My HIV positive uncle came to live my mother and two brothers in 2007. He moved in after my grandmother, my dad’s mom, moved in to be taken care of by my youngest brother who is a PCA (Personal Care Attendant) to my older brother who is mentally challenged. After years of not seeing either one, my father and mother had separated over 15 years before, it was quite the adjustment for everyone. My uncle showed up sickly, malnourished and emotionally distraught from years of loneliness and solitude. He was slowly going into full blown AIDS. Then things started looking up.
My Role as Caregiver
My brother handled my uncle’s care on a daily basis. He helped him with his medicinal “cocktail” of dozens of pills, along with insulin and blood draws for his diabetes. He got him special shoes and oils to reduce the pain in his feet caused by years of not taking care of his diabetes. Him and my mother cooked special meals and slowly my uncle started to regain his health. His blood counts looked better than ever and the doctor’s were pleasantly surprised at the turn around. My part in all of it was more of an additional person that he could turn to no matter what. I’d drive him to his doctor’s appointments so my brother an mother could stay back and take care of everyone at home. We found a support group in the city that my uncle started attending twice a week and made real friends at. I helped secure free bus passes for him and took him shopping when he didn’t feel like hopping on one. More than his niece, I started counting myself as one of his best friends.
Never Saw It Coming
He was doing so well and then all of a sudden started deteriorating again. The doctor’s didn’t know why. My uncle started buckling under the emotional strain of dealing with HIV and the real fear that soon he would be really sick with AIDS. He didn’t want to live at my brother’s house anymore. His support group found a group home that was a good fit. So among tears, we packed up his books and his clown collection and moved him downtown. He said how he’d be among people that really understood. The staff at the house was amazing. They told us that sometimes this happens and it was no reflection on our care or our love for him. His mind was deteriorating along with his body. Even there, he would take his sleeping pills and then make a pot of coffee. He’d take more pills because the caffeine would keep him awake. After moving in there, his care became more of of a twenty-four hour a day job. Even though everyone missed him terribly, once a week he’d come by bus to watch a game or movie with us and I’d drive him back home. Then he stopped coming.
You Hurt the Ones You Love the Most
My uncle passed away from complications with AIDS on Mother’s Day 2008. We had not seen him in over a month and he kept refusing our calls or visits. We’ll never know if we did do something, or didn’t do enough. The staff continually reassured us that sometimes the end is like this and it wasn’t our fault. He had already been in the hospital for two weeks. We all got to hug him, kiss him and tell him goodbye but we’ll never know if he heard us as he was already in a coma by the time that we found out. He had been in contact with his brother’s again during the time he wasn’t seeing us so at least he was not alone. My honest thought is that he had been hurt so much over his lifetime, ostracized and uncared for that when his mind could not deal with reality anymore, he could not deal with us hovering around either. Whether it was fear that we would turn out like all the others, or protecting us from having to deal with his pain, my uncle chose to not have us by his side when he needed us the most.
After taking care of a person with AIDS at home, I offer one piece of advice to everyone. Remember that,especially at this stage, nothing is about you anymore. The one solace I have is that I kept calling and going to see him. He died knowing that my mother, my brothers and I never gave up on him.