When my daughter first came home from the hospital, it was very rough on me because I didn’t get the proper rest that I needed. In the beginning, I did not have any help and I realized that to make it easy for me, I had to have a plan.
I managed my time by having a calendar and writing down things I had to do throughout the day. For example, having a schedule for what time I had to do things for myself and her, including both of us taking our meds. I started my day at 6:30am. I would get up, take my shower, and get myself ready. By 8:00am, I needed to have these things done because, from that time on, my focus was on my daughter. She needed to have her breakfast, medication, and bath, and then I had to make sure her room was clean and that lunch was prepared. I had to be up throughout the night and all day—and just be on top of life itself. I thank the Lord that my daughter had Medicaid so that I was finally able to get home healthcare for her, which gave me a little relief. They helped out with bathing her and things like that.
What advice would you give to caregivers?
Know the individual. With her being my daughter, I knew what her likes and dislikes were, I knew what would trigger her. I’ve been there through the ups and downs with her, trying to take care of myself as well.
You know, living with the virus that I’m living with, I don’t advise anybody to do what I did. I would be on my meds, then off my meds, and not eating properly. I thought that it was all about her. I felt like I had lived my life and I wanted her to have the best life that she could have, dealing with the stroke that she had. So yes, I don’t advise anybody to do what I did.
I was focused. I did everything that I had to do, but when I would take my meds, it would make me so sick that I was not able to take care of my daughter. I felt like, “Hey, I do not need these meds. I need to be focusing on her.” So, that is the reason why I got off my medication. I just thank God that my HIV health status had not become worse, reducing the number of my T-cells and reducing my immune system, creating an AIDS diagnosis.
It has been over two years since my daughter passed away, and I am thankful that I am in good health. My advice to caregivers is to take their meds, make sure to get the proper rest, eat right and stay up on their doctor’s appointments. If they need to go and talk to someone about their mental health, go and do it. There is nothing wrong with you getting that assistance. But, with me at that time, I felt like I didn’t need to get mental health counseling. I felt like, “I can do this, I don’t need their service.” But, as the years went by, I started saying, “Hey gal, you really need to reach out to somebody else, you need this help.”
Another suggestion would be to join a support group that allows you to talk to other people that have been down the same road. They can give you good pointers and you can share your experiences. It’s also good to have a support system. My support system was not my family. I had to go outside of the box. I had to go to my sisterhood, support, and advocacy group of women living with HIV. And once I went to them and began to tell them what I was going through, they comforted me. They were there for me, they came and asked if there was something they could do and reminded me that they would be there for me.
Throughout the care of my daughter, I felt stigma, even from my doctors, that those of us living with HIV, are physically limited, that we are not going to live long, and that the meds that we are taking are going to take a toll on us. However, I am still standing and I am strong, thanks to all of the support.