September 18th is National HIV/AIDS and Aging Awareness Day. Today the ACLU of Nebraska sent a letter to nursing facilities in Nebraska that discriminated against John Shelor because he was living with HIV. His daughter, Courtney, shares her family's story.
Father, Grandfather, Protector, Best Friend, and Hero, John Shelor. My father was only 57 years old when he was diagnosed with HIV and dementia. It is hard for any daughter to become a caretaker for her dad. The fact that I had to deal with discrimination alongside health care issues is something no family should have to face.
My dad was a hardworking businessman, always dressed to the nines! He loved to sing, dance, tell jokes, golf, and spend time with me and his granddaughter. I was a daddy’s girl from the moment my mother passed away when I was 13 years old. We did everything together. He protected me from the outside world; his favorite line was “It’s me and you against the world, Beeb.”
He took care of my mother for 7 years as she battled brain cancer at the young age of 31. All the while taking care of me, on his own when I was only 13. Seeing all of this and growing up watching this man, handle everything that came to him with the utmost respect for others and unconditional love for his family is who made me who I am today.
In 2008 my father and I moved to Washington, DC. When we had no family around for thousands of miles, we learned he was living with HIV and the beginning stages of dementia. I knew right then and there, it was my time to step up and take care of him.
After a year of scheduling doctors’ appointments and helping to bathe and feed my dad, I made the decision to move him closer to family that could help me take care of him. In small town Nebraska, the cost of living wasn’t so high and we could survive on what little money he had in his savings. During the next 4 years, he was doing well, his HIV had been under control and we were now only working on the changing stages of dementia.
By 2013 he was no longer able to live on his own. I packed my life for the past 24 years and moved from Washington, D.C. to Bertrand, Nebraska, so I could be the sole caregiver for him. I enjoyed being around him again, helping him and offering a shoulder to cry on when he needed it. As the years went on, it got harder and harder to take care of him on my own, while also being a single parent to my one-year-old daughter. He was going through depression and when we tried changing his medications he ended up having bad hallucinations. We became very frustrated with one another and could no longer enjoy each other’s company. We were a caregiver and a patient when I so longed to be daughter and father again.
My dad’s frustration stemmed from struggling with his progressive dementia and seeing his daughter struggling to care for him.
After months of praying and trying to figure out what to do to make our lives “better” again, I came to the realization I wanted to be a daughter again and not the caregiver. Like he had always taught me “it’s me and you against the world, Beeb.”
I started making some phone calls to nursing homes in the area starting. The closest one to us couldn’t work because he was wandering at night and they did not have a locked unit to adequately care for patients with severe dementia. The next closest one had no beds available. The third closest one seemed like it would be a good fit; but a staff member said they couldn’t take him because they didn’t have the right air system for someone with HIV. I broke down and cried. I figured I was all on my own until the end.
Because everyone was saying no, I had just figured it wasn’t discrimination. It couldn’t be discrimination if everyone was doing it, right?
My aunt took time off work to start calling every nursing home within 100-mile radius from our home. Call after call, we were told no because my dad had HIV. Because everyone was saying no, I had just figured it wasn’t discrimination. It couldn’t be discrimination if everyone was doing it, right? But some family members saw how frustrated I was and suggested I contact the Nebraska AIDS Project. They were very shocked to hear so many places, six of them in particular, would say no because of his HIV. They contacted the ACLU for me while I continued to make more phone calls.
About a week and 16 “no’s” later, I finally found Broken Bow Nursing Home. and they welcomed us with open arms! They had never had anyone in their facility with HIV but knew they could care for my dad. I was so happy even while being a little concerned because the nursing home was over an hour each way from our home. I was going to be able to be the daughter again, and some of my prayers had been answered. Broken Bow even helped with getting my dad approved by Medicaid the day before they said we could move him in.
It was March 20th that we were able to move him in. After a few weeks of him getting adjusted he won the hearts of the nursing home staff with his humor and kindness. The staffed helped me with anything I needed. July 22nd was the last time I saw my dad sitting up, talking, and doing a little chair dancing, as music moved his soul. Two days later, I went to see him and he struggled to breathe. We started making arrangements to get him home so that he could pass away surrounded by loved ones. Some of the staff came to the office on their day off to say goodbye to him. Some staff asked me to let them know when the funeral was because he had touched their lives.
He came home on July 31st and passed away that evening surrounded by loved ones at 9:15PM that same night.
I be
