Between my involuntary vacation and the snow and ice days I have spent a lot of time with my mom in the past few months. And it is call becoming much more clear to me that I need to start preparing for the inevitable...
My mother has Multiple Sclerosis. This shouldn't come as a shock to most of you. She was diagnosed when I was in middle school so you know that was a LONG time ago (but not too long lol). Anyway, since she was diagnosed I have witnessed the gradual progression of the disease. For my mother, her first symptoms were weakness in one half of the body. Today the manifestation of the disease has affected everything from the way she walks, to her daily bodily function, her personality, and her memory. In fact of all those, who memory is probably the worst. It is probably her lack of memory that hurts the most.
Her neurologist, who I love dearly, once told me that in 10% of MS patients that their biggest problem is cognitive functioning. In my mom this is true. For years my mom has not been able to hold down a job. Her writing skills have diminished. She doesn't really have an attention span to sit and read for long periods of time. In fact, doing anything besides watching tv is hard for her. She has to be given very simple instructions over and over again. Many times writing things down for her is the best way for her to remember. Now I have noticed that she has trouble remembering certain words and her speech is regressing.
Long term, short term memories they are all pretty much a blur to her at this point. She has asked me which high school she went to and what her wedding date was. She doesn't remember much of my childhood much less her own. She can barely even remember what she had for breakfast.
It is hard for me. It is hard trying to be four steps of anticipating someone else's needs. It is hard to hold the memories for two people. I sometimes find myself getting nervous with my own memory issues. I worry that the few times I miss and exit are a sign that I too might have MS. I mean what would happen if I no longer can take care of my mom, who would take care of her? Of me?
So I know I need to prepare. I know I need to get used to the idea that my mom is going to keep getting worse. Part of it is just mental. As the days go by my mother is more dependent on me. She seeks me as her financial adviser, her friend, her girlfriend, her companion and sometimes all of that is too much for me to handle. Sometimes I just wish that I was a daughter and she was a mother.
Sometimes I feel guilty for feeling this way. My mother is a wonderful woman. MS has made her such a sweet lady (before that I can't say the same). She is very caring of others. She can be funny, even when she doesn't mean to be. She can be a little feisty as well. I love my mom and she did so much for her. And I feel guilty that I am not providing the best of care for her. I feel ashamed that I lose my patience. I am sad when I don't have more understanding.
I know I need to physically prepare as well. Right now I am living with family. What am I going to do when I move out and it is just myself and her? What am I going to do when I am at the point when I can't take care of her on my own? All of these thoughts are running through my mind when I don't even have a steady job myself. Sometimes I am worried about her needs when my own life at times feels as if it is in shambles.
I am scared. I am nervous. I am frustrated. I am exhausted. But having all those feelings, experiencing my anxieties is natural. Venting is ok. But in the end she is still my mom, the woman who raised me. She is still my responsibility. One way or another, I am going to have to find a way to make it work, for her, and for me.
***For more information on Multiple Sclerosis please click here.