Caregiver Corner- Ellen K.

My parents and I have one HPP gene. My younger sister has two HPP mutations. With her in a wheelchair and being short I do most of the cooking for everyone. Parents who were considered carriers when they were younger turned out to have lots of HPP issues after they retired. So we all moved into one house along with my husband to make care-giving easier for all of us. Having to drive to them when they needed help wasn’t logical anymore especially when fractures and surgeries were required. My father passed away last year after falling and breaking his leg at the age of 92. My mother is 94 yrs old and currently has a compression fracture in her spine from just twisting getting out of bed. My sister is pretty self sufficient but limited due to her HPP and spinal deformity. I, as the main and strong caregiver, also have bone pain and joint degeneration that will be needing a knee replacement soon, as I can figure out how to have time for my rehab. The most challenging part is fitting in everyone’s medical appointments and mine while I am still working. Especially on the days when I am  dealing with my own bone pain and joint degeneration and can hardly muster the energy to keep moving after a 10 hour work day. I am very strong willed but when I am having a hard time keeping up, I can always rely on my husband who is willing to help around the house and to be the taxi driver to daytime appointments. My self care time is spent playing word puzzles on the computer and watching at least one movie with popcorn weekly that makes me laugh. 

The most rewarding aspect of being caregiver is seeing everyone leading as normal of a life as they can.