My Mother-in-Law’s Perspective on Loving People With Huntington’s
What it's like to have family members who are gene-positive for HD
My wife, Jill, and I selected “A Family Tradition” as the name of this column because of the genetic nature of Huntington’s disease (HD). If someone has the HD gene mutation, their children have a 50% chance of inheriting the disease. It’s a tradition that no one wants to pass on.
But what happens if you don’t have HD, but your family members do? How do you feel when it runs rampant among those you love?
Like me, my wonderful mother-in-law, Edwina, understands. Her late husband, Ken, her daughter, Jill, and her granddaughter Alexus (Jill’s and my daughter), are all gene-positive for HD.
I recently conversed with Edwina via email to understand what kind of impact this horrific family tradition has had on her. She explained that being a wife and caregiver to someone with HD has affected her differently than being the mother and grandmother to young women with the disease.
“Although I knew my husband’s aunts and uncles who had HD, I was not around them on a daily basis,” Edwina wrote. “We had been close to his family members in Pennsylvania, but when we moved to Florida, our contact was infrequent. My husband’s aunts also had a different journey with HD than my husband. I was naive about the life changes that were about to happen. With my daughter and granddaughter, I am more aware of the effects of HD, so my reactions are different.”
Her feelings toward her husband are also different from her feelings toward Jill and Alexus. She described Ken as her best friend and biggest cheerleader. He was warm, kind, and quirky — someone she loved deeply.
“After our son was born, I understood the intensity of love that a parent has for a child,” Edwina said. “I used to say that, if my husband needed a kidney, I would sacrifice one for him, but if my child needed my heart, I would gladly give it to them. When my granddaughter was born, I had the same intense feelings for her, so the concern that I had for them was more overwhelming.”
What isn’t different is how important it is to receive support from family members.
“We were blessed by having a family early on that did not hide from the diagnosis, but chose to be supportive and available to affected family members and their immediate family,” she said.
Edwina cited the “tremendous” support she received from Pam, Ken’s “twin cousin” who was born on the same day as Ken, and Pam’s husband, Bill, both of whom were active in their local Huntington’s Disease Society of America chapter and kept Edwina up to date on the latest information.
“If you have one member of your family who is gene positive, you will need support,” she said. “In my case, my daughter was a co-caregiver to her father. Both persons who are caregivers and those who are gene positive need outside support for their mental well-being.
“Also, don’t be afraid to laugh or cry when you need to, both alone and with family and friends. Enjoy the good days and the sunshine and take care of yourself when you can. You can’t help your family members if you have nothing in reserve. A friend of mine used to tell people to always have a list so when someone asks you how they can help you will have an answer — and then use the help.”
Like many in the HD community, Edwina believes a cure will be found.
“I pray daily for the scientists who are working on the medicines and other medical advances because their work is life changing for HD [patients],” she said. “I am hopeful and believe that a cure is going to happen sooner rather than later. I have seen huge strides in the medication that alleviate[s] symptoms since my husband’s aunts received their diagnosis. The annual updates on the medical advances in HD are amazing and, while setbacks occur, the progress gives me great hope.
“Persons who have HD and their family members need to choose hope every day because this disease — like life — is a marathon not a sprint.”
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
John Michels
Great post! Love reading them
Carlos Briceño
Thank you for reaching out and reading our column. I’ll keep sharing as long as we keep having readers like you.
Ian
Thank you for writing these. They are a great source of insight and hope.
Carlos Briceño
Thank you for your kind words. I am glad to hear sharing our story can give you hope.
Dawn
Loved reading this article. My cousin unfortunately passed away in 2020 from the disease. Her mother also had it and passed away. Support is a big help to people and caregivers of this terrible disease. I first hand saw what the effects of the disease do.
Carlos Briceño
Thank you for sharing your story. Our family is both lucky and unlucky to have so much knowledge about loving someone with HD.
Carolyn D.Jones
My mom married my stepdad in1964.Later we find out he has Huntington's. At first things was fine,some jerky movements and the army had to let him go after 20 years of service.Things really started getting a lot worse.He would spill his coffee,Said he killed people,he had them buried in our back yard,the police came and dug up the yard looking for the bodies,of course no bodies.He would chase you down with knifes,and so many other things he did.He was a good man,husband and Father,yes I said Father,because before that Huntington's took over the man we knew He was the man I thought of and called DAD.My real dad wasn't in our lives.I loved that man,the one I saw go from a vibrant man to a man that couldn't even sit up in a chair at th VA my mom had to put him there he got so bad.I wish he was still with me but not with that horrible disease called HUNTINGTON'S CHOREA.He passed on Feb 31973.