We all want to be unique, but not freaks. So I have to figure out something cutesy to say about me. I’m here writing my bio because I want to start a blog for caregivers. Caregivers who have things they would like to say and do, but really can’t. At least not without guilt and shame.
Full Definition of CAREGIVER
: a person who provides direct care (as for children, elderly people, or the chronically ill)
That seems like such a simple definition. Caregivers, you know how complicated and difficult it is. Often I find it to nuanced and hard to explain.
My name is Alice. My life partner and love of my life is I have been with my partner for 18 years, of which, the first four were healthy. Pepper has multiple sclerosis. I knew this when we got together, but her symptoms were very mild at that time. In my mind they were mild, I don’t speak for her, so I can only give my perspective. They got much worse years later.
As with any couple, there is a long history and the details will come out over time I’m sure, but just a couple things. I’m an American and she is Canadian. We lived in the U.S. for the first four years, then I immigrated to Canada when she was no longer able to live in the U.S. The process to immigrate took 3 years. We were living apart during that time. I had a job that took me across the U.S. to different locations each week. I would spend my time off divided between being with my 2 boys, and with her in Canada. I felt homeless for much of that time. During that three year process Pepper began to have some very odd things happen. She started having accidents driving (eyesight). Headaches, facial pain and dizziness. She lost all sense of taste for a time, when it returned it was distorted and nasty. She lost an amazing amount of weight.
I have been in a very depressed situation for some time. It ebb and flows, from less bad to worse, never good. Don’t get me wrong, I have good days! I have handled many aspects of my partners illness in the worst possible ways. MS is not a disease that gets better, only varing rates of progression. I withdrew from people, while accusing her of doing the same to me. I have watched her slowly get worse bit by bit. At times so slow that I often wonder “when did that start?” I’m terrible at asking for help. I will go without rather than reach out. I hate the idea of owing anybody anything, but I am realizing that that is what is needed. This is my attempt at that, not just to reach out for help, but to help hold up others who may also need it.