A Siblings' Guide to Recovering Caregivers

It is much easier to fall into caregiving than it is to fall out of it. Raised in the middle of the 20^th Century by parents whose lives were defined by World War II, we were taught to care for family, pets, and farm animals, although not necessarily in that order. Our father taught us, as siblings, of the importance of looking out for one another. Neither of us suspected that the person most responsible for teaching us how to be good caregivers would one day need us to care for him.

And care for him we did, through the deaths of 2 wives and his oldest son, a serious tractor accident, hypertension, several transient ischemic attacks (TIAs), and cancer, and all of those coincident with ten years of living with dementia. Our father's dementia became the defining force of our lives and it brought us closer as siblings. We reminded each other to act like adults around our father, rather than like his children. We problem-solved together on how to take away driving privileges while preserving dignity. (We replaced the ignition key of his red Mustang with just the door key and encouraged Dad to read the newspaper every day from the driver's seat.) We worried together, wondering if we would have to pick the lock on his bathroom door to rescue him again should he have another TIA while taking a bath. We were part of the medical team that worked on multiple lifestyle choices. These included reducing his risk for falling while on his 5-mile-a-day walk around the neighborhood; on finding a way to support his preferred diet of chicken nuggets with honey-flavored dipping sauce, followed by ice cream and cookies; and on supporting his right to discontinue a dementia medication that was giving him diarrhea.

Together we learned to laugh together over Dad's insistence that because Nina was just the cook, she should be told to go home at night, but she should be told nicely because she was a good cook. We groaned and laughed over his love for rides in John's pick-up truck, where he delighted in reading, every time, the price of gasoline at every gas station passed. Moreover, we even learned to smile and shake our heads over trips to the emergency room, following a fall on one of his walks, where Dad was greeted by name when he entered, and we were greeted with emergency room phone calls to the police to come interview us about possible abuse.

When Dad died, we had to learn to address our grief and our loss of focus. No one had taught us how to stop caring. We had to learn how to redirect our lives. We were no longer a team, and each of us had to find our own way. On our separate journeys, we developed very different solutions to learn from, adjust to, and move on from, our caregiving of our father.

John has become a certified nursing assistant, which allows him to volunteer at a hospice unit where he serves as a witness to the presence of death for people who are alone. This allows him to continue to care for others, but he chooses who they are and at what level he participates. With the distance of time, John has learned to process his feelings through poetry. He did not have the emotional distance to write his poems during the caregiving process but, following the death of our father, he began to heal through his poetry. Only during the aftermath, over the distance of time, could he face his feelings of accomplishment, pride at a job well done, and grief at the loss of the force that had defined his life for ten years.

One of his poems directly addresses dementia. In writing this poem, he reaches out to other caregivers following that same journey. In order to both teach others how he coped and to reach a greater audience, his poem speaks of a woman living with dementia, because more women than men have...