Losing my mom to HD

Sunday night, my mother died and her earthly existence ended. But I had lost her to HD years and years ago. She and everyone close to her were victims of her primary symptom: the ever-renewing anger loop. Only during the past couple of years did she take any medicine for HD. She refused until, somehow, doctors convinced her that she would feel better if she took medicine to slow her chorea and when she started taking that medicine, a lot of the anger went away.

Her anger, that is. I have spent years in therapy dealing with the hell that she put me through before I knew she had HD and started realizing that the problem wasn’t me. I have spent those same years trying to forgive her for hurting my family and other people I love because her behavior was caused by a disease.

Our disease.

Now, just my disease.

I have Facebook friends who have lost their moms to HD and they love and miss those moms. I wish that my mom was like theirs. I feel that way about my dad, who died of kidney disease, and was never abusive. I grieved when he died and I have an empty spot that he used to fill that I carry around now.

But with my mom, all I feel is relief. Disbelief that her dynasty of terror has ended. Part of me never expected it to happen. There is no longer a microcosm swirling around her demands or reacting to her use of the most hateful words she could spit out.

For her memorial service, we are putting together a presentation of the good in her, before the disease changed her. We have to go far back. I hope that being reminded that she was a healthy, kind person once, a person who did nice things, will help me in the forgiveness department.

Even more, I want to be happy for her. Happy that she is free from the disease. Happy that she is no longer out of control. Happy that she is at peace.

But someone asked me how I was feeling yesterday and before I could think of what I was supposed to say, I replied, “Fuller.”

And for now it’s true.


12 thoughts on “Losing my mom to HD

  1. Sis sis …… The truth is the truth is the truth is the truth.
    Sometimes it’s so difficult to separate the disease from the person … especially when the onset is so early and undetected/diagnosed for so long. A household filled with anger is a tough environment for a child. I’m grateful there are memories either with yourself or with others that can convey a different time in your mums life ….. yet sometimes it’s just so dang important to say the truth!
    I love you for that … and for so many more reasons …. luv your sister sister DK

    Liked by 2 people

  2. It is hard to forgive parents who were abusive. Ultimately, I got over it when I realized that they were doing the best with what they had. They just didn’t come as well equipped as other parents. Hope it may help you heal to think of her as a victim rather than a villain. Love you.

    Liked by 2 people

  3. I’ve spent a lot of energy trying to forgive my mother… for so many things. The HD took away my right to be angry, and for a while, I was angry about that too. In the end, I try to remember that she did HER best, but that doesn’t mean it was the best for me. I have just tried to get the ball further down the field, and hope each of my kids runs it further… somewhere down the line, we will be a healthy family.

    Your voice just keeps getting stronger and stronger, Sarah! Keep sharing, keep writing, keep inspiring so many of us! Sending you love and light. xox

    Liked by 2 people

  4. i was married to my husband for 60 years had 5 kids but i got to the point that i almost hated him and myself for feeling that way knowing that it was not him but HD i feel that my husband left me 10 years before he died

    Liked by 2 people

  5. I’m sorry Sarah….but I know how you feel. For me it was a father I never really knew. I felt no sadness when he passed. At least your Mother had a reason for her nastiness…he was just mean.

    Liked by 2 people

  6. Sorry Sarah about the loss of your mom. Well, it seems like I am not the only one with tough childhood. My parents were hot tempered and would quarrel. So far, my dad only slapped me once. But he had punishment like standing outside the house. My mom used canes most of the time. My brother was very michivious from young. He was usually the one being caned. When my mom was moody, she would want to drink beer. And she would quarrel with my dad as he told us no. Later she had schizophrenia when I was 14. Younger sister only 7. So course there was also relapses. That was all when we started to be have problem finicially. Later she passed away in 2005 due to HD. She had dementia and could not recognize us or talk to us. She passed away peacefully in her sleep. We are glad her suffering is over. I wish I could have known her. She is not a bad mom. She did bring us for swimming and borrowing books from the library. Maybe because she was given away when young and it had been tough. Yes she cooked wonderful Malaysia meals. They migrated to Singapore for us. But my siblings and me were born in Singapore. Now I am learning how to forgive him and ask for forgiveness. I bought a Bible study book talking about forgiveness. Of course I am not a perfect person. I need to learn to remember that forgiveness will definitely allow me to move on. Especially from my past though we still share a daughter. We are all here for you Sarah. I can understand and feel your suffering as a child. We all care and love you

    Liked by 1 person

      1. You’re vwelcome Sarah. Hope you have a wonderful Christmas. I will be taking of my HD brother for one day on the eve of Christmas. My dad needs to go to Malaysia. As such i can only cone back next year in January. Of course, my friends would not want me to go back to US. Will need to find a room for rent in Boston area. Have not been sleeping well. Think I am going to start involuntary movement soon. I also been wanting to visit Netherlands since my uncle’s family is there. I miss them. I love you ❤


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