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By Anne Plett
timbrel, May-June 2000
My brother suffered from lupus for 21 years before dying at the age of 39. As we lived with and cared for him, our family learned much about loving without clutching, appreciating without judging. We learned how to offer help without insulting his dignity, how to invite rather than demand. And we learned to be respectful of each other so that we might give care to each person as needed. Together we were students of that most marvelous lesson: the mystery of unconditional love. And we were blessed.
Caring for terminally ill people became my profession, and often I am asked how I keep myself from burnout. People seem to assume that caring for the dying drains one of life.
But I find that caregiving helps to heal my own hurts. As a caregiver my journey to healing is intertwined with my patient’s journey. Companions on the road, we become each other’s teachers.
Let me be clear—I am not suggesting that prolonged work with ill people isn’t emotionally demanding; quite the opposite. Physician and psychiatrist Elisabeth Kubler-Ross described the emotions a person experiences when she learns that she is dying: denial, anger, bargaining, depression, and acceptance. It is my observation that caregivers and grieving family members go through the same emotions, often very randomly.
These emotions are real. Caregivers should expect and validate them. But we can hope to end up with more than a dull resignation.
This has to do with another concept popularized by Kubler-Ross: “unfinished business,” the idea that a patient has matters she needs to work through—whether practical responsibilities or unsettled relationships—in order to find peace. Caregivers experience the same thing. Whatever unfinished business we have in our own lives will be carried into our caregiving role. We need to deal with those issues if we are to avoid burnout and be healed ourselves. If we don’t find our own healing, we can’t help heal anyone else.
Think of it as a warning system: each time I find myself getting ugly and angry, it’s a signal that something is unresolved or unwell in my life. Realizing this gives me the opportunity to deal with it.
Health is so much more than the absence of disease; it has more to do with wholeness, with holiness. It has to do with salvation: our realization of the Creator’s unconditional love for us, and our response to that love. This is true whether one’s body has 20 years left to live or 20 minutes.
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How to Cope in Caregiving
On feelings:
Don’t think you always have to be the “strong one” with your emotions in check. There is no right or wrong way to grieve. Let yourself feel whatever you feel. Sustaining a facade of cheeriness requires a great deal of energy that could be used in other ways—and it robs you of the opportunity to share your fears and anxieties with others.
At first you may need to be angry. Anger takes a lot of energy, but in time that energy can be harnessed into constructive work. Talk about your feelings to whoever will listen, whomever you can trust. Talk to yourself if need be. Seek out a fresh pair of ears. Journaling can also be helpful.
Sometimes you may feel overwhelming sadness. Cry—tears will make you stronger. Give yourself private time to experience sorrow; don’t run away from it. Experience it, then be good to yourself. Be gentle with yourself.
If you find that you’re experiencing more than sadness—a constant depression which nothing can lift—talk to a professional counselor.
On receiving help from others:
Caregivers often fear that if they accept help—from friends or agencies —they will lose their independence. This isn’t necessary. If you set limits, people usually will respect them.
Clearly inform others what is helpful and not helpful. Don’t wait until you’re ready to throw the next casserole out the window to explain your preference to go out for a meal.
Some friends may not be comfortable around illnesses and therefore will be unable to cope with your role as a caregiver. Accept that a few will fall by the wayside, at least for a time.
Illness doesn’t tend to make poor relationships better; in fact, existing tensions may worsen. The caregiver may end up feeling the effects of these tensions even more than the patient. A counselor may be needed.
On self-care:
Long-term illness can drain away our ability to experience joy and beauty. Resist this. Set aside time regularly for renewal and pleasure— perhaps gardening, playing with children, or listening to favorite CDs.
Establish a place of refuge where you can go without being disturbed. It might be a room of your home, a coffee shop, a comfortable park bench.
Learn to live in the moment, looking for the delight and respite found in everyday things. Gifts surround us, whether in nature, loving relationships, or a peal of laughter.
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