Dear Dr. Neimeyer,
Your recent reply to the woman widowed over 25 years ago resonated with me, even though my husband is still alive. I am a member of the Well Spouse Association, a national nonprofit organization which provides peer support to those caring for chronically ill or disabled spouses.
“Chronic sorrow”…”bleaching out of emotions”…”surviving but not thriving”… “sense of not fitting in”…”secondary losses”…”loss of basic world view”…all spoke to me as a spousal caregiver for over 40 years to a man paralyzed from the shoulders down.
There are no rituals equivalent to a funeral or memorial service for people in my situation. Our spouses are still alive, but in greatly compromised conditions which restrict the fulfillment of many dreams once held. I’ve heard the term “ambiguous loss”, coined by Pauline Boss, and many long term spousal caregivers to those with progressive illnesses find that applicable to their lives.
Would you kindly address this issue of chronic sorrow, or ongoing grief, among those whose loved ones are still alive?
Your recognition of my descriptions of chronic sorrow in your own experience is a profound validation of the importance of this neglected topic. Even when caregiving is provided to a spouse, parent, sibling or child with great love across the years, there is no denying the many losses, visible and invisible, that accumulate for the caregiver, and perhaps for the whole family. Further compounding the unspoken grief that arises in such circumstance is the guilt that often accompanies it, when caregivers seek some form of freedom from the heavy responsibility that life and fate have thrust upon them, even for a few “stolen” hours. Sometimes regarded as “saints” by others in their network, they often don’t feel saintly, experiencing cycles of resentment and frustration on the one hand, and self-criticism and recommitment to the task on the other. And depending on the nature of the disability, they may lack even the basic satisfaction that comes with knowing the appreciation of their loved one, when cognitive decline, communication disorders, or profound developmental disabilities or the rigors of illness make the yearned for dialogue impossible. Worse still, a medical system that adequately treats infectious diseases is often far less equipped to provide adequate care for chronic disability, providing only brief and occasional assistance with basic needs.
Clearly, there are no easy answers to these conundrums. Life can be grossly unjust, and injury and illness can strike at random. We have far less control over events than we commonly imagine. Suffering is inevitable in all lives, but it is not evenly distributed. And dreams can be shattered in a moment, or degraded across a lifetime. None of these inconvenient truths bring comfort in the wake of what can be a living loss, one that seemingly knows no end.
So, what can one do? I offer here a few humble ideas, recognizing at the outset that none is a panacea.
1. Count your losses. Start with a question: What have I lost? Take out a sheet of paper, and write down a short answer: my career, my free time; travel, my friends–whatever comes to mind. Then write another answer: my freedom, spontaneity, possibility, hope. Then another. And another. Don’t stop until you have listed at least 10 things, which can be concrete (e.g., the husband I knew, my own space) or abstract (e.g., my patience, my future). Notice the feelings that arise as you make this list, and give them space.
2. Ritualize these losses. Consider some creative way of acknowledging these losses, perhaps in ritual form. Perhaps you could write each on a slip of paper, and place them in a special box that “contains” them. You might then take one out each week, and journal about it for 30 minutes. Or perhaps you build a ritual fire, and as you place each of them in the flames, you repeat as a mantra: I release you. Perhaps you construct a ritual of renewal: Your list refers to the loss of your energy or vitality, so you plan a revitalizing day at the spa. You feel you have lost your friends: Reach out to three of them for a simple get together. In other words, rather than bearing the losses silently, bear them consciously, and listen to them closely for signs of what you might need, and with some ingenuity, might get more of.
3. Open to change. Take another step, rather like the first, asking, “What would I like to change?” Stay with it until you have at least 10 short answers. Notice the feelings that arise as you make this list, and give them space. How do they compare with the emotions that arose with the first list? Which speak to your deepest yearnings? Then earnestly ask yourself, how can I make this so? Rarely will the answers be simple, or complete. But lived into with creativity, with the collaboration of others who care for you, and with self-compassion, you may find that you can identify and surmount some of the inner and outer obstacles that stand in the way, in a way that that offers prospects of fuller living that make life more sustainable and meaningful… even in the presence of ambiguous loss.