I know I have brought it up a few times before, how my mother having this awful disease has brought me up and taken me down many, many times. This entry is to explain and talk more about how HD affected me growing up and how it affects me now.
Many societies would agree that women are caring and nurturing beings while men are the aggressive and tough beings. With my mom having HD, I believe I have become more caring, more nurturing, AND I have stolen the “men’s” toughness. Sometimes I give myself a lot of credit for what I have gone through and continue to go through. That in no way means that I think I have it “the worst.” I just sometimes wonder to myself, “how in the world did you overcome all this HD stuff and not breakdown?” There is a simple answer to that: MY FAMILY MADE ME STRONG.
One secret about myself that not many people know is that I slept in the same room, in the same bed, as my mom up until I was probably sixteen years old. When I was really little it started out as just being afraid of the dark, and monsters. Then getting a little older it was being afraid of robbers and kidnappers. It eventually worked its way up to being afraid of something or someone hurting my mom. I felt as a kid that I needed to be my mom’s protector. Her symptoms were not even that bad when I started feeling this way which is crazy. I just thought in my little mind, that I would be able to save her, to protect her from robbers or anything. From age seventeen and on, the fear became more of will my mom wake up from her sleep tomorrow. Such a sad thought to have in your head, but it was far from an unrealistic thought.
I have realized that all the worries I hear from other people, whether that be friends or overhearing strangers talking, are just things that are not meant to be worried about. So that guy/girl you have a crush on doesn’t like you back, you got a D or even an F on a test, you’re in a small argument with a friend…none of it matters MORE than your mental/physical health or your FAMILY’S mental/physical health. Sure you can care about those things but there are more important things in life.
New information about my situation right now. Times are tough, really tough when it comes to money and breakdowns. Now, I may not be the one experiencing breakdowns but my dad is. It is really hard for him right now with money and dealing with this last stage of HD. One must realize that through twenty-five years of marriage, sixteen of those years were caregiving. My dad is in desperate need of some relaxation and time to himself to recuperate. Under Hospice, my mom is going to stay at a facility called Respite Care. They are going to take her for five days and she will have her own room with a tv. She will be allowed visits, even from my dogs! She will be watched, fed, and taken care of. She is allowed to go on this “vacation” every 3-6 months, should we choose to send her there for 5 days. It is kind of sad to me that it has come to the point where she is just too much to handle, but I am so happy and excited for both my dad and my sister to have this 5 day break. I hope that it does a lot for their bodies and spirits and gives them a life without HD even just for a short time. IT IS ONLY TEMPORARY and that is all that matters right now because it is not a long-term care for her, just a well needed vacation for them all! September 23rd, was her first day in Respite care. My sister went to visit her with a coffee coolatta (her favorite) and my mom had the biggest smile on her face. Her room is HUGE, with a bed, recliner chair, and huge couch, she is livin’ large! I am just glad that she is happy and likes all the nurses and people there. Big relief.
Being the daughter of someone with HD is not in any way, shape, or form, easy. But is something I would do all over again if given the chance. Because at the end of the day, my mom’s true personality shines through when she flashes that smile of hers and laughs at every word you say. Although I may not live with her, I know that each day she wakes up smiling and each night she goes to bed happy. This woman has formed me into the woman I am today. With major, major help from my dad. Without that man’s strength, I would not have been able to get through the hardships of not only this disease but LIFE itself. Both of my parents have just done it all for me, more than they even know. They have helped me even by not doing a thing, just by being them. So yes my life is filled with worries, but I wouldn’t trade this life for the world, and that’s what it is like to be the daughter of someone with HD
Thank you for reading! 🙂