People apparently like to stare. I don’t know why. I don’t know what inside of a person makes them want to stare but they do. They tend to stare specifically at my family and how we move Mom around. I would love to say this doesn’t bother me but it does. It especially bothers me more when it is happening at a family gathering or a party with friends. Why do people stare?
As a child I can remember distinctly Mom telling Sister K and me the phrase “Don’t stare.” She would say this when we would see someone who might have some sort of disability or may be different from us. She would say this because as children our instinct is to stare. It was one of what I would call Mom’s cardinal rules. I figured everyone knew this rule. Naively I especially figured adults knew this rule, but I am finding out they don’t.
We were at a family birthday party this past summer and everyone was lining up for a family picture. We were the last to get situated. The rest of our extended family seemed to move rather quickly to get in place. Then they just stood there and stared as Mom moved slowly with her walker and we followed around across the living room floor. Later that night when we had said good-bye in front of the house they just stood there again. Stood there and stared as Mom walked slowly to the car. Stared as we got her into the car. They didn’t speak. They just stared.
Similar things happen at parties we go to. There is a lot to maneuver and manage quickly without trying to draw attention to us. All while keeping a calm happy look on our face. It’s tough. We wait for the right moment when no one seems to be looking, then we move Mom from her wheelchair to a chair at the table. We shift her legs. Sometimes we literally move them. Sometimes we literally have to bend them. We help her stand. We help her balance. Then we do it again at the end. Even if she stays in her wheelchair there is always getting her into the car. The bottom line is there is always something. At the same time there seems to always be someone staring.
A word to society: Stop staring. As a family we are under enough internal stress in these situations ourselves and it would be helpful if you would just leave us alone and continue on as if nothing different is happening. Continue on in whatever else is happening and stop staring at us. How would you feel if you were in our shoes and we were staring at you? I am curious what people would say if I asked them that question. Maybe I should start.
Do you have any experience with people staring in difficult situations? Do you think there is a reason people do this? Were you ever taught not to stare? Do you think I could just be more sensitive to this and need to get over it?
I can’t put into words the love and respect I feel for my Dad. I believe deep down he is the reason our family is surviving Mom’s battle with MS. I have watched and continue to watch a transition as my father has become a caretaker. It brings back unsettling memories because I just watched my Grandpa go throught he same thing with my Grandmother as she battled Alzheimer’s. I watched as he became a caregiver to her and feel now I am watching Dad go through the same transition. And it is hard to watch.
Since this transition began I have felt my mind sharpened to the reality of marriage. My family is not large and up until I got married these two men, were the biggest male influences in my life. They still continue to be large influences as well. As I got married in 2010 and said my marriage vows, they really meant something very personal to me because I felt I was watchingthe tough parts of those vows lived out everyday. I understood the meanings behind the powerful words “for better of worse, in sickness and in health.” I understood the meaning of a committment and what it can mean through the tough times.
But I struggle with Dad’s transition in becoming a caretaker. He basically is one but I prefer to believe he is transitioning because it is difficult to think of Dad and Mom’s relationship that way. It is something I never gave much thought and if I did think about it, they were thoughts that this would not occur for many years from now. I also struggle because this level of responsibility and constant caretaking can take a toll on anyone. Dad will talk to me sometimes about what is going on and I don’t know what to say. I don’t know how to offer support. What I want to do is pack up and move back home. I want to find a way to be there for my parents all the time. I want to help him with Mom, be an extra set of hands for him and just provide extra help. But this hasn’t been in the cards for me up until this point and I don’t think it is.
So what can I do. I feel helpless again. I continue to feel helpless. I feel helpless because the best way to offer assistance in this situation is to be there. I also feel helpless because there is no way for me to be there except for brief visits home on the weekends. In the past year my husband began graduate school for his MBA so we moved about an hour and a half away closer to my hometown. We were 4 hours away before. This was a step. But without physically being there, how do you offer assistance. How do you help someone who is doing everything and you are doing nothing. And he does it all- he takes care of Mom full-time day/night and works full-time. He balances both of those responsibilities and he never complains. So I complain for him because I know he must be exhausted. I know he must struggle. How does he do it I wonder. How.
I think it’s love that makes him do it. It’s love that keeps him going, keeps him supporting Mom. Love is powerful but is it enough? I still struggle with how I can help him. How can I be there for him. Going home more weekends, calling to give him a sounding board to talk to, reassuring him that what he is doing is so important and we are all here for him. The struggle continues and it’s something I think I will struggle with for a long time. But it’s a struggle because of the love I have for my family. It’s a struggle because I want to be there for them as much as possible. So while it is a struggle, it is a struggle worth having and one I should feel fortunate to feel at all.