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The Intimacy of Care

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In hospice, superficial details of personality and pose drop away

Being with people at the end of life as a volunteer caregiver with Zen Hospice Project for the past 15 months has felt like finding home. I’m so moved by my experiences at the beautiful residential Guest House in San Francisco that I’ve decided to change careers and become a hospice nurse. I’ve found my calling. I’ve loved my previous careers (children's art educator and mindfulness/relationship coach), however, tending to the dying gives me more fulfillment, richness, and meaning in life than any other vocation.

No longer a volunteer, I have recently joined the nursing staff at the Guest House as a Certified Nursing Assistant (CNA), responsible for the very intimate work of bathing, feeding, grooming, and comforting the dying. I feel this very intimate care is a deep, deep honor. I begin a Licensed Vocational Nursing (LVN) program in the fall.

Being a CNA at the Guest House is unlike being a CNA at a nursing home, hospital, or any other healthcare setting. Typically CNAs are overworked, underpaid, and with too many patients to attend to. They are required to rush through the delicate tasks of personal care on a tight schedule to get everyone bathed, dressed and fed. Patients can all too easily become infantilized or even dehumanized as merely "jobs to do" in those pressured and clinical environments. The Guest House is quite a different experience with its high ratio of caregivers to residents and committed philosophy of mindful and compassionate care. We are able to take the time to tenderly attend to our residents and spend time just being with them as valuable human beings.

On one of my recent shifts at the Guest House, a new resident, “Debbie,” was in a state of terminal agitation – a condition of extreme restlessness and confusion common for people close to the end of life. Although totally bed-bound and unable to stand or even eat, Debbie persistently tried to get out of bed, murmuring that she had papers to sign. Her eyes were fixed, heavy-lidded and glazed when open, only occasionally able to focus briefly on mine when I said her name. She could answer short, direct questions in a barely audible mutter; otherwise she was immersed in the end stages of her terminal illness.  

I changed her incontinence briefs, repositioned her to prevent bedsores, and helped her take small sips of water. Tending to her fragile body in these intimate ways, I deliberately transfused my careful handling of her with tenderness and respect. She was as comfortable as I could make her but she continually curled forward and to the right, reaching out with her left arm in a tense, crooked arch, trying to get out of bed – her withered muscles in relentless contraction, her movement suspended in a trembling, twisted hunch.  

Fearful of her falling and hurting herself, I sat close at her bedside, meeting her body with mine, letting her lean into me. I asked her to lie back against her pillows. Occasionally she would try but her contracted muscles never let her soften and relax into the embrace of the bed, and soon she would be curling forward in a rigid, determined reach again. A small dose of medicine did not do much to relax her persistent, tight crouch, so I just sat with her, curling toward her as she curled toward me.  

Our heads were close. One of my hands supported her forward moving shoulder, the other held one of her hands. This proximity deepened the sense of intimacy as we breathed together. I spoke softly to her now and then, reassuring her that all the paperwork had been taken care of and that she was safe here in her bed. I spoke simply and clearly about the lovely fresh air coming in the open window from the cool rainy day and about the classical music she had playing, gently orienting her to the room.

It seemed she was hearing me – she would attempt to smile and make a small noise in response, yet was unable to really speak more than a few mumbled words. I imagined a shared awareness of each other. She seemed present with me, there, just not able to respond much. I sat with her for a long time in that intense, quiet and tender space, my body posture meeting and mirroring hers and doing my best to keep my muscles relaxed for both of us.  

My guess was that Debbie would die within 48 hours. I wondered about her life of nearly 70 years, knowing only a few biographical details, wondering what she was leaving behind, what was unfinished, unsaid, what her joys and sorrows had been. She knew none of the details of my life either. Sharing this time together at the very end of her life, meeting in this intimacy of illness and caring, meeting in the reality of our shared human mortality, was more affecting and connected than many other interactions.  

The intensity of being with a fellow human in such a vulnerable state, in suffering, approaching the end of her everything, is a profound experience that opens, softens, and nourishes my heart. And I know that one day I, too, will need to be cared for in this way. Ideally, we all take turns caring for one another.

This deep and instant intimacy with people at the end of life is one of the gifts of this work. Superficial details of personality and pose drop away from both of us and we meet in raw and tender humanity in all its forms. I meet gratitude, fear, irritation, frustration, confusion, love, sadness, and more in the people I work with and, at the same time, in myself. And more often than not, I’ve learned to meet it all with a deep feeling of love and compassion, cultivated by my own intimacy with the pain and love of life.  

Read more from This is Terminal:

Aromatherapy Triggers Memories and Relief for the Dying

Born to be Wild at the End of Life

Loving and Letting Go at Zen Hospice Project