emotional flashbacks of my life, reliving how unsafe I had felt in my own childhood. It was mortifying. And devastating.
By the time my father’s worsening mobility forced him to retreat to the second floor and the guest bedroom, the damage was complete. I was so fearful of him that I could provide no more than the bare minimum of care. I often joked I wasn’t his caregiver, but his chambermaid. Even in this limited role, I was hyper-reactive. If I saw him coming out of his room or the bathroom, I would startle and slink back into my bedroom, down the stairs, or into any shadow I could find.
Whenever we needed to make big decisions about the house or money, I had to have my brother present just to face him. Internalizing his disparaging questions and judgment every time I needed to call a plumber or an electrician was torture. When tradespeople did come, I practically begged them to be quiet and not disturb him. I worried constantly that he would find their presence objectionable and turn that negativity on me. And god forbid he be annoyed or dissatisfied with their workmanship—that would reflect back on me, proof of my “poor judgment” in insisting we hire them in the first place. Every meal I cooked, every decision I made, even the way my daughter and I occupied space in the house, was subject to his displeasure.
If all of this is sounding like life in an abusive relationship, know that it was precisely that. At some point, my adult mind understood that I was in charge of everything—of the finances, of the household, of him, but my nervous system and all of my inner children knew the truth. He would always be in charge, and I would always be… small, scared, insignificant, worthless, and frightened to such a degree that my body had filled to the brim with pain.
Over the years, I would experience strange spells of disorientation, where the usual humdrum of daily life would trick me into wondering if things were really as bad as they seemed. Surely, he could not be as terrible as I claimed in therapy or reported to friends. It was as if I was gaslighting myself out of some perverse hope that things might not be as they were. But then all I would need to do is drop into the tension, bracing, and pain in my body and remember the truth. Know the truth.
I had my moments. I stood up to him for my daughter. I refused to let him treat her the way he treated me. I yelled and spat tacks. Eventually, I refused to let them spend any time together, and for the last two years of his life, he did not lay eyes on his granddaughter—despite living in the same house. I could not have borne it.
I even placed myself between him and my mother when she was afraid and fawning. The courage it took to protect her still defies my belief, and when I look back, it feels less like a memory and more like watching a movie of someone else’s life. I imagine it required a superhuman amount of dissociation to stand up to him on her behalf. Yeah, it did.
I wish I could say that these acts of rebellion and protection made me stronger, that they healed something in me as they were happening. But instead, with each moment of defiance, I felt the younger versions of me grow more terrified and vigilant. I was not healing my trauma in real time. I was reinforcing it.
I worked so hard in therapy to arrest the damage, even to release it. I made progress in every intellectual way and in a handful of emotional ones, but overall, each attempt to reprocess or release something from my body was met with failure. I could not reach it while I was still living with him and in fear of him. Of course, I couldn’t.
I think back to the early years of caring for both my parents, when my primary focus was my mother as she was eaten up by dementia. My memories are appropriately vague and hazy. We tend to muffle memories of such difficult times.
I do remember how agreeable and accommodating she was. She said please and thank you until the day she became entirely non-verbal. She never became suspicious or resisted any of the care that I or the agency caregivers offered her. Taking care of her, despite my emotional pain, was easier than it had any business being. Because of this—because she was my mother and, in a heartbreaking way, because I did not respect her authority as my parent—when hospice was engaged, it was easy to step into the role of leader of the effort. I believe that most caregiving, but especially hospice, requires that. It becomes your job to insist on a certain standard of care, even if your loved one is not all that happy about it.
During the first few hours of hospice care for my father, I faced something very different from what I had grappled with while caring for Mom. Something unworkable. The ambivalence and resistance I felt for caring for the parent who neglected me did nothing to prepare me for what I would contend with while caring for the parent who abused me. Very abruptly, I realized I could not inhabit that same authority. How can you take control of the situation and insist on an agenda of care when you are afraid of the person you are caring for?
The nurses had given me clear direction, but for the first 36 hours of hospice, I was frozen. Literally petrified. I could not change the soaked sheets beneath him. I couldn’t spoon-feed him or administer medicine. If being his chambermaid meant facing him three times a day for meals, being his hospice caregiver meant interacting with him every three or four hours. It was unbearable.
Though I’m chagrined to admit that during those first few days I couldn’t give him the care he required, I don’t hold anger toward myself for it. On some very intellectual level, I understood that this was his doing. The bed he made. I hadn’t chosen to be afraid of him. I hadn’t chosen to neglect his medical needs—not in any way I could control. I felt trapped and miserable.
By the end of the second day, I knew I had to enter his room and insist on certain things. Sometimes he agreed; sometimes he refused. He told me “no”, to leave him alone, and even to “get lost”. In these moments, I bolted out his door and as far away from his room as the floor plan of this house would allow. It took me hours to work up the confidence to approach him and his care again. He was on his deathbed, and I was still trying to hide from him.
As he declined and I gained practice asserting myself, I found fleeting moments of control and confidence. I’ll confess: what drove me was not concern for him or any caregiver’s values, but guilt and anxiety that the nurses or my family might call me out. It would have been darkly hilarious—and deeply lamentable—if accusations of elder or medical neglect had marred the last few weeks of my caregiving career. Imagine my eternal ignominy.
