The following essay expresses some of my thoughts on the experience of being a caregiver. I am both saddened by the need to be in this role because of the suffering my wife has had to endure and grateful that I have the flexibility and resources to devote myself to “the most important job” I’ve ever had in my life…..
John M. Gerber
Those of us caring for a loved one diagnosed with a terminal illness know suffering. Caregiver suffering is different from that experienced by the loved one, but is still the “flip side of the same coin” – intimately connected through the pain and confusion caused by the disease. When we first learn of a terminal prognosis for someone we love, it may feel like we’ve been pushed off a cliff and are flailing and falling out of control, trying to cling to our loved one who seems to be just out of reach – and falling even faster. Looking for a way to stop the fall we desperately grasp for facts about the illness, information about potential treatments, alternative therapies, and perhaps even stories of miracle cures – something to ease the pain and end the feeling of powerlessness.
Initially, anything is welcomed that even temporarily diverts our attention from the suffering associated with this earth-shattering diagnosis. We search the internet for reasons to have hope (which we define, at least initially, as a cure). But a terminal disease will drive us relentlessly into the realm of suffering, a universal human experience. Demonstrating the common and connected nature of human suffering, both caregiver and receiver may relate to the following passage by Kathleen Singh from her book, The Grace in Dying*, describing the suffering caused by the diagnosis of a terminal illness. Singh writes….
“Living with a terminal illness is a process of suffering. There is suffering from the moment of awareness of a serious illness, the pronouncement of the diagnosis. There is suffering in the grim rounds of doctors and waiting rooms, incisions, injections, surgeries, invasions, prostheses— traumas to the sensitive flesh. There is suffering in hearing the doctor’s words, no matter how kindly or coldly he or she may say them. And then for weeks after, holding up those words like a tiny crystal ball and examining them to extract every possible micro-nuance of hope or meaning— this is also suffering.
“There is suffering in saying good-bye to all that one cherishes: family, friends, memories, beloved and familiar inner landscapes, the comforting gaze and touch of those who love us. There is suffering in the letting go of each of the thousands upon thousands of things, events, and people upon which we have based our sense of self and our sense of our life, who we think we are and what we think our life has been about. There is suffering in the perceived loss of a future.” *
While suffering can surely be lonely, caregivers may also come to value the increasingly intimate bond that can grow between themselves and their loved one. With mindful awareness, this shared suffering may also grow to be understood as part of the universal experience of human suffering. That is, the personal “my suffering” may be seen as part of the universal “all suffering”. And while painful, this awareness may be the first step toward healing the caregiver’s sense of aloneness.
There are of other means of “healing the sense aloneness” for the caregiver. These include friends and loving family members who continue to show up to provide support (and food), and a willing ear to listen as the caregiver tries to cope with their new role. There are also many social media platforms that allow caregivers to share their experiences, fears, frustrations and joy with each other. Sometimes unrecognized in this quest for caregiver healing are spiritual tools such as mindfulness meditation.
Mindfulness helps us “be present” to our loved one’s pain and frustration, helping us to experience compassion with equanimity and grace. We may in mindfulness practice be freed from the illusion of the separate and limited self, which according to the Buddha, is the source of suffering. Mindfulness may allow us to live with serenity, even under the crushing weight of a terminal illness, by helping us to expand our conscious awareness from the personal “myself” to the universal and eternal self.
Personally, I have found that other spiritual practices help as well. Learning to “live one day at a time” (being present in the moment), working to accept “life on life’s terms” (acceptance), and praying to “turn my will and my life over to the care of a power greater than myself” (all 12 Step teachings) have quite literally been a Godsend. The same tools that help free us from addiction also may provide a source of healing from the feeling that psychologist William James called “zerrissenheit” or “torn-to-pieces-hood”.
Mindfulness meditation and other spiritual teachings practiced routinely during “normal” times, may allow us a sense of peace and serenity, even when our world is splintering apart. Practiced under the unwelcomed conditions of a terminal illness, spiritual teachings may help us let go of the isolated, small self and experience the universal, eternal self which allows us to be fully present to whatever truly is. Again, Kathleen Singh writes that a terminal illness….
‘… captures our attention and returns it to the present moment. Healing, automatically and naturally, unfolds out of being present to whatever is. Terminal illness is a situation with but one exit. There is no escape. The condition of no escape focuses the attention; it enforces mindfulness. Terminal illness causes us, many for the first time, to look within. It well might be the only experience powerful enough to force most of us to begin looking at who we think we are and what we think this life is about… It brings us into contact with ourselves “in a way that none of the stumblings of a lifetime’s attempt to maintain a self-image have accomplished.”
As a caregiver, our “stumbling lifetime efforts” to maintain a self-image of public accomplishment, personal competence, independence and success may be stripped away by the greater need to care for someone we love. Our self-identity may be radically transformed as we become someone who discovers fulfillment from the simple act of helping the person we love put on their socks and shoes. We may discover that we no longer find meaning in the monetary rewards or public recognition of a career but instead encounter joy in humble service to our loved one’s personal needs. Loving service and mindfulness practice may begin to heal the feeling of being “torn-to-pieces.”
