Caregivers Wonder: Why Does My Relative Suffer?

“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? 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.

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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.