Processing the feelings of guilt that life with Huntington’s throws at us
Being a Huntington's patient or caregiver involves making tough decisions
My wife, Jill, and I often talk about Huntington’s disease (HD), the neurodegenerative condition she inherited from her father. Writing this weekly column causes us to look at our experiences in a different light and put our decisions under a magnifying glass. But after 15 years of talking about HD with Jill, I never realized she;s carried so much guilt about marrying me.
The revelation was staggering. Jill admitted that she often worries she made the wrong decision. Was she too selfish, and did that cause her to hurt the people she loved?
This storm of emotion arose when Jill was trying to figure out how to attend a family member’s funeral with her mother in Ohio, when our daughter would be arriving from Boston the same day. I told Jill it was sweet that she wanted to go, but it didn’t make sense to try to be in two places at once. Usually, Jill tries to be levelheaded when making decisions, so when she started sobbing uncontrollably, I needed to understand why.
It all started at our beginning, she said.
A heart-wrenching choice
When we met and fell in love, we both lived in Florida, as did our immediate family. But after we got engaged, I lost my job. I found another one, but it was in Illinois and started in a few weeks.
Jill had to decide whether to stay in Florida or move with me. I knew it was a big decision for her, but she eventually said yes to the move and to getting married more quickly than we had planned.
Everything went so fast after that. The week after we delivered our vows, we moved to Illinois. I understood the move was hard for Jill because she was deciding to uproot her daughter, Alexus, to a place where we would be starting our new lives together, and where we had no friends or family.
She was also leaving her older brother and sister-in-law right before the birth of their first child. Jill hated not being there for them to experience all the important milestones her nephew would have.
The hardest decision for Jill was leaving her mother while her father approached the end stages of HD.
Jill said she constantly worried about whether she was making the right decision. Her mom would be the sole caregiver to her father right when she needed Jill the most.
Jill almost said no to the move. When she sat down to ask her father what he thought she should do, she did not expect an answer that had a lot of thought behind it. By that time, her dad wasn’t the logical thinker she grew up with. But what she heard was exactly what she needed.
He said, “I love you, and I love Alexus. I love you both enough to tell you to go. I have lived my life. I have loved my wife. I have experienced the joys and sorrows of my own family. I want you to have that. I want Alexus to have that. You deserve the happiness I have found with your mother. Go and start your family.”
She told me later that when he said that, she felt like the floor had fallen out from beneath her.
It was what she needed to hear, but her heart was still torn. She wanted to be there to support her mother just as much as she wanted to be there for her father.
“I didn’t stay, and that meant I couldn’t help her take care of my dad when he was at his worst, and I have always felt guilty about that,” Jill said. “I helped when I could, but it never felt like it was enough.”
I knew what she meant, but I still didn’t understand how going to a funeral would fix that.
Jill explained that she felt bad about not being there for her mom when she needed support. She couldn’t fix the fact that we moved, but going to things with her mother now is how she tries to show her how much she loves her.
I explained to Jill that her mom knows how much she loves her and that going to the funeral would be a nice gesture, but her mom would understand.
In the end, I was heartbroken upon learning the depths of Jill’s guilt. I know I can’t make it go away, but I can remind her every day that she is loved by everyone in our family, especially me.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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