Our very understanding of the word “healing” may shift slowly from a cure for the illness, which will always be our most desired outcome, to include learning how to live with a terminal illness with dignity and grace. Katherine Singh writes…
“Living with terminal illness is, paradoxically, a journey of healing… Healing is the process of becoming whole. Healing comes from the Anglo-Saxon word haelen, which is the root word of our interrelated concepts “healthy,” “holy,” “healing,” “whole.” Healing involves the restoration of our integrity, our wholeness. Healing involves living with the fears generated by our creation of boundaries between self and parts of self, between self and others, self and world, self and God— acknowledging them, coping with them, adjusting to them. Healing involves opening ourselves to the depth of our wounds. Healing is not a cure.”
While a cure will likely remain our greatest desire, if we live with a single-minded focus on the hope for a cure, we are not likely to experience the spiritual healing available to us through the mindful path of acceptance. This does not mean that we give up hope for a cure. It does mean however that we choose not rely on the hope for a cure to get us through the day – everyday.
Well meaning friends and family like to tell us that “we have to have hope” – ignoring the reality and relentless nature of the terminal disease. But as some of us have learned “hope can be a painful playground.” Singh describes the limitations of hope….
“During the ups and downs a of terminal illness, it is hard to say whether hope is taken away or hope is given up. Hope becomes difficult. The person is torn between the desire to live and the fear that allowing hope to emerge one more time would only create more misery. Because it has no reality, the strain of ‘staying hopeful’ wears itself out. Hope is finally seen for what it is: a clinging to a wish for something other than what is. When hope evaporates, we are left with the here and now.”
When hope evaporates, the “here and now” that remains can be hard, really hard – but suffering may give us the motivation needed to initiate or continue our spiritual practice. The inexorable direction and pace of the disease pushes those of us who have taken on the role of caregiver to live in the present moment and begin to understand who we truly are. As primary caregiver for my wife of the past 47 years, who was diagnosed with ALS or Lou Gehrig’s Disease, the answer to the universal questions “who am I?” and “what is my purpose in this life” has become clear. Today, due to this awful disease…. I know who I am – and I know what I am called to do. Being a caregiver has become my primary purpose.
Having had a successful career as a university professor, I thought I knew who I was. But when my wife was diagnosed with a terminal illness, I found my life’s purpose shifted to be much more meaningful than that circumscribed by an academic career. My own “stumbling lifetime efforts to maintain a self-image of public accomplishment, personal competence, independence and success” were shattered by the reality of Amyotrophic Lateral Sclerosis.
My sense of personal identity, my ego-self, was torn to pieces through shared suffering, which opened my consciousness to a larger sense of selfhood that I’ve experienced occasionally and fleetingly in mindfulness meditation. What was important to me in the past, no longer was. Taking care of the simplest daily needs for my wife became both urgent and fulfilling. To be clear, while I often feel gratitude for this expanded sense of awareness of self and great fulfillment in the work of caregiving, I would not wish this psychological and spiritual growth experience on anyone. It comes with too much pain.
Nevertheless, I’ve learned that through both spiritual practice and shared suffering, a caregiver may experience a profound connection to something larger than our limited selves. We may learn that we are radically interconnected with all other humans – but we are more. We exist deeply embedded in a natural world that provides us with sustenance, a home, and examples of beauty. We are quite literally “stardust come to life” created by the cosmic birth of the universe from a singularity that exploded, expanded, cooled, and formed the planet Earth, from which all living beings have evolved.
This awareness may open us to experience the small “myself” as part of a larger family-self, which itself is part of a community-self, earth-self, universal-self and divine-self. The love I feel for my wife is part of something larger than either of us. Experiencing life through the lens of an “expanded sense of self” has begun to help me understand that I am part of a universal or cosmic consciousness. Today I believe that I am a beloved “child of the universe” – and so are you.
We reside on this earth, in these bodies, temporarily limited in space and time, yet able to experience the fulfillment of a universal and eternal consciousness that is our real home. This experience of what some call unity or cosmic consciousness may come to us through meditation and prayer, but it also may arise through loving service and shared suffering. Caregiving for someone we love offers us both the joy of loving service and the tragedy of shared suffering.
None of this however should minimize the realty of the suffering that the ego-self, no matter how limited and temporary, experiences during a terminal illness. It is hard, really hard. We cry a lot. Nevertheless, I know from experience that healing and wholeness acquired through mindfulness and shared suffering is possible for caregivers. In the process of healing we may find a source of energy that allows us get through the day (and night), and discover that slowly over time gratitude may replace anger, and deep sadness can be balanced by moments of intense joy.
Loving service and shared suffering coupled with spiritual practices may result in the healing of the “temporary” ego-self as we wake up from the illusion of separateness. As awareness of the intimate and loving connection we have with each other grows, we may also become open to a divine presence, a great spirit, Atman, Buddha Nature, or the unity or cosmic consciousness that some people call God.
And we may find that love is at the center of it all…
*Singh, Kathleen D. 1998. The Grace in Dying. HarperOne.
For a related essay on “The Withdrawal and Isolation of the Terminally Ill, see:
https://changingthestory.net/2019/03/30/alone/
And for my experience as a caregiver, see:
https://changingthestory.net/2019/08/14/caregiving/
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Changing the Story 
thank you. as a caregiver to my wife who has als, i found your words helpful