A Guide for Family Caregivers of Loved Ones with Rare Diseases
I feel guilty because I get so tired and want a break for myself
My name is Pat, I am 43 years old and I am caring for my Uncle Arnold who is 51. He lives with me. He has Primary Angiitis of the CNS, the rarest form of vasculitis isolated to the brain. He has had two relapses after a long remission state. The relapses have done more damage to his brain. He has lost most short and long term memory, he gets very confused, his emotions have gone very flat. I don`t know if he is comfortable, or what he wants. I only hope I am doing everything right for him. He always just says "I`m Fine" no matter what, so I just do my very best for him, and pray it is enough. I am with him 24/7.
I feel guilty a lot because I get so tired and want a break for myself, but that seems so selfish to feel that way, when he needs me. It breaks my heart to see my uncle like this, and I can't fix it, there is so little known about this illness, and prognosis is unknown, so it is day by day. All I know to do is the best I can for him. I just hope he can feel how much he is loved, I hope he knows it somewhere deep inside. I do my best to let him know every day. Well that is my story, it helped just to tell it.