Conclusion - So What Do We Do?

Joyce D. Davidson

Today my friend Helen told me about her recent hysterectomy. She said that as she went to the hospital alone that morning she was more terrified than she had ever been in her life. She thought her knees would buckle. With her heart pounding, she stepped onto the elevator, and then another woman got on. As the two rode the elevator Helen couldn't stand it any longer and blurted out, "Please, please tell me you're having a hysterectomy, too!" The woman said yes, she was. Helen told me that an immediate, overwhelming sense of relief enveloped her, and as the two women approached the reception desk in the surgical area, she called out brightly, "Two uteruses to go, please!"

Now, the other woman's presence had absolutely no bearing on Helen's surgery, but it had everything to do with her feelings about it. Somehow, no matter what we humans are going through, nothing gives us more comfort than the presence of someone with whom to share our journey.

That may be an oversimplification of what we, as professional caregivers, are called upon to do for the family caregivers we support, but that's basically it. We are called to be, as the song goes, their "brave companions of the road."

Both being brave and being a companion, however, are enhanced if we equip ourselves for the trip. The goal of this book is to do just that. It reinforces the importance of caring presence, practiced expertise, and vigorous advocacy.

There are those who are particularly suited to providing empathic presence and active listening-what Doug Manning (1999) refers to as the three H's: someone to Hang around, Hug them, and Hush. Others' talents may lie in connecting caregivers to concrete services and community resources, or in providing hands-on medical care. Still others are drawn to the arena of public policy and community networks. All are essential. That is one of the miracles of humanity-that all of our gifts are needed to enhance our own lives and the lives of others.

No matter where our gifts and our skills lie, we are best equipped when we bring to our calling a balance of head and heart. Families are helped most when we are calm, capable and compassionate. Manning emphasizes two key concepts in providing support to family caregivers: first, understanding, and second, significance. Caregivers often minimize their suffering because the patient's suffering is 'so much worse.'

"Large sorrows," says Manning, "hit us out in the open and we are well aware of their effect on our lives. Small sorrows creep in unaware and silently collect in the bottom of our soul." (p. 30) Validating the significance and meaning of the caregiver's experi­ence is our most basic task. The opposite of understanding, says Manning, is not misunderstanding, but trivialization. It is impor­tant that we not only validate the significance of the caregiver's experience, but also encourage them to advocate for themselves with family and friends who may complicate their caregiving role. Manning offers the "Primary Caregiver's Bill of Rights" (p 71):

  • The right to rest
  • The right to honesty
  • The right not to be second-guessed about medical decisions
  • The right to family sensitivity about time and expense
  • The right to receive thanks.

And finally, we must open ourselves to experiences of extraor­dinary grace, even in the midst of sorrow, suffering and exhaustion. In a recent magazine article, Elizabeth HaIling, one of the contributors in this book, tells the poignant, powerful story of her family's journey with Gabriel, their severely disabled three-year-old son. She describes Gabriel's birth defect as the "hollow in the center of his brain . . . that invited in sadness, which sits at the kitchen table with us at every meal." She talks about a grueling caregiving sched­ule that goes from six in the morning to ten at night, the house full of medical equipment, the multitude of appointments with doctors and therapists, repeated hospitalizations, her husband's career sacrifices in order to care for Gabriel-and the exhaustion, the fear, the anger, the heartbreak.

But she also describes the "small but deeply fulfilling moments of unexpected happiness." They go to church, she says, not to ask God to fix Gabriel, but to "bow our heads and receive our blessings, and we are blessed to know what our blessings are." She speaks fondly of the church ladies who "smile and bring us cakes and casseroles," and others who pray for Gabriel and "reach out to touch his little cheeks and turn around in the pew to get a look at him."

These are moments of grace, which Anne Lamott (1999) describes as "unearned love-the love that goes before, that greets us on the way. . . the help you receive when you have no bright ideas left, when you are empty and desperate . . . . The light . . that takes you from that isolated place and puts you with others who are as startled and embarrassed and eventually grateful as you are to be there."

All these experiences and emotions make up the caregiving experience. It is our charge to bear witness to the whole of it and to hold it in our hearts. To embrace ambiguity with serenity. To forgive patients and families for their imperfections and to forgive ourselves for ours. To remain open so that we may give without breaking. To acknowledge the profound significance and meaning of each family's journey.

To be their brave companions of the road.

Joyce D. Davidson is an end-of life and crisis/trauma counselor at University Hospital in Newark, NJ. She also provides bereavement support at Broadway House in Newark, a nursing home for AIDS patients. She is a clinical assistant professor at the University of Medicine and Dentistry of New Jersey. Ms. Davidson co-edited three of Hospice Foundation of America's Living With Grief books.

© 2001 Hospice Foundation of America

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