Thinking about what we’ll do when my wife’s brain gets ‘stuck’
Jill wants a plan we can lean on when her Huntington's symptoms increase
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On a recent evening, my wife, Jill, who is gene-positive with Huntington’s disease, sat me down and said, “I need you to understand what happens in my head when I keep asking the same question.”
When perseveration hits, it feels to her like a record needle that keeps jumping back to the same line. She can hear herself repeating things and sees my frustration, but she cannot easily change tracks. The more anxious she becomes about “bothering” me, the louder the stuck thought gets.
Huntington’s affects the parts of her brain that help with flexibility and switching between ideas. So when she asks about an appointment five times, it is not because she does not trust my answer. It is because her brain cannot hang on to it. “Imagine trying to hold water in your hands,” she said. “You know you just had it, but then it slips away, and you panic and reach for it again.”
Jill, who likes to have her ducks in a row, has spent a lot of time thinking about how we can handle this better in the future. She does not just want me to react in the moment; she wants a plan we can both lean on when things get harder.
Preparing for future challenges
First, she suggested we rely more on visual tools. “If it is written down,” she told me, “then we both have something to point to instead of going in circles.”
We now use a big calendar, a whiteboard, and simple lists posted where she can see them, so future Jill will have something solid to use as an anchor.
Second, she asked me to practice giving short, consistent answers. Long explanations can feed the loop instead of breaking it.
“If I’m stuck,” she said, “I need you to say the same simple thing each time, not a different version.” Her goal is to create calm, predictable responses we can reuse later.
Third, Jill talked about gentle redirection. She knows there will be times when no answer will truly satisfy her brain.
“When that happens,” she said, “do not argue with me. Help me change the channel.” She suggested a list of simple distractions — “shiny objects,” as she put it, such as taking a walk with our puppy, Dexter — that we can turn to together.
Jill also wanted to address how perseveration affects our emotions. She worries that I will mistake her repeated questions for a lack of trust or respect.
“Please remember it is not about you,” she said. “I am not testing you. I’m scared, and my brain will not let go.” For her, feeling understood takes some of the power away from the thought that will not stop.
Looking down the road, she has even thought about what she wants her medical team to know, so we do not have to start from zero with every new person. None of these ideas will make perseveration disappear, but she takes comfort in having a plan and in being the one to shape how we respond.
As her husband, I’m grateful she is willing to walk me through what it feels like and to help design the tools we need. When the same question echoes through the house for the third or fourth time, I try to remember that this plan came from her, from the version of Jill who could see the future and wanted to make it kinder for both of us.
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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