The days passed. He continued to decline, and eventually, he became more compliant. He stopped saying no to personal care. He started saying yes to meds. I am relieved to say that when he began to suffer, I was able to push past a massive amount of my own resistance and reliably offer him the meds to mitigate his pain.
It still took a tidal wave of will to walk into his room with syringes of various medicines, but I managed. About three and a half days before he died, he stopped waking up. At that point, my nervous system tentatively settled around the knowledge that it was safe to cross the threshold of his bedroom, though I, once again, felt a tremendous tension with each push of those plungers. I was convinced that each dose might rouse him and that his eyes might fly open, and he would cast all displeasure and anger on me, and I would once again feel like a frightened child under its hobbling intensity. He never did.
It strikes me as so deeply sad that my chief concern during his last days on earth was that he might simply wake up and continue to live.
I never felt compelled to reconcile or heal the fracture between us, as I had with my mother, but I did find a place where I could at least offer him the bare minimum of care. In the final days of his short hospice journey, I felt moments of strange elation when I looked at this diminished, dying man and thought I felt bursts of compassion. I marveled that my heart might finally be opening to that long-sought value, in the eleventh hour of my final parent’s life. But as I sat with it, I deflated. The closer I examined this unfamiliar feeling, the more I realized it wasn’t compassion at all, but once again, pity.
Beyond the care I was struggling to provide, I was overwhelmed by dread about what life would look like once he was gone. I would suddenly be out of a job. I would have to make my own way—no housemates, no partner, just a kid relying on me.
It wasn’t only the concern about what would become of my life after caregiving. It was just all fear all the time. I have always been afraid—of everything. Of change. Of challenge. Of failure. Of intimacy. Of facing the deep well of pain in me. For decades, I tried to divorce myself from my perceived victimhood, but so much of this damage feels like it is me. It’s hard to imagine who or what I would be without it. Complex PTSD will fuck you over like that. You start to believe you are your trauma, or at least the ways you were forced to cope with it. When your identity is so tangled up in your pain, even wishing for change—let alone taking steps to heal—feels almost impossible.
Who taught us that the terror of the unknown is more daunting than the fear of the familiar abuse? Nature, I guess. Our nervous systems are designed to regulate towards the safety of what we know and who cares for us, no matter how they do it.
When the funeral home came to retrieve my father’s body and my mother’s ashes, it was a gorgeous late-summer morning. I sat on the front step in dappled sunlight and wept. Not, of course, from grief at their passing, but with profound, bone-deep relief.
My second journey surviving hospice was over. My seven-year role as caregiver was over. But more than both of those things, the two people who raised me—who created all this sadness, fear, and pain—were gone from this house and the earth.
In the days that followed, I experienced the now-familiar but still unsettling, shifts in my perception and reflexes. My body has impulses that were created in all this care. I feel it in how I move from room to room, but also in how I react to new stimuli and opportunities. All the planning and organization caregiving demanded remains lodged in my muscle memory. All the tension and alarm over my father is still in my nervous system and probably will be for some time. I still wince when the back door slams. I brace when the microwave beeps. Will he hear it? Will he demand to know what I am up to? I could tiptoe and go hide some more. Sigh.
On the productive upside, I’ve been pouring the leftover nervous energy of vanished care into decorating the house. And into my first college-level class in over 30 years. And into a sexy and exciting crush. Oh, and hey—good news everybody, I can invite lovers over now.
When I pause to consider for myself—or when someone asks, with genuine care and curiosity, how I am—I find a strange, warm, and wholly genuine smile spreading across my face. I am fine. I am so okay. I am happy. I did not expect that to come so quickly, and I am trying not to think that means anything in particular about me, except that I have been released from years of toil and from living in survival mode.
There have been many times in my life when I mourned the person I was meant to be. The person who might have known the privilege of secure attachment, a regulated nervous system, and a sense of herself being loved in this world had she only been raised by different people. Someone who might have gone to college, built a career, formed lasting romantic relationships, and achieved a level of success beyond merely surviving and getting gold stars at therapy. That version of me will never see the light of day. But a different version gets a chance now to step out of her own shadow and, I don’t know, maybe even thrive.
My future remains uncertain, as all futures do. Will I finish school? Can I even afford it? What new hardship and heartache will find their way to me? What does my life look like when I no longer need to override my own intuition to protect myself from those who were meant to keep me safe? What will intimacy look like when there is no one left on this earth that I am afraid of? Big questions, folks.
In the past, these unknowns would have floored me. A vertiginous overwhelm would have set in, and I would be swallowed up by sleepless nights and gut-wrenching trepidation. That was the past. Today, I feel optimistic, capable, and ready to figure out who I get to be.
The morning of my parents’ burial, I woke reflecting on my life here and how I tried to manage my trauma while I was caring for the two people who had neglected and abused me…
I often talked about being a cycle breaker, as if I really knew what that would look like or feel like. But lying in bed that morning, I finally understood. The generational trauma that I tried to stop with my heart, with my mind, with my body was going into the ground. I had done it. I broke the fucking cycle. I know I am not the perfect parent, and I expect my kid to have struggles and even trauma, just like everyone else. But this world no longer needs to endure the pain that was passed through generations of both my family lines—it ended with me. And as my siblings and I sat at their graveside, I felt, for the first time in my life, something that can only be described as closure.
And it still feels wonderful.
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