Paying Attention to My Wife’s Silent Suffering

Paying Attention to My Wife’s Silent Suffering
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The events of the past week have reminded me just how tough my wife, Jill, is. I’m grateful for her grit because I know she will need it as the conditions of her Huntington’s disease worsen as the years go by.

Jill is the type of person who rarely complains, but her actions this week took that fact to a new level and reminded me that as her caregiver, I must make sure she knows she is as important as the extent of care she shows for others.

Jill is allergic to many things, including flowers, chocolate, shellfish, and latex. (She jokes that she’s also allergic to work and my bad puns.) She’s been dealing with chronic hives since earlier this year, so she’s been taking a lot of allergy medicine. But it hasn’t helped much.

Recently, she started getting shots of Xolair (omalizumab), which are supposed to alleviate the discomfort she has from hives. As a result, she still wakes up with hives covering most of her body, but the shots and her morning regimen of three different types of antihistamines have improved her condition.

Now that you understand her pain, I can explain why she is so tough. Jill and I work about seven minutes away from each other, so I drop her off in the mornings at the private school where she works, and then pick her up in the afternoons.

On a recent Monday, I noticed 10 pots of flowers several yards away from her office, on the other side of large glass doors. Jill was wearing pants and a short-sleeved shirt. The parts of her skin that were showing were covered in hives. Although the flowers were on the other side of doors, she was obviously reacting to them.

I asked her why the flowers were there. She responded that they were taken inside because they might die from the cold. I asked if those who put them there knew about her allergy. She said yes. They decided that the flowers wouldn’t affect Jill because they were behind doors.

The flowers weren’t moved because Jill said she needed to get permission from her boss, but he was off until later in the week. So, Jill suffered in silence. When her boss finally returned, Jill’s co-workers asked if they could move the flowers.

He said yes, but the room her co-workers wanted to move them to was where kindergartners and aftercare were situated, and Jill worried that students might knock them over and hurt themselves. The flowers were in large, heavy, and breakable pots.

In other words, Jill would rather have hives than put children at risk. Her co-workers said she should let them be moved, and I agreed. I reminded her that she couldn’t continue to be miserable. Finally, she relented and let us move them.

As we were moving the flowers, one of her co-workers said she couldn’t believe that Jill had put up with the flowers for several days. She said she would have complained and whined until they were moved. My response was that Jill never complains. She never complains about having Huntington’s disease. She rarely complains about her hives.

As we walked out of the building, all I could think about was that my wife is the toughest person I know. As a caregiver, I need to help with everything she suffers from in silence. I also need to remind her that she is important when dealing with anything and everything she deals with in her life.

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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.

Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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4 comments

  1. Deb Kelsey-Davis says:

    This story is one of love and sacrifice that is so beautifully told. How often do we realize that our loved ones are silently suffering. God bless you, Carlos, for listening to the silence. Jill is an amazing soul who is teaching everyone she encounters about living a life filled with grace and love. Thank you for continuing to tell yours and Jill’s story.

    • Carlos Briceño says:

      Thank you, Deb, for your kind and thoughtful words. I admire everything you’re doing with your organization, Nourish for Caregivers, which is a blessing to all of us caregivers. Keep up the great work!

  2. John Arelt says:

    Thank you for your continuing story. My mom suffers with Huntington’s and her verbalization has declined dramatically over the past couple of years. Thankfully, she still seems generally happy despite the loss of of some cognitive and motor functions – my dad is a true saint in taking the lead in caring for her. Today’s article though is definitely a good reminder to always be on the lookout for how my mom is truly doing – to look beyond seeing her seemingly comfortable and actively try to parse out if there might be more going on because, more often than not, she will simply soldier on and put on a happy face, not wanting to be a bother.

    One last note. My wife suffered from terrible hives and tried all sorts of antihistamine treatments with very little success. Finally a co-worker suggested she try acupuncture. We were skeptical but since nothing else worked we thought it couldn’t hurt. Amazingly, it worked wonders!! And whatever the acupuncture did seems to have held – she went for a couple of months and then stopped. It has been a few years now and thank goodness she hasn’t needed to return. My wife does still gets occasional hives but nothing like the full body ones she once suffered. It really has been a night and day difference!

    • Carlos Briceño says:

      Hi, John, my heart goes out to your family as you deal with your mother’s disease. It is not easy to see someone you love suffer like that. Your dad sounds awesome. It’s inspiring to hear caregivers who care like he does. I’m glad what I wrote resonated with you, and that you will be extra vigilant regarding her welfare, especially during the times when she soldiers on, not wanting to be a bother. I’m sorry to hear how much your wife suffered from hives. The tip about acupuncture is appreciated. I will pass it on to Jill. Your family will be in my prayers as you continue to deal with the progression of HD in your mom’s life.

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