Thoughts on Touch Third of three sample chapters from Midwives of the Spirit: Thoughts on Caregiving, copyright 2002 by Jane Mary Curran. All rights reserved. To touch or not to touch? The decision begins with vulnerability. Here’s how it used to be: She gets up early in the morning, mixes homemade biscuits for breakfast, gets dressed, does her morning chores, sits on the porch for a while before going in to fix a bite of lunch. Then she drives to town to do a few errands including a stop at the bank, and finishes her afternoon by picking up the grandchildren from the school bus and keeping them until supper time. Then she cooks supper, cleans up the kitchen, sits down to watch some television, reads her Bible in her recliner until she nods off, goes to bed, and in eight hours starts all over again. That’s how it used to be. Now she’s bed bound. Her legs can’t support her weight. She’s stiff and sore from lack of movement, but when she tries to move the soreness becomes pain. She eats some of the breakfast brought to her and ignores the rest of the day’s food. “She’s depressed,” her caregivers say. “She’s lost her will to live.” Which may be true, but more immediately, she’s dependent for the first time in her life since she was a tiny child. And because she’s dependent, she’s vulnerable. Horribly, fearfully, vulnerable. Vulnerability has become a way of life with its attendant fears of inconsistent or less than helpful care. “Will she remember that I can’t chew big pieces of meat?” “Will he remember my evening pain pill?” “How long will I have to wait until they help me to the bathroom?” “Will she be careful with my sore hand?” So, what is touch to this woman who’s been independent and a caregiver herself for most of her life? Could it be that to her touch feels intrusive? Even insulting? Is being bathed or cleaned up a constant reminder of her inability to do these intimate and personal tasks herself? And an insult to her modesty? So, as caregivers with the best of intentions and expertise, how do we approach, respect, and affirm her humanity, her new vulnerability as she moves along her path? First, make no assumptions about how patients feel physically, spiritually, or emotionally. Let them direct and form the ways things are done as much as possible. Caregivers are there to empower, not diminish power or decision-making. With imagination and compassion, caregivers can invent new ways to allow patients plenty of personal space until the patients seem comfortable on multiple levels of interaction. It’s important to proceed carefully even with handshakes until it is clear the patients are ready and able to connect comfortably since the effort and pain of lifting an arm or hand may be an unnecessary expenditure of precious energy. If the patients are non-responsive, continue to make no assumptions that they wish their hands held or their heads rubbed or touched. Until caregivers have a picture of what patients would have wanted when alert, we need to go slowly and carefully when choosing how to connect with people who are not able to say what they want or don’t want. Second, employ the same respect we would extend to strangers in the grocery store. Would we walk up to strangers in the frozen food aisle, take their hands, start rubbing their arms, and begin adjusting their clothing? If not, why do we assume that this is appropriate interaction with a person who is very sick? Probably because we want so much to do something, and we know perfectly well that there is nothing we can do ultimately to fix the situation. If we don’t grab the hands of strangers at the dairy case, then respect and courtesy require the same respect to strangers in their beds. On a practical note, we who visit dying people have a very small piece of their personal and family history. Even if we know some facts, people’s lives have extended far beyond the knowledge we have at this end of their journeys. Physical, emotional, or sexual abuse is sadly almost commonplace in our culture. In that demented twilight that many people experience at some time before they die, they may confuse the present moment with fear filled moments from their pasts, possibly based on unresolved issues of abuse or dysfunction. If a caregiver approaches the bed of a person in that moment, old experiences can be revisited. Because we are unaware of patients’ full histories, we might be the unintentional source of some frightening, painful memory or dream. Always knock on the door of the room. Approach the bed slowly. Announce who and what you are before reaching for the patient. Stand still. Don’t loom over the bed. If possible, sit down. A last comment about touch. It is essential to separate what we as caregivers imagine we want for ourselves from the needs of the patients in our care. So, if the patients’ wishes come first, caregivers will need to do the personal homework of discovering what we believe and desire for ourselves. Because we think we would enjoy having our feet massaged does not indicate that same enjoyment in others. Thus we are less likely to place our own desires onto vulnerable patients who may have no such desire for the touch and concern we think is comforting for them. Touch is an intimate and individual choice. So we end where we began–with the vulnerability of the patient, with making no assumptions about what is best in their situations, and showing the respect we would show to any person we might encounter.