There are good days and very bad days when you care for someone with HD.
Today was a very challenging day with mom. Everyday is a different challenge with her.
Today, once again, my mom who can not care for herself anymore decided she wanted to move out of my home. The first thing that came out of her mouth today, was ” I am moving out. I already spoke to a sister from church. I am leaving.” Why is she so upset? A simple change in sleeping arrangements in our home. This is for her own, well-being, but mom does not see it that way. Mom can not go up and down the stairs anymore. She struggles daily. Yet, she decides she wants to move out whenever things do not go her way.
We had a nice Murphy bed built in my downstairs office for her. This would be easier for her, but she could care less about it. Today she threw a tantrum. Yes, at 59 years old, she has tantrums. She does not know what is best for her. Many times I feel like I am walking on egg shells with her. Will she be happy, sad, depressed, or what will it be today? With HD, things are so unpredictable. Over the last five years, my mother has gotten worse. One day she is happy, other days she is not. She has turned into a child in many ways. My mom is slowly teaching me more compassion and more and more patience. She has tested me so much in the last couple of years. In her mind, mom thinks she can still drive. She is in pain daily. In pain of some sort. This year I started her on CBD oils. This has been super helpful. She is currently taking a few meds, but this is by far working with her. Prayer has gotten me through days like this.
My life has not been easy, but whose life has? Getting married off by my mother as a newly turned 14 year-old my life was bound to change. Being a teen mom and living in some of the worst conditions growing up did not give me the best odds for success. But here I am. Through many challenges and struggles I achieved a level of success I never imagined. With back to back challenges I found faith. I also found the courage to fight hard. Fight towards survival of a better life. I survived and I was able to overcome some of the worst things imaginable.
I saw was able to see the light at the end of the tunnel and much happiness and peace was found.
But now I am faced with yet another unexpected, life altering challenge. This I consider one of the toughest and hardest difficulties I have had to encounter thus far.
Something I did not ask for, nor something I planed for. I am now facing a deadly disease that now haunts my family, Huntington’s disease. “It has been called the cruelest disease known to man.” I would have to agree. Seeing the day to day struggles of this disease has been heartbreaking. Seeing my mother deteriorate before my eyes is painful. Now seeing my older sister has the same fate has troubled me. But I have HOPE. Hope for a cure. Hope for a better tomorrow. Hope that I can be a voice for my mother, my sisters and all those affected by this horrific disease.
I hope to share my life story. The battles I have to face day in and day out with this awful, deadly disease. With hope, I fight in faith, follow my story…