Huntington’s Community Talks About Grief

Huntington’s Community Talks About Grief

The recent series, “The Grief of Huntington’s Disease,” published in Help 4 HD’s The Huntington’s Post,  an outpouring of response from the Huntington’s disease/Juvenile Huntington’s disease community. We’d like to share those responses with everyone. This is the first.

My grief began previous to my mother’s diagnosis and continues long after her death in 2011. It began the day she forgot to pick me up from town, and she never returned home that night. We searched for her for hours upon hours, the entire family frantic with worry. She arrived the next morning, walking up our driveway in the middle of the country, with no recollection of her whereabouts the previous day.

From that day, I knew I couldn’t count on my mother’s mental state anymore, and from that day I mourned the safety net my mother once provided me.

My grief is ever changing and spans across many family members. When my mom was first diagnosed, I grieved greatly for my father who took care of her on a daily basis–he fell into a great depression. I felt guilty for pursuing my own life and dreams, all the while leaving my parents alone in the background to deal with this hell. My dad passed of a broken heart in 2005, and when it became my turn as primary caregiver to my mother, I grieved for my lost freedom. No longer did I have the opportunity to pursue my life; I put everything on hold to take care of her.

This was the hardest part of the grief, watching a mother of four beautiful girls deteriorate before my very eyes–the gradual loss of a parent whom you loved and depended upon. The loss of the parent-child relationship, the role reversal, was hard. Each day brought a new level of loss: loss of her memory, of her emotional control, of the ability to walk, talk, shower, and eat alone. Finally, I had to deal with the grief of losing her physical body; this was the easiest grief I dealt with as it came with the peace of knowing she no longer suffered.

Unfortunately, this cycle could start all over again with my sisters, my aunts/uncles, my nieces/nephews, my son, or myself at any time. The disease doesn’t die with the person affected; it is a family disease, and it is a lifetime of grief as you learn who will have to face this next. At the deepest level of my soul, I am utterly exhausted from the fear of losing more loved ones in this manner.

Grief is heart wrenching; it’s the ball of emotion that creeps up the back of your throat until it comes pouring out your eyes. It is a feeling of helplessness compounded by hopelessness. I deal with it a day at a time. I chose not to know my fate just yet, but I do try and talk to my husband and son about the “what ifs.” They hate talking about it, so we typically get nowhere, but it eases my mind a bit to know I am trying to make my wishes known. I talk with my sisters and aunts about my fears in earnest, as we can be honest with each other as we all live the same hell of the unknown. I try to leave pieces of myself with everyone I love. I create photo albums, scrapbooks, letters to my son, poems, crocheted blankets, dream catchers, and I wood burn special pieces–all in an attempt to leave behind pieces of me if, God forbid, I ever lose myself.

To be perfectly blunt, I could care less about what others say about my grief. Grief is intensely personal; each person will express it the way he or she feels most comfortable. Grief has impacted my life in every way, but the way I chose to deal with it has made me stronger and more grateful for the little things in my life. I know I have to make the most of the time I have left, regardless of whether I get this genetic defect or not–no one knows what day is their last. But I would be lying if I told you I am not completely and utterly terrified to lose every piece of what makes me, me to this horrific disease.

Jennifer W.