April 30, 2008
I want to share with you how difficult it is to depend on others for all of your needs. I am not able to meet any of my needs without assistance. What that means is that I depend on others to not only understand my needs, but to meet them. If it was so simple to find great people I wouldn’t be using this space to write about it.
I am so saddened by the many people who have left my life. I wanted to have friends just like everyone else. I think most people have friends who choose to stay in their life. I am not the only adult in need of appropriate care. We have lost count of the hundreds of women who have left our lives since I was young. I am too sad to keep track. If I kept track of the losses, I wouldn’t be open to the new women who come into my life. If I were too sad I would not be open.
Our family is grieving for the loss of my best friend who left for Idaho last week. It is so different without her here. I miss our chats, and being able to depend on her anticipating my needs. I am expected to trust new people immediately. They are not my Mom. They think it is natural to go into the bathroom with me and undress me, to assist me in the most intimate needs of my life. It is NOT natural. It is painfully humbling to have so much need. It is something most people do not experience unless they have a severe accident or medical condition.
I want to tell everyone that there are great people in the world who are kind, caring and capable, but there are also those in the caring role to get a paycheck. It is for them that I share this.
Your role in our lives is far too improtant to have you show up for the money you can earn. I am completely dependent on your goodness and thoughtfulness. I cannot speak to you, so you need to anticipate my needs. Rarely do you attempt to communicate with me. You do for me like you would for an animal. You can check off the list of many things to do, but you do not get to know me. It makes my day so long and full of grief for me. I don’t want to have you in my life.
For those of us who are silent it is especially hard to get good care. I am expected to be patient with every new person that comes my way. They can either help me become the best person I am or hold me back by their ignorance of who I am. I think most women who fit this category choose to not get too close. It’s something that makes it easier for them.
I wish for all of us in need of care, that the world would be kinder and that human goodness, tenderness and love would be the guiding principles. I am often told that I should go into a grouphome. There I would be cared for by staff who would never interact with my family who know me best of all. I would be expected to be in an environment that includes the high needs of other adults. That would be my life. I would be expected to be content with whoever shows up to care for me. The friends I would have are those chosen to live with me by the county. We have checked it out and determined that being home with family would be ideal, but it brings so many challenges into our home.
It is hard to be the person in need of care. I watch my family stuggle to meet my needs. It is not in my power to do for myself. Our lives are open to input and scrutiny by whoever we hire to work with us. I speak on behalf of thousands of us who live in each state in our country.