Lupus SLE: Minor Caregiver

If you've read the "About Me" page you know I've been dealing with Chronic illnesses whether directly or indirectly from a young age. My mother was diagnosed with both Diabetes and Lupus SLE. One before and one after my birth.

Here is my take on being a caregiver at a young age. It SUCKS! My mother had me at 24 and by 27 she was diagnosed with both illnesses. So growing up I didn't know anything different than her taking shots or complaining of joint pain or having peeling skin. My mother was also a single parent, so after age 5, it was just me and her in the house.

Fast forward to ages 10-12, I'm attending doctors' appointments with my mother and listening to their recommendations. Some she followed, some she didn't. I tried to push the ones she didn't, but I'm a kid, and her favorite thing was "I"m Grown". So I would leave it alone until she would have episodes with one that would trigger the other. By age 13, my mother had lost most of the hair on her head due to her skin peeling there. The rest thinned from a combination of the two illnesses. And one of her arms peeled from her wrist to her elbow. It looked as if she was in a fire and these were the results.

I tried reminding her to wear long sleeve shirts since her skin was sensitive to the sun and would peel or itch worse, but again I'd get "I"m Grown" or "it's too hot for that mess". A few times I could guilt her into doing what was needed, but that didn't always work either. There were also times she knew she was in the wrong so she would hide the deeds from me so I wouldn't know or worry. I started massaging her legs whenever she was in pain from the neuropathy and didn't want to wear the compression socks or did, but they weren't much help. I rubbed lotion on her skin before and after an outing, especially one without long sleeves. I tried to keep track of doctor recommendations, medications, and visits. But again, I'm a kid this isn't supposed to be my job so, I wasn't always 100%.

The largest struggle was feeling unheard and that I could lose my mother if she didn't listen to me or the doctors. Also, feeling like I wasn't doing enough even though at any age I can only do so much if she didn't want to listen.

I did end up losing my mother at 15 due to a diabetic issue and renal failure. Looking back I know I did the best I could, but being a caretaker at a young age is stressful and hard.

Photo By Alex Green