An uncharacteristic kitchen accident reveals new cognitive issues
Huntington's disease damages the brain’s information processing center
On a recent afternoon while I was at work, my wife, Jill, sent me an alarming text.
“I’ve had a little issue with a knife and my thumb,” she wrote. “If it hasn’t stopped bleeding by the time you get home tonight, I may need to get stitches.”
I immediately called her. She was cutting fruit and the knife slipped, slicing into the top of her thumb. The bleeding was nonstop “for a bit.” I offered to leave work right away, but Jill, who always downplays what’s wrong, said, “I don’t want to go to the doctor’s if I don’t have to.”
Jill has always had anxiety about going to the doctor’s office, but since she was diagnosed with Huntington’s disease in 2018, her anxiety about going anywhere has worsened. I’ve been married to her for 15 years and have figured out when she doesn’t want to talk about something. I knew that if I pushed, she would say everything was fine and not tell me if she needed stitches.
I said I was sorry and told her to text me if she needed me to leave work. I reminded her that her health was the most important thing to me, and I would drop everything to take care of her. She thanked me and said she would let me know.
Later that afternoon, on the drive home, I called and asked her how she was doing. She said the bleeding had stopped, and she was icing it. I let out a sigh of relief.
‘It’s my brain’
When I got home, after picking up dinner first, the house was dark, so I assumed she was asleep. I quietly went into the kitchen to put the takeout food on the counter and saw the bloody mess the cut had made. Blood was on the counter, the floor, and all over the sink. The blood was surprising — not because of the amount of it, but because there was blood at all. No matter how badly Jill is hurt, she can’t stand leaving a mess.
I tiptoed into the living room trying not to wake her, but as my eyes adjusted to the dark, I noticed she seemed to be moving. Then I heard a sniffle. I turned on the light, and Jill was balled up on the couch, crying.
I ran over to her, figuring the cut was bad enough that she needed to go to the hospital. “You need stitches, right?” I asked. Jill shook her head. I told her I wasn’t giving her a choice. If her wound was bad enough to make her cry, I knew she needed medical attention. Jill shook her head again.
“It’s not my finger, it’s my brain,” she said.
I had been so worried about her finger, I couldn’t understand what she was saying. Between sobs, she explained, “I picked up the cantaloupe and cut it. I held something while cutting it.”
I began to understand.
When I met her, I was clueless in the kitchen. For instance, I did not have proper knife skills. The one thing that bothered her the most was how I cut things. I would always pick up things and cut them while holding them. Jill would lovingly correct me by getting a cutting board out and, putting her hand over mine, show me how to properly use a knife. She would softly say, “You will cut yourself if you continue to do that.”
Every time I would see her slice something, it was always carefully and on a cutting board.
So, basically, what she was telling me was that she had cut herself because she was doing something she would never do. It wasn’t because she was clumsy, but because Huntington’s disease has started affecting her in a way that is changing the way she thinks and acts. This is one of the ill effects of this rare disease: It causes changes in the brain that lead to a severe decline in thinking and reasoning skills.
I hugged her and joked that I would take over in the kitchen if she wanted me to. She sniffled and said, “Thank you, but I like not having the fire alarm go off every time we eat.”
Hearing her say how Huntington’s is adversely affecting her brain made me sad. But what gives me hope is knowing that Jill and I will always rely on our love and sense of humor to overcome whatever obstacles Huntington’s causes in our lives.
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.
So sorry you were injured Jill. I'm 53 and I am not me anymore. I've been tested finally, but have not heard the results yet. I understand what Jill was saying... my hubby just told me recently that I am not retaining what I just told him an hour ago. Its not bad like that all the time... I have good days and bad. I'm hanging on to my job as long as I can. You have to laugh about it; I told my hubby this weekend "challenge accepted". We constantly laugh. One good thing about huntingtins, for me is, most of the movies and series we watch on TV are new for me. Buy the way, I never like leaving the house... so weird.
Thank you for sharing your story, Chris. I am sorry you have had to test for HD. It is unimaginably cruel, but laughing about things definitely helps lift the spirit. Jill and I try to do that as much as we can. Leaving the house is one of the worst symptoms of the disease. Jill asked me to let her know when I notice she starts to experience HD “apathy.” She said that her father discussed that with his neurologist. The neurologist would work with his medication so he could fight that feeling. Jill said it’s easy to accept things as “just part of HD,” but it’s important to talk about what is going on in case there’s something that can be done about it. Talking to your physician about those feelings are important for everyone, not just those suffering from HD.
Fortunately, I, as the caregiver, do not work.
I am having problems dealing with the brain changes I see in my husband
Is there a zoom class or something else that can help me cope without losing my temper?
I could use coping mechanisms.
Elaine, Help4HD has a care givers support group every Tuesday at 4PM CT, Zoom info is ID #844 1619 4112 passcode 256817. Great group of people. Hope that time works for you.
Thank you Helen,
I am so happy to see our readers are able to share knowledge and advice. Support is so important to not feel alone.
I am happy to hear that your husband has you at home with him. Caregiving is not easy and if you are able to speak with a mental health professional, that may help. Talking to family about what she was going through is one way Jill and her mom dealt with her dad’s decline. Jill told me that getting upset and frustrated is human and understandable. If you go to the HDSA and HelpforHD websites, they have a list of support groups-they are a great source of advice and support. If you would like someone to talk to, there’s a link on the HDSA website for families affected by HD to have several therapy sessions at no cost to you. If you are going to a Center of Excellence, speaking with their social worker is another great
Sorry to hear about Jill's accident. While I have taken over most of the cooking duties, we do have some plastic knives bought on Amazon for my wife to use. They are safe and she can use them to cut up carrots or meats surprisingly well.
Thank you for sharing one of your “HD hacks.” Those are the little things that help the person with HD continue to feel they have some control. It’s a great idea!
Dealing with the “antics “ of my daughter sometimes causes me to almost loose it! The thing that helps me the best is to get away for alittle while and take breaks. Her husband and grown children are helpful with this. We work together well, but it is always challenging. Some nursing homes have respite care for a week which gives caregivers a break. I also have 3 praying, understanding sisters on a grouptext or a phone call away to whom I can vent. That always helps! Reminding might yourself your husband can not help what he does. Dementia training taught me that we have to get in their world, because they can’t get in our’s. Remember to forgive yourself, because this is Hard! I read one book that quoted a doctor as saying if the devil made the worst disease he could come up with, it would be Huntington disease. Thankfully, there is so much more known and support than when I was going through it with my husband who died in 1999. Sadly, it has been 30 years since the gene was found, and still no cure. We will keep praying.
I am sorry your life has been so affected by HD. It is the worst thing I could ever imagine to suffer from. Caregivers don’t always get the respite they need, so finding someone you are able to talk to and count on is super important. Jill tells me on a regular basis that as time goes on, I have to remember to take care of myself and to remember that no one is perfect. Your advice is just what I too would have said. I am touched that you all are reaching out to each other with advice and support.
Pam Voss Westman
Carlos and Jill, thanks for sharing. I just told my brother yesterday that he needed to call or text my hubby from now on because I'm struggling to use my phone. Are you kidding me?!!! The changes we have and the tears we shed are understood by all.