Every morning I get up and start the ritual of getting myself out the door. It is the same routine regardless of plans for the day. It doesn’t matter if I am going to work or to visit my mom at the hospital, I still need to shower and brush my teeth and my hair, if I remember. I guess the only part of my routine that is affected by the day’s plans is my shoe choice, I am quite certain you cover a few city blocks traveling from the parking garage at HUP to my mom’s room in the Rhoads building. I use to get up at 5 each morning and take some time to have a coffee before I showered and got ready for the day, it was the perfect amount of “me” time to start your day. Lately, the snooze button on my alarm has been getting quite a workout. I apologize to my husband because he has to listen to it until I decide to drag myself out of bed, but he just shrugs it off and says he knows how exhausted I must be. I don’t bother to tell him that it is not exhaustion that leads my snooze button addiction but the realization that “me” time is just not for me anymore.
My mornings are now jammed into half the time I need to get ready which causes me to rush to accomplish simple tasks like brushing my hair. I usually leave the house without breakfast or even that desperately needed cup of coffee. I can shower in 2 minutes and use about 8 minutes to brush my teeth and hair, put in my contact lenses and get dressed and I am still aware of the fact that I have too much time to think during this process. Thinking is not something I want to do right now, it usually leads to clutching the edge of the vanity to stop myself from going over that edge or vomit in the sink because some thoughts cannot be handled, even by your stomach. I have been told that this is not normal but at this point I have a real issue with what other people think about normal.
I am extremely angry at the progression of this disease. My mom cannot speak to me at all yet she understands everything that is said to her. I cannot imagine the frustration she feels being trapped and alone in her own mind, but I am forced to see it every day when I walk into her hospital room. She now has a feeding tube, at times a catheter and you realize how scary things have become when you start to count the IV lines running into her right arm. It always amazing me that I find all of these things just part of my daily life and they don’t knock the wind out of me on a regular basis. I have always been very aware of the effects of PML and I admit that it is much easier to read than to watch. I still don’t believe in my heart that this horrible disease will beat my mom and anyone who believes it will just really doesn’t know her. I have an extreme dislike for the resident attending who stood at the foot of my mom’s hospital bed and tried to explain to Dana and I that a do not resuscitate order would be in my mom’s best interest. Dana and I did not agree with her and gave her the option of leaving through the door of room 7006 or the window.
My mom is a fighter, stubborn to the core and I am counting on that to carry her through this nightmare. As I watch the way my mom’s condition affects those around her I realize just how much she is loved. My cousin Helen spends a few hours of each day at the hospital just to be near my mom. It brought me to my emotional edge when I watched my mom reach her hand out and Helen took it in her own and said “You have to get better Bonnie because I love you.” My mom and Helen are close and I know they love each other very much; it is just not something they say to one another on a daily basis. Before Helen’s mom passed away my mom stood by her bedside and promised her that she would always take care of Helen. I know that her love for Helen and the promise she made to her mom keep my mom fighting. My stepfather will not leave my mom’s bedside and does not allow anyone to discuss the possibility of losing my mom. I know most people think we are all living in denial of this disease and what it does but I know that our family simply chooses to live on the hopeful side—we owe my mom at least that much.
My mom is an amazing woman and is always there when you need her. All my life she has defended my choices and made sure I knew she was proud to introduce me as her daughter. I know in my heart that I would not be the person I am today without her influence.
My mornings are now jammed into half the time I need to get ready which causes me to rush to accomplish simple tasks like brushing my hair. I usually leave the house without breakfast or even that desperately needed cup of coffee. I can shower in 2 minutes and use about 8 minutes to brush my teeth and hair, put in my contact lenses and get dressed and I am still aware of the fact that I have too much time to think during this process. Thinking is not something I want to do right now, it usually leads to clutching the edge of the vanity to stop myself from going over that edge or vomit in the sink because some thoughts cannot be handled, even by your stomach. I have been told that this is not normal but at this point I have a real issue with what other people think about normal.
I am extremely angry at the progression of this disease. My mom cannot speak to me at all yet she understands everything that is said to her. I cannot imagine the frustration she feels being trapped and alone in her own mind, but I am forced to see it every day when I walk into her hospital room. She now has a feeding tube, at times a catheter and you realize how scary things have become when you start to count the IV lines running into her right arm. It always amazing me that I find all of these things just part of my daily life and they don’t knock the wind out of me on a regular basis. I have always been very aware of the effects of PML and I admit that it is much easier to read than to watch. I still don’t believe in my heart that this horrible disease will beat my mom and anyone who believes it will just really doesn’t know her. I have an extreme dislike for the resident attending who stood at the foot of my mom’s hospital bed and tried to explain to Dana and I that a do not resuscitate order would be in my mom’s best interest. Dana and I did not agree with her and gave her the option of leaving through the door of room 7006 or the window.
My mom is a fighter, stubborn to the core and I am counting on that to carry her through this nightmare. As I watch the way my mom’s condition affects those around her I realize just how much she is loved. My cousin Helen spends a few hours of each day at the hospital just to be near my mom. It brought me to my emotional edge when I watched my mom reach her hand out and Helen took it in her own and said “You have to get better Bonnie because I love you.” My mom and Helen are close and I know they love each other very much; it is just not something they say to one another on a daily basis. Before Helen’s mom passed away my mom stood by her bedside and promised her that she would always take care of Helen. I know that her love for Helen and the promise she made to her mom keep my mom fighting. My stepfather will not leave my mom’s bedside and does not allow anyone to discuss the possibility of losing my mom. I know most people think we are all living in denial of this disease and what it does but I know that our family simply chooses to live on the hopeful side—we owe my mom at least that much.
My mom is an amazing woman and is always there when you need her. All my life she has defended my choices and made sure I knew she was proud to introduce me as her daughter. I know in my heart that I would not be the person I am today without her influence.
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