You know, I never feared for my mother’s life growing up. Huntington’s Disease is such a tease, such a game. The person starts out “normal,” and the progressively declines. In my mom, HD was slow in the beginning. She walked for fifteen years, not saying of those fifteen years she had no difficulties; because trust me there were many falls, trips, bumps and bruises. But with HD it’s like once you enter the last stage, (there are supposedly five including death) everything progresses so quickly, literally in the blink of an eye.
My mom has been in the last stage for a long time now. Once you’re there, there’s no turning back. At this point, you could compare my mom’s speech to that of an extremely intoxicated person. Her words are becoming more and more unintelligible. to understand what she is saying we have to ask her to repeat herself or ask her to spell out the main word of the sentence. She has completely lost the ability to walk, and hold herself up. She has been under Hospice Care since February 2015. Her starting weight was 115 pounds. Today, she stands at a mere 99 pounds. My mom does not eat or drink, despite the fact that cooking and eating were among her favorite things to do when she was able to. She has to take about twenty pills a day. Pills for her chorea, depression, anxiety, pain and some for the stomach pain she has been experiencing.
If you saw her fifteen years ago and looked at her now, you would not see the same person. The positivity and humor in her personality is still there, but a part of her is just gone. It is really sad to watch and the only people who will ever be able to understand are the people who have gone through this already. Today, my sister and I sat with the nurse from Hospice, telling her any new information on my mom’s health. I don’t know how much these nurses care about their other patients but I know my mom’s nurse was very concerned and cares a lot for my mom. Everything medicine order is urgent when it comes to my mom because they want to see her better. My mom’s swallowing is diminishing. My dad wants her to go to the hospital to get the Barium Swallow Test. With this test my mom would swallow barium and then get an x-ray since barium can be seen through x-ray. The doctors would then assess any problems, because with a decline in swallowing, the stomach and esophagus can begin to hurt and be irritated. This test is thousands of dollar, money we do not have. One must realize that this disease sucks the life out of your loved one while sucking money out of your pocket.
Today, is the first day I have ever feared for my mother’s life. She is as thin as a twig. The width of her arm has gone down from twenty-one inches to seventeen inches. The width of her legs went down one inch, and she lost ten pounds. She stares into space and when you ask what she is looking at she always will say the sky. All that is in front of her is a television, not a window. It is so scary to experience her go through all these changes. Today, my mom laid down in her chair like always, but what I saw was not what I had seen before. Her face was white, she had one eye open, one eye closed, and her jaw dropped. She wasn’t even moving. To be completely and brutally honest it looked like she had died right in front of my eyes. I went up to her and told her that she looked tired and that she should nap, and she responded saying that she wasn’t tired. Honestly, I was happy enough just to get an answer from her. It was at that moment that I just had to walk away.
Everyone always criticizes me on living in New York. What those people who think I’m wrong do not understand is that I have my reasoning and I firmly stand with my decision. Sure, I miss out on a lot and I should be spending every waking moment with my mother because one day she won’t be here. But I cannot physically or mentally take watching my mom wither away. To deal with the future, i need MY mental health to be top-notch and to achieve a sen-top notch mental state, I need to be away from my mom. Now, some of you still may not understand but I know it is what is best for me. I have so much respect for my dad and sister because they have no choice but to watch my mom slowly decline. They are stronger than I am, but I know I am strong in my own ways. I have to focus on myself because I devote every second to my mom and my family and I know I need to think about myself sometimes too.
So, in closing, we will fight this disease with a smile on our faces and our chins up, hoping for the best.Thank you to all who have supported me, thank you to those who have donated, thank you to those who love me, love my mom, love my family and thank you to those of you that read this.
If you have a dollar to spare, please donate it to my Huntington’s Disease Team, I will link it. Also, for anyone that is in the Long Island, New York area, there will be an HD Walk on September 13th at 9am at Belmont Lake State Park! I’d love a big turn out!