What Comes Next?

All caregivers at some point in time face the question, “what next?” The question may pertain to quality of care, medical diagnoses, the hurdles of daily living, or end of life issues. Even after we get through all those questions with our loved ones, after the doctor’s appointments, after the meal preparations, after the constant care, the question exists, perhaps stronger than ever after death. What next?

I learned that for many caregivers that question is coupled with guilt. The guilt hides in the corners of your mind, waiting for the moments at night or early morning when your thoughts wander toward your loved one. It is a guilt born of denial, a guilt that says the doctors and nurses and medical knowledge were incorrect. There must have been, should have been, a way to save our loved one. But we let them die.

Never mind the fact that as caregivers we did everything humanly possible to... well, to care. Forget the sleepless nights or lack of a social life. Did we give them enough food? Did we give them the right kind of food? Did we help them get enough exercise? Did they get too much exercise? Were we just not strong enough to sustain their lives?

I know that my father had a disease with no known cure. I know that we did everything we could for him. Yet, somehow, when it came time to phone my relatives and tell them the end was in sight, I found myself apologizing. “I’m so sorry,” I said to my Uncle Sonny. “I tried, you know, but…”

“What are you talking about?” he shouted at me. “What else could you do? You did everything you could, this is just the way it is.”

I think that most caregivers are faced with the daunting challenge of accepting what Uncle Sonny called “the way it is”. Very rarely do we work so hard and sacrifice so much to be rewarded with loss. Yet that is the lesson most caregivers learn. Our loss is our reward.

I think the important part of this lesson is in remembering that our loss is our loved ones benefit. We gave what we could, we cared as best we knew how, but sometimes, despite our illogical belief in our powers, healing occurs only with death.

Once we are able to accept this idea we can begin to pick up the pieces. We can stop blaming ourselves for an event we could not control. After that, maybe, sometime in the not so distant future, we can begin to face what comes next.