One of the things that has helped me this past week, is writing.
If you are fortunate enough to have great caregivers who you can count on no matter what, you are fortunate indeed. For those who have younger children in need of extra care, it is hard enough, but for those of us who have grown into adults and still require direct care in order to live and have meaningful lives, it becomes nearly impossible to find the care we deserve. Our bodies are big, and have adult needs. Our care is constant.
Many young girls with Rett have extended families and friends who are actively involved in their care. By the time I was 15, anyone who knew me and wanted to be involved in my care, had done so. They were no longer able, and in many cases, uninterested to care for me. My care frightens many people, not because it is so complex, but because they perceive it to be. As a result we rely on strangers. We ask lots of questions and do lots of training and have been so disappointed lately.
The person that walked away last week responded to an ad in our church advertisement paper. She could be very caring, but to have her walk away without indicating that there was an issue, or even saying goodbye, causes me to not trust people. Their words are sweet and smooth. They act so nice to me around my parents, but are often quiet and go about caring for me like they would the family dog when we are alone….feeding, toileting, minimal entertaining.
My Mom is exhausted. We now have two people who are gone. She of course will do her best to care for me. She cannot work at her job and be with me. It is forcing her to make a decision.
I speak on behalf of all my silent friends, when I say to caregivers: If you think this is a job you can do to earn some money, you need to check your hearts. If you are NOT caring, genuine, upbeat, reliable, honest, ethical, able to communicate problems as they arise, able to realize what families give up when they bring you into their home, then STAY AWAY. Work at a shelter and take care of pets, and find out who you are. Don’t pretend to take care of humans!!! We have needs for companionship and intelligent conversation and accountability. Stay away unless that is who you really are.
We are hurt more by your actions than by all the struggles we face as individuals living with involved disabilities. Our lives are open before you and we deserve honor. Our families deserve respect. We have a difficult path here on earth. We need real, genuine and caring people to be in our lives.
And again I pray, please come quickly.
P.S. I have some wonderful women who have been with me for a long time, even some new ones who help out on the weekends, that I love and respect. We are very grateful for them. We couldn’t do life without them.