Even the queen of organizing isn’t immune to HD’s cognitive effects
How Huntington's disease is testing my wife's organizational skills
I’m not what one would call a clean freak. I’m messy and always have been. Sometimes my mind goes so fast that I’ll put things down and forget where. I don’t mind my world being somewhat chaotic; in fact, I don’t really notice it until it’s so bad I can’t ignore it. My wife, Jill, is the exact opposite — at least, she was before Huntington’s disease (HD) entered our lives.
When I met her, I quickly discovered she was an organizer. I know that term covers a lot of ground, but so does Jill. She takes cleaning to the next level. Cleaning is something she does; organizing is something she loves.
Over the years, I’ve learned Jill’s mother and father helped her in her lifelong battle with ADHD by showing her behavior modification techniques. For example, her father, who was gene-positive for HD, taught Jill to put things in the same place so she doesn’t lose them (except the TV remote). That way, she remembers where she puts everything (except the remote). These “cheats,” as she calls them, are her way of keeping her mind organized.
After we married, Jill made it her mission to help me become more organized. I tried, I really tried. But her cheats, while brilliant, aren’t something I can replicate. Once Jill realized that trying to get me to be organized was like trying to get dogs to behave like cats, she decided she’d organize for both of us. She said if I can lift heavy things for her, she could organize everything for me.
She bought bins that I could put my hats and gloves in. She purchased furniture with storage so I could put away my extra books, papers, and anything else I brought home each day. She got me a case so I could carry all my work items in one place.
Her organizational efforts helped, but I still misplaced things. No matter how many bins she got, I’d still forget to put things away. No matter how much storage we had, I’d still leave my papers on the floor. In other words, I was still a genius at being messy.
I know it can be frustrating for Jill to live with my disorganization, but she’s always smiled and said, “I knew you were this way when I married you.”
As you can imagine, I’m grateful for her patience with me and appreciate her organizational genius.
Enter HD
One day, she was sitting on the couch when I came home. She had all of our important paperwork spread all over the floor. She was looking for something. I didn’t think about it until she gave me a distraught look. She couldn’t find a document she needed for a passport application.
I said, “We’ll just get a new copy. It’s not the end of the world.” I walked up to her and put my hands on her face. As she lifted her head, I saw that her eyes were sad. I knew why.
You see, Jill, the queen of organizing, never loses anything, but because her brain functions are starting to decline due to HD’s cognitive effects, even her marvelous organizational skills might not help her find stuff as easily as she has in the past.
I didn’t need to hear her say any of that, and she didn’t want to — but we both understood that Huntington’s is seeping into another aspect of our life. I know Jill will fight with all she has. I just wish I could take the burden from her, just like she did for me with organizing.
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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Comments
Vicki Rutland
Hi I work at the Huntington's Disease Association - covering England and Wales. I enjoy reading your posts! We are focusing on the affects of cognition for the year's Huntington Disease Awareness Month. I would love to share your article with people over here
Carlos Briceño
Hello Vicki,
I am so happy to hear you like our columns. I must say thank you for your hard work and dedication to HD families. I am touched and humbled you would like to share our columns with others. I hope they find them helpful and hopeful. Anyone can subscribe to our newsletter by going to https://huntingtonsdiseasenews.com/a-family-tradition-carlos-briceno/ and entering their email address in the box at the top of the page. That way, they don’t have to search for anything. The weekly comments will be delivered directly to their email inbox. Keep up your important work and know you are appreciated!
Pam Westman
Spot on. ❤
Carlos Briceño
Thank you, Pam!
Sinbum Kang
HI, Im Kang from South Korea, once I left comments on your colums , about 2 years ago..My wife, age 53, dignosed HD in 2020. Every time I read your articles, I could get some courages. Actually for my two daughters, we're afraid of their deep disappointments and not decided to get medical checks for HD. For 2 years, my wife and I just let the disease be, perhaps we tried to forget..I know it's not a good choice and we have to prepare something but I don't know what to do...Here we don't have any social groups or peoples who can help us. From where, I can prepare what ..these are my questions all the time...
Carlos Briceño
Thank you for sharing your story. I am heartbroken for your family and saddened to hear there aren’t any support groups where you are. I understand trying to forget HD and its symptoms. I wish that forgetting made it go away, but I hope reading about our experiences helps you feel less alone and inspires you to face the disease as a family.
When you and your wife go to the doctor, have you asked if they know of any families looking for a support group? I am sure if you are seeking something, there are others who are trying to do the same thing. Even if it’s one other family, you can try and start something small and hopefully it will grow.
Respecting your children's decisions is difficult, and I hope your whole family is able to talk about HD and how it is affecting everyone’s thoughts and feelings. The hardest part of Huntington’s Disease is how it affects the whole family and knowing how to deal with it as a family. There’s so much guilt and fear around it, many people try to ignore it. I’ve learned ignoring it won’t make it easier but taking all of your issues and attacking them one at a time will make life a little easier to handle.