Tag Archives: caregiver

A Mother’s Love: Living with HIV and Caregiving

Inspiring Stories, Lessons Learned, Support,

My daughter had graduated from high school and was preparing to become a nurse, when she suffered a stroke from complications of sickle cell anemia.

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.

– Punkin

Different Faces of a Caregiver

Advocacy, Support, Taking a Stand,

The definition, according to Merriam Webster, for a caregiver is, “a person who provides direct care (for children, elderly people, or the chronically ill).” Another dictionary defines it as, “a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.” I define it as someone who shows love, compassion, and empathy for anyone who is in need and it is within their power to help.There are three different faces of caregiving that I can identify with and would like to describe briefly.

Caregiver Wife. As a wife, I promised to love and support my husband through the good and the bad. I promised to be there in sickness and in health. When I found out that I was HIV positive, (before my husband received his diagnosis) I was devastated. However, I had to tell myself I was still alive and it was not a death sentence. I was fortunate, yet unfortunate enough, to have had previous family members who had the AIDS diagnosis. Therefore, I was able to see the good and bad of the virus before it affected me personally. After we found out my husband’s diagnosis, I went into caregiver mode.

I honestly believe that I was more concerned about him being healthy than myself, mainly because he had to start medication a lot sooner than I had to. I made sure we began to eat better, we both stopped drinking and he stopped smoking. We did everything we were told and instructed to do by our doctor, in order to make sure we did not end up dying prematurely, like my family members. After sixteen years, I still make sure we take our meds at the same time in order to continue that bond of care because we are in both our marriage and this fight together.

Caregiver Mother. As a mother who is HIV positive, I make sure I am constantly talking to and engaging with my own children, as well as their friends who have grown up with them, whom I consider bonus children. I am always talking to them about safer sexual interactions. I explain to them the dangers out in the world that they cannot see with their eyes. And I share with them, as often as possible, about the cost that comes with making bad decisions, if they choose to be reckless. When my boys were minors, I had them tested for every STD and virus known, and I encourage them to continue to do the same now that they are adults.

Caregiver Friend. Having someone you can call a friend for years is a great thing. But having to share with that friend a secret that you are ashamed of is very scary. You are afraid of how they will react because sometimes you can count on them more than you can count on your own family members and you don’t want to ruin the friendship. It is heartbreaking when you learn that those friends, who you have known and loved for years, have been hiding that same shameful secret that you have been hiding for years. And, when you are confronted with that truth, you are then saddened because you think of how you could have helped each other deal with it together but instead, because of the shame, you suffered in silence.

As a caregiver friend, I decided to create an atmosphere of support for my friends who are positive (living with HIV), as well as for their spouses, because we have to keep the family unit strong. When I began to attend a support group for positive women, I felt the disconnect from my husband. I decided to talk to the other women about how they were coping at home with their husbands. I wanted to know what type of support their husbands were getting, if any, aside from what they were providing. I started to see that again, we had the same problem. I then decided to organize a support group that would support the unity and bond of couples. We began meeting once a month which changed to twice a month. Then, that changed to celebrating birthdays, wedding anniversaries, and vacationing together. The only thing that has kept the group from growing and flourishing is COVID-19. Needless to say, I am planning an event as soon as I can, one that would be safe for all in attendance.

Being a caregiver comes naturally for some, others have to go to school in order to learn how to become a caregiver, and then they are paid to do so. I prefer to be the first type of caregiver. I truly believe this gift was instilled in me as a child from my grandmother, my mother, and my aunts. I love to help others striving to be successful. I love to help others make a difference in their own lives for the better. I think I will continue to enjoy my three different faces and aspects of caregiving, and would not change it for the world. In the beginning, the diagnosis I received was devastating. After many years, I see it has been a blessing. I have been living a positive life since being “positive.”

– Nickie