This story occurred in the early part of the AIDS epidemic. In 1991, I was part of a coalition working to develop local home care options for AIDS patients. This was before the first AIDS treatment drugs became available, so the prognosis for someone with AIDS was not good. They got sick. If they recovered, they were likely to get sick again soon.
Back then, HIV disease was still an unfamiliar and frightening illness, even for medical personnel. The general public was concerned about becoming infected. The healthcare system was afraid that we might soon be overwhelmed with bedridden AIDS patients to care for. Home care agencies, both public and private, were worried about providing this care because they did not know much about AIDS.
So we created the HIV Case Management Network for agencies willing to provide home care to persons with AIDS. The network offered members training, support services and technical assistance. Even for-profit home care agencies joined. One of the many services we offered was to organize a memorial service for each network client who passed away.
In those early years, the network organized many memorial services. As the chair of the network’s advisory board, I received invitations to all these memorials. I did not know most clients personally or professionally, but I would sometimes attend to support our nurses and staff.
Most of the memorial services were uplifting. Someone would tell the story about the wacky road trip they took together in college, or how they had supported each other during a difficult time or some other touching personal tale. They would read a favorite passage or dance to his favorite song. There was a little laughing, some crying, a few quiet moments.
But one memorial service was particularly haunting. I looked around the room and walked right up to our program coordinator and said, “I know everybody here. Where are the friends and family?” She replied: “This is what it was like at his house. We invited them, but I guess he burned a lot of bridges in his time.”
Now, I knew many people with HIV and several were estranged from their families. But this was different. The guy was in his forties, dying and none of his friends or family could be bothered to visit him or come to his memorial. It’s hard enough coping with a terminal illness, but your last hours must feel especially empty, knowing that nothing you had done in your life mattered to the folks around you. My spiritual beliefs do not include a “hell”, but at that moment, I saw the worst hell I could imagine. I also saw the difference those nurses made in people’s lives.
According to the staff that worked with him, this guy was not a happy or pleasant person to be around. He was probably like that even before he became seriously ill. For those of us working with folks who have experienced toxic stress or trauma, our hope is that we can always help them to recover. We want to change the trajectory. We’re looking for a happier ending. It doesn’t always happen.
Yet, there is still a role we can play. Those home care nurses cared for him and were the only ones to come to his memorial. They made sure that no one should die forgotten or alone.
The third Friday of February is National Caregivers Day. Yes, I know there are literally thousands of these “Awareness” days, weeks and months, and even as a public health professional, I can barely remember more than a handful. But I hope this story gets you to take a moment to think about the vital work that all caregivers (including maybe you) do every day.
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