Being a Caregiver Means Being Involved

Carlos Briceño avatar

by Carlos Briceño |

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One of my recent columns was about the Huntington’s Disease Society of America’s annual convention. I participated in a few groups over Zoom because I have to be involved in every step of the journey. We have known about this conference for years because Jill’s mother tries to attend when she can.

Jill and I haven’t attended any conferences in person, mainly because they are usually scheduled in early June. Jill works in a school, so in June she is busy wrapping up the school year while preparing for the next.

Or so I thought.

When the opportunity to “attend” the convention arose, I asked Jill if she would like to sign up for any of the breakout sessions. It would have been very easy for her to participate. She could log on and listen from the comfort of our home. But she declined. I was surprised since Jill is really invested in the progress being made by the Huntington’s community.

I didn’t think much of it until the next day when I came home and Jill was talking on the phone with her mother. She was discussing the sessions her mother “attended.” When she hung up, Jill told me her mom had heard about new medications for treating, and possibly curing, Huntington’s — at which point the question came to me again: Why didn’t Jill participate?

As a journalist, I like to ask questions and try to figure out why people do what they do. It helps me understand the world in some small way.

After I asked her why, she told me that she doesn’t really like the chemistry part of it. She understands medications since she was a pharmacy technician for many years, but she just didn’t find it interesting enough to listen to. Plus, clinical trials don’t always have a positive outcome, and she has a hard time getting invested in something before it has been proven to work. She has enough hope, so no need to think about things that may never come to fruition.

Then I asked her why she didn’t try any of the support groups. She replied that she didn’t feel she needed to belong to one at the moment. Her parents were social workers, so she’s used to supporting others. This usually leaves her feeling unsupported in support group situations.

The last thing she explained was that she really trusts her neurologist and psychiatrist to keep her informed of things that work for Huntington’s patients. It’s like eating out, she explained. There are thousands of ingredients in stores to choose from, but no one picks up the food they will be served. You trust that the chef picked the right ingredients for the meal that you order.

I couldn’t argue with that logic, but I will keep being an advocate for Jill and will continue to monitor developments made in the Huntington’s field so I know that I am taking care of her the best way I can — by showing up and being involved.


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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.


Janet Polizois avatar

Janet Polizois

Thank you for writing this article, Carlos. My husband, Dino, went into an assisted living facility recently as I can no longer care for him at home. He is a big man, i am a small woman, and his HD has progressed. I wanted to keep him home as long as i physically & mentally could.
I know that i did my best for Dino. But i feel a bit lost now as i am no longer his primary caregiver. The last line in your story of “showing up and being involved” helped me define my new chapter of being Dino’s caregiver.
This is a new chapter for both of us. Thanks for the power of your writing to help.

Carlos Briceño avatar

Carlos Briceño

Thank you for sharing. I have no doubt you did everything possible to help your husband. And I have no doubt not having him at home is difficult for you. You are so wise to understand that you all are entering a new chapter in your lives. Adjusting will require a new mindset for both of you. The good news is you have no regrets; you did as much as you could for him. Now it is time to have no regrets for the present and future for you. By that I mean that your reality is that you will do less hands-on caregiving for him, and that means you have to choose how and where and on what energy and time you will spend your time. If you don’t spend your time and energy living life to its fullest, you will have regrets. Life is too short. So live life fully, with no regrets; I have no doubt your husband would want that for you.

James P Graham avatar

James P Graham

I am 85 years old and my wife is 68 years old. She has Huntington's. She went into a coma about 8 years ago for 7 days. She came out of it with no physical restrictions, but started showing signs of Huntington's. Her mother died at age 69 and a younger sister died at 58. Her daughter,aged 45 has it. I have been her caretaker for going on 9 years. All she can do for herself is swallow, chew her food and sip liquid up a straw. I will take care of her as long as I can. At age 85 I am in fairly good health. God is looking after me so I can take care of her.

Carlos Briceño avatar

Carlos Briceño

You, sir, are amazing. What a beautiful testimony of love. I hope your health stays as good as you indicate it is, so that you can continue to take care of her. I'm so sorry to hear that many members of her family has it. I hope they have people in their lives who are as diligent and generous in their love and care as you are.

Thank you for writing and for being such an inspiration!


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