How I Handle Being a HIV Long-Term Survivor and a Long-Term Caregiver

For 30 years, I have been a caregiver to myself. I have managed doctors' appointments and treatment plans and built networks of support as a long-term survivor of HIV. But I have also taken care of others as well.

When I was 13 years old, my mother had the first of several strokes, and I was expected to help in her care. Being a teenager and having to feed, carry, and help her to the bathroom was one of the hardest things I have ever had to do, but if not for me, there was no one else to help her.

Decades later, my partner fell sick. He did not reveal his HIV status until a fungal infection turned every inch of skin on his body a deep shade of green. Of course, I had never asked. There was only one treatment, and many considered it a poison worse than the disease. We lived with our heads in the sand and the unspoken agreement that we would care for each other when the time came.

I cared for him until his last moments. I learned to give him injections and clean the port in his chest. I fed him, bathed him, and massaged every disappearing muscle in his legs when he no longer could walk on his own.

And recently, all of this came back into my life when my husband was diagnosed with stage 4 cancer. I wondered if I would ever be free of being a caregiver, and I realized the answer was no.

Advances in treatment and care for people living with HIV are taking leaps and bounds into the future. We live longer than ever; as we survive and thrive, more people may turn to us to care for them. How are we going to get through it?

How I have dealt with it

Long-term illness is a battle I always hope to win, but I know it is possible I won't. I also understand the importance of remembering that it is not about me. My mother had several debilitating strokes over the years, and I watched each time as my family begged her to hold on and keep fighting.

I saw this with friends in the 1980s who held on because their families feared facing the heart-wrenching loss. Accepting the potential outcome helps me make realistic decisions without giving up hope.

Build a network

I learned quickly that I cannot always be there. Having support is an integral part of the process. Finding and defining the personal and professional resources available was crucial in carrying out my responsibilities and commitments.

Another element in network building is knowledge. Many great sites and organizations offer information and resources for people dealing with medical issues. Be sure to use these and remember that no person is an island.

When my husband first learned of his cancer and before things became too difficult with his therapy, I began jotting down who I could call on and with whom they could help. Not waiting until the last minute when things were chaotic gave us comfort that we had a plan in hand.

Don't forget about myself

A key element in being a long-term caregiver is caring for yourself. This isn't just about finding quiet time or personal space. It is also caring for my health.

I made sure to keep up with any treatment plans I was on. Doctor’s appointments were attended. Exercise, nutrition, and essential downtime contributed to keeping my strength up so I could care for others.

Healing afterwards

After my role switched from caregiver to helping that person depart this life, I gave myself time to heal. I learned this by making a mistake when my partner passed away. I jumped back into life and pretended that everything was okay when it wasn't.

Eventually, when I did admit I needed help, I found that talking to a therapist helped me to pull any survivor's guilt out of my head and close the door to the pain I was feeling.

Then, I accepted that it was time to be selfish and focus on my goals again so I could move my life forward.

What I have to do now

Everything I have learned makes me keenly aware that I have responsibilities to the person providing my end-of-life care. Most importantly, I must make my wishes known. Having my paperwork taken care of and expressing how I want those moments to be handled will take a lot of worry and burden off the person who will handle this.

I also have planned what will happen with all the 'stuff' in my house. It is my job to make the end easy on those who will be with me.

I remember my mother, who was unable to speak in the end, and how we struggled to understand what she wanted because she would not share them with us when she was able to and was unable to speak at the very end. I hope not to repeat that mistake by making sure those around me hear my wishes clearly.