Stage 4: Using the Gift of Time
The experience of grief rarely comes to a neat and tidy end, but, under the right circumstances, there’s the opportunity to address, and perhaps resolve, family issues that may have been avoided for a long time. Unlike sudden death, which presents shocking, instantaneous loss, the new grief can give us the gift of time—if we’re prepared to use it.
Such preparation is no easy task. If the loved one’s health continues to deteriorate and the prognosis is poor, everyone gets ground down. In my own family, as my grandmother’s downward slide continued, the strain on my mother and aunt became more apparent. I could see it in my mother’s face when I’d walk into Grandma’s room and find her sitting there, looking gravely at my grandmother as she slept. Her face was drawn, and there seemed to be more lines around her cheeks and forehead. Grandma, I noted, looked uncomfortable—in pain, even when she was asleep.
When she was awake, my grandmother didn’t always recognize my mother or aunt. Then she began to complain of chronic pain in her legs. None of us had any idea what to do about all this. Nor, I discovered, was there anywhere to turn.
By then, I’d become aware of the limitations on care to the elderly provided by “entitlements” such as Medicaid, which paid for my grandmother’s stay in the nursing home. Under the limitations of her coverage, onsite doctor visits were virtually nonexistent. When Grandma needed to see her doctor, we had to figure out a way to take her to the doctor’s office. This is no small task when a patient is cognitively feeble, fairly heavy, and frequently uncooperative. She fell on three occasions, and because no treatment was available at the nursing home, she had to be transported by ambulance to a nearby hospital each time.
The nursing home was unable to provide even simple relief measures. When Grandma developed leg pain, we made another trek to the doctor’s office, where we learned that massage was the only thing that might help. None of the nursing home staff had time for that, so regular leg massages became yet another responsibility taken on by my mother and aunt.
If there was any kind of “resolution” in my family as a result of my grandmother’s protracted deterioration and death, it was that, over time, my mother and aunt became more empowered. The timidity and deference that had once characterized their relationship with my grandmother was gradually replaced by quiet assertiveness. For example, they insisted that the staff take Grandma to the day room for a couple of hours every day for a change of scene, even if she said she wanted to stay in bed. A minor victory, perhaps, but an important change for my mother and aunt, who’d spent a lifetime bowing to their mother’s demands. The good news, then, is that sometimes terminal illness can be a crucible that allows individuals to move forward in their relationships and enlarge their own sense of self.
A New Conversation
Since what might be called “extreme medicine” now often determines how our mortality unfolds, most of us, perhaps the vast majority, can expect to experience a slow, medicalized dying—our own, that of family members, or both. The new grief has become the new reality to a degree unimaginable just a few decades ago. What used to be, for the most part, a fairly straightforward and often quite sudden event is now more likely to be a wrenching, lengthy, often emotionally, physically, and financially ruinous ordeal, which can whipsaw us back and forth between fear and hope, euphoria and despair, resentment and guilt, belief and doubt, with numbing exhaustion usually a constant. For the first time in human history, we’re participating in the unprecedented social transformation of the way we die, much of which seems to take place in a no-man’s-land between life and death.
In spite of what’s clearly a massive social shift in the way we now enter and exit the domain of death, we still really don’t know how to talk about it. We haven’t yet begun to have the difficult, honest conversations—person to person, family member to family member, doctor to patient, therapist to client—that would help us better understand what to expect of this harsh landscape, and how to pick our way through it. It’s true that there’s been some attempt to get genuine dialogue going between medical providers, patients, and their families about end-of-life planning. In fact, the Affordable Health Care Act had included provisions enabling patients with or without terminal diagnoses to meet with their physicians once a year and review their overall treatment program, consider options, and make rational decisions. I say had included because politicians who opposed this healthcare legislation immediately referred to these provisions as “death panels.” What this hypersensitivity to any discussion of end-of-life issues suggests isn’t just an irrational fear of “Big Government,” but a far more widespread, insidious feeling of fear and dread, even denial, of what’s now, directly or indirectly, a reality for all of us.
But just as important as conversations between patients, their families, and doctors about practical and medical end-of-life issues is the general conversation we all need to have about what the emotional experience of slow dying is really like, for both the ones doing it and those who must stand vigil. As is obvious in several of the examples above, isolation—often self-imposed—and feelings of guilt and shame about one’s own reactions to the long dying of a relative prevent genuinely compassionate and helpful conversations from taking place. We need to help people, particularly caregivers and family members, break out of their isolation and talk in an open, candid way about the untoward—not to mention unwanted and deeply ambivalent—feelings that inevitably arise during the grueling slog through a loved one’s terminal illness. These feelings include, but aren’t limited to, grief and fear; unwelcome anger at the person dying; resentment of other family members that so much of the burden of care falls on us; guilt about our own unfulfilled family duties; self-horrifying wishes that the long-dying person would just complete the job; and moments of sudden, perverse, not-fit-for-prime-time hilarity, which can erupt, sometimes as easily as tears, often signifying an emotional release from otherwise unbearable tension.
Everybody dies, and every culture develops an implicit manual defining socially and morally appropriate feelings and behaviors for the occasion. But those old manuals, based on models of dying and death that are increasingly out of date, often aren’t much help, and we’re only just beginning to develop newer, better manuals, more in line with this new world order of death. We’re just beginning to find the vocabulary and the courage to give speech to this process.
As therapists, we’re uniquely well placed to engage people in this emerging conversation and bring this topic into the light of shared experience. Although we can’t protect our clients from the new, protracted process of grief (nor would we want to), we can help them seize opportunities to finish unfinished business. We can help people approach the end of life with dignity and a sense of control. For clients who walk the long, twisting road toward loss, we can offer informed compassion, comprised of unconditional acceptance of the messiness of grief, some understanding of its newly crooked course, and a gentle way forward.
Joseph Nowinski, Ph.D., is a clinical psychologist and coauthor of Saying Goodbye: How Families Can Find Renewal through Loss. He’s a regular blogger for The Huffington Post.
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