Guilt. Stress. Exhaustion. Anger. Sadness.

We read these cries for help – these pleas for release – in blogs for caregivers whose spouses have incurable illnesses. We hear these cries loud and clear in our face-to-face support groups as we commiserate, sooth and support one another about the challenges and uncertainties that we face each day.

Sharing like this helps.

Until it doesn’t. It helps until we are called to those daily inescapable challenges. Then, unconsciously almost, we then harden against loss and rise to the painstaking demands and struggles of controlling schedules, controlling care, costs, meds; negotiating ever changing boundaries; protecting if we can against social indignities; and assimilating the inevitable but never predictable declines.

So went the course of my life for 10 years – compounding each year. I cared for, abided with, and loved my husband. His rare Parkinsonism illness racked him with pain, diminished his mind and body, and took away his voice.

Early in the course of my husband’s illness I was told by a compassionate friend that I was going through ambiguous loss. That term was good. It resonated – on many levels. Yes, both my husband and I were undergoing irretrievable losses and associated emotions – losses to our individual selves, our couple-selves, and our intimate relationship. And yet, here we were – alive and present to each other. We grieved yet interacted every day. It was helpful to put a name to this living contradiction. Why? Because my husband’s incurable brain disease ushered in unpredictable disruptions that I needed to harness with a name. I needed some sort of short-hand to describe to myself the powerful dynamics that were chipping away at the unity of my relationship with my husband. We were not in synch in expectations from modern medicine, in responding to the uncertainties of uncharted declines, or in forming a mental picture of next steps. Nor were we in step in understanding one another’s true needs or capabilities for meeting them, each of us focused on our own experiences of losing and grieving.

With these things out of sync, it is no surprise that my stress, anger, sadness and the like were thrown into sharp relief. Naming this situation as ambiguous loss helped to give it an order of sorts. If it had a name it was “a thing.” and others had gone through, it too. Retrospectively, I have to say, however, that it is a name for caregivers, not for the couple. I have never heard anyone tell the spouse who has the incurable degenerative illness that he or she was going through ambiguous loss. The singularity of this term – useful for only half of the couple – is part of why eventually this term lost its luster for me.

The resonance of ambiguous loss began to fade for me as the years passed. It was six years, seven, eight since my husband’s diagnosis. At eight and a half years, ambiguous loss no longer described my reality or my husband and my relational reality. At eight and a half years into the illness, my husband and I had journeyed through so much – through labyrinths, through darkness and light, through horrors and calm and through hard and painful decisions. At this point, our experiences seemed to be mired in more and more low points. We were losing each other, the beauty in our bond, in addition the individual losses we each suffered because of the illness. In the face of this threat, grounded in so many small deaths beyond our control, we tacitly shifted, as if all that was left to us was the choice of nurturing the love we shared. Paradoxically, we fell in love in a new way, more deeply and soulfully than ever before – a love that could outlast death.

Though it took much time, tension, star-crossed efforts, and rock-bottom crises to get there, my husband and I finally become in sync. We bonded in accepting what our situation was; what we still held onto and how; and what we knew we had let go of.
At this point, I needed a better word to name our situation and experiences. Ambiguous loss suggested getting through ambiguity until there would be a final loss – my husband’s death and closure. Instead of this wait for a final resolution, I came up with paradox. Paradox is not a name to harness a contradictory situation until it resolves into finality. Rather it involves holding, embracing dynamic tensions and working with them – working hard –to gain meaning and peace. Embracing paradox is a way of being-in-the-world, not a way-station to resolution.

We caregivers viscerally know so many of these existential paradoxes even if we don’t, in the moment, call them such. For example, we live and know such paradoxes as being at once separate and together, meeting our own needs and our mate’s, knowing and not knowing the future, honoring continuity while giving ourselves over to change, letting go to hold on, and finding presence in absence.

By eight and a half years into this decade long journey, my husband and I were connected in feeling such paradoxes together. By enacting our hard-won bond that now seemed more natural than breathing itself we came to something greater in our relationship than we had ever experienced before. We embraced paradox as we embraced each other, riddled with contradictory dynamics. We found meaning in randomness. Grief and sadness never ceased. But we brought beauty back into our relationship and into our times together, even as our world grew smaller and smaller.

A big part of our deepened bond was that my purpose turned to holding his identity close. As long as I did, he was himself, his core self – and there was no ambiguity about that. Functionally, he grew progressively depleted, and verbally he struggled to get out words, let alone full sentences. But he was highly expressive to me in nonverbal ways and aware. His eyes never went vacant. He was not, in the common parlance of caregiving, a “shell of his old self,” dismissed to death-in-life. It was his being that was important – not what he could or could not “do.” In turn, I was my core self in relation to him. Once in sync, I did not see myself as “a caregiver and not a wife.”

Ambiguous loss alone never would have gotten us there. Ambiguous loss implies getting through an uncertain “suspension in contradictions” to reach, at last, the end – a final unambiguous loss for the survivor. Had I reified this term in my framing of caregiving, I would not have realized that my husband’s and my times together could have more to them than “getting through” each day until the end. Once in sync, our day’s meaning was our togetherness.

Ambiguous loss, I realize today, is not a way-station. It is the gateway to paradox. This is not to say that the gateway is beckoning and well-arched. It has many gauntlets, descents, and even breaking points, but the passage opens opportunities for transformation.
To be clear, transversing from the term “ambiguous loss” to “paradox” is not merely haggling over words. Rather given the fragility and tenuous hold on certainty that we caregivers have day to day, we can easily fall prey to how the outside world characterizes our experiences. This characterization can strongly impact how we live our lot-in-life unless we recognize the significance of particular linguistic framings. Words matter. Language influences our experiences – and even what we allow ourselves to imagine our experiences can be. The names we use shape the reality we grasp and the understanding we make of it.

What if, for instance, paradox was as common to our language of social support and caregiving as ambiguous loss was – both in our own heads and relationships and in professionals’ counsel and treatment? If it was this common, more people might find that the mystery of growing closer while letting go falls within their reach. More conversations might acknowledge the cyclical passage that a couple takes together in this devastating illness, and they might speak of the harrowing of hell that many of us go through not as “bad conduct” but rather as part of a quest to find a boon in this darkness – perhaps a necessary part. Additionally, more people might frame experiences as the mysterious paradoxes that lie at the core of all genuine caring – such letting go and holding on. These existential paradoxes would not be experiences to escape or to “get through” to a final resolution. They would be opportunities for renewed spirit. They would be opportunities for us to shift our usual framings and behaviors into something a little different, perhaps as small yet as powerful as entering into the sense of time that our ill spouse inhabits, interacting there together, and in the midst of it without notice encountering grace.

Barbara

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