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Caregivers Wonder: Why Does My Relative Suffer?

Ways to find acceptance and avoid the blame game

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“Why did this happen to him?” asked Margaret, the devoted wife of 72-year-old Don, who had had a major stroke. “He didn’t deserve it. He is a wonderful man.”

She was not asking me during this psychotherapy session for a medical explanation so much as a spiritual or philosophical one. What purpose could her husband’s stroke serve? What sense could it possibly make?

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I felt Margaret’s distress but had no answer for her. Nor did I know how to respond to the many other caregivers over the years who have posed the same basic question about their relatives’ dementia, traumatic brain injury, cancer, Parkinson’s disease, bipolar disorder, chronic pain or COPD. I empathized with them, but I, too, struggle with why we suffer.

Some caregivers believe there is no reason for suffering and little sense in wondering about it because it is part of the human condition. Others do wonder about it but do not dwell on it while immersed in caregiving tasks to attempt to relieve that suffering.

For Margaret, though, finding some explanation mattered greatly. Like many people with strong religious views, the conviction that life should be fair, or the expectation that, as the old saying goes, “what goes around, comes around,” she believed in a “just world” — that is, people ultimately get what they deserve.

She asked herself things such as “Did Don do something terrible earlier in his life that warranted his suffering now? Did I? Am I still unknowingly doing something wrong?” These questions added to her anguish.

Long before their relatives become sick, injured or disabled, family caregivers have developed the values, beliefs and life perspectives that will shape their responses to caregiving. Yet even when bad things happen and they become caregivers, they can still find different meanings for their loved ones’ suffering and their own. They might even come to greater acceptance of it. Here are some ideas for how:

Find your own answer

For more than 40 years, the book that many caregivers have read to understand why their relatives suffer has been When Bad Things Happen to Good People, an international bestseller when it was first published in 1981 that is still sold in many bookstores today. Written by Rabbi Harold Kushner, who died in April at age 88, it describes his struggle to reconcile his strong belief in an all-loving God with the fatal genetic condition that caused his son’s lifelong disabilities and death as a teenager.

How could God let this happen to his sweet, innocent son? Kushner asked. After much internal debate, his eventual answer helped him better accept his son’s loss and salvage his faith: God controls the world but does not guide every step of our lives and should not be blamed for all the terrible things that happen to us.

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Whether or not you agree with Kushner’s explanation is not his most important point. The first word of his book’s title is “when,” not “why,” I believe, because he did not want readers to think he was promising to give them the reason for their family tragedies.

Instead, it is as if Kushner was saying that, while suffering the most, caregivers must reach for some comprehensible reason of their own — piecing together scraps of medical information they have heard, the cherished wisdom of teachers and mentors, and remembered spiritual tracts and song lyrics — to make meaning out of what seems otherwise senseless and unbearable. He would contend it is through discovering their own answer that families may derive some vital lessons and find small solace.

Seek helpful meaning

Not all the answers caregivers figure out, though, are equally helpful for coping with suffering and loss. Some can even be harmful.

If caregivers blame the person who is suffering — imagine Margaret saying, “Don never took care of himself,” for instance — then they may feel more embittered by the tragedy that has occurred and less empathetic toward the person they are caring for. If they blame themselves — imagine Margaret saying, “It was my fault for not making Don stop smoking” — then they may become depressed and suffer more.

Kushner would likely point out that, when bad things happen to good people, it is still better to seek the realistic good in ourselves and in our world, rather than deciding everything is random and dire. For instance, he would probably agree it would be better for Margaret to say, “God is testing me and Don” than if she concludes, “God is punishing us for sins we never realized we committed.”

With a test, she could try to muster all her efforts to pass it; with a punishment, she might sink into resigned despair. Kushner’s legacy to us is to grieve our losses, ponder the reasons for why, but then find answers for going on.

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