By Craig Modahl
I have been a caregiver for most of my adult life. But one loss several years ago affected my family very deeply.
We had returned from Kevin’s fifth hospital stay in a year without a solution or a prognosis. He had been in our care for almost half of his 53 years. He had been declining for the last three years. We were frustrated, frightened, and exhausted. Kevin had a developmental disability and did not speak. He could not identify when things changed. In the last year of his life, he had lost his ability to swallow and was fed by tube to keep him from choking.
He was a chosen part of our family. He needed help with daily skills such as dressing and eating and participating in laughter, friendship, and growth. With his background of an abusive home, foster care, and 16 years in a state institution, stability and compassion were essential. When he became a part of our home, my wife, Sandy, and I had just started our married life together. We often joked that it was the three of us that got married. He lived in our home, shared in the birth and growth of our two daughters, and was embraced by our extended family and friends.
As far as we knew, he had never spoken words or communicated clearly. We learned his needs from observation, empathy, medical insight, and his patterns of behavior. It took deep connection, devotion, and attention to provide the care he needed.
Only a couple of days after that hospital visit, we knew another trip was inevitable. We did our best to make him comfortable in his favorite recliner, where it was easier for him to breathe, before we left his side for that night. Shortly after 5 a.m., my wife called, “Craig, come here! Hurry!” I found her in the room with Kevin, in tears. “I … I think he’s dead.”
It likely happened hours before. We were told he died from asphyxiation. His coughing irritated his throat, causing tissues to swell to a point where he could no longer inhale.
Our grieving for Kevin had begun long before this final event. But immediately after his death, we were consumed by the questions that are common for caregivers – whether friend, family, or professional. Had we done everything we could? Had we failed him? Did we miss something?
It was possible. We might have been able to prevent his death, but it would not have restored his life. When do we accept that prolonging is not living? His resilience had stretched as far as it could. We knew it had to happen. But still …
Our care for him was ingrained so deeply that we found ourselves doing things that no longer mattered. Planning for extra time for any event to get him ready. Getting up early to prepare him for the day center and being home at 3 p.m. to meet his bus. Looking back in a store to make sure he was still following us. Missing his laughter at the table and the sounds he made when he was having fun. The routine of his daily shower and personal care no longer punctuated our days. With his loss, a large part of what gave our lives purpose was absent. The meaning of “everyday” was altered dramatically.
What did we need in our grieving process? We needed people to affirm the intensity of our grief. We hadn’t only lost someone we had taken care of; we had lost someone that we deeply loved. When Kevin died, friends and family knew that it was hard for us. They were supportive and knew him enough to feel the loss themselves.
Those outside of that immediate circle seemed puzzled. Our relationship was ill-defined for them and seemed curious to begin with. Some even said that they didn’t realize how much he meant to us. They did not recognize that providing personal care could transcend task and become love. Our congregation responded with care and compassion, as they had gotten to know Kevin over many years. Our faith provided some comfort and reassurance. But it also called us to wonder and question.
The intensity of a caregiving relationship can vary significantly depending on the reason it began. Caregivers may be family members, others who had a prior relationship with the person, or people who do this as their profession. But no matter what their personal or professional status, they may still experience the full spectrum of grief. Professional caregivers can be deeply impacted by the loss of someone they didn’t know before their work compelled them to be at the person’s side. They may also have the additional challenge of dealing with repeated loss, and they may grieve differently throughout their career.
From a distance, it might seem like the end of the caregiving obligation would lead to relief rather than loss and grief. But the intensity and commitment of long-term, day-to-day interaction at the most personal level can develop a common identity with the person and deep personal relationships. When that person’s condition changes, the caregiver will change as well – not just their responsibilities, but their self-assurance, self-worth, confidence, and outlook.
The force of that connection must not be dismissed or diminished. It must be acknowledged and affirmed, understood, and addressed. Caregivers need assurance that they made life better, even as it came to an end. They need to know that their grief is real, meaningful, and valid. The essential element to supporting long-term caregivers is knowing that these losses can be very personal and impactful. Indeed, it may even surprise the caregiver in the end.
Craig Modahl, MSW, MDiv, is a caregiver in Port Washington, WI, and founded a nonprofit organization that supports people with developmental disabilities. He has taught a course on “Theology, Ministry and Developmental Disabilities” at Chicago Theological Seminary. His memoir of Kevin and their relationship, titled “A Needed Life,” is scheduled for publication in the summer of 2023.