Advice for Family Caregivers Dealing With Huntington’s Disease

Recently, a reader of this column posted a comment that touched me. It also reminded me how precarious the caregiving journey can be and how important it is to learn as much as possible about Huntington’s disease (HD).

Since my wife, Jill, was diagnosed as gene-positive for HD in 2018, I have been learning as much as I can about the disease. I already had two HD experts in my immediate orbit — my wife and my mother-in-law, Edwina — both of whom cared for Ken, my late father-in-law, who suffered from HD for many years before passing away in 2011.

Their stories about what they experienced have been invaluable. I’ve also spoken with several doctors who have treated my wife, including Dr. Danny Bega, an empathetic neurologist who specializes in movement disorders at a Huntington’s Disease Society of America Center of Excellence in the Midwest.

I’ve also interviewed great people for this column, such as social worker Emily Zivin and clinical research coordinator Patty Conlon, who understand how HD affects families and pass on information about drug trials and healthcare services.

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So when I read the reader’s comment about her son showing symptoms of HD and meeting with a neurologist for the first time — after his father had died from HD earlier this year — my heart went out to their family.

The reader wrote, “My son’s son asked him to get tested and he did. He never told me the results but he told his brother-in-law, and today we will be visiting the neurologist to see what can happen for him. If you have any suggestions, please pass them along to me. Thanks so much.”

So I sat down with Jill, and we came up with the following suggestions.

What we’ve learned

Find medical professionals you trust and feel comfortable with. Jill had some issues with the first HD Center of Excellence she visited. I looked for another one, and she found Dr. Bega, whom she trusts absolutely. It was important for her state of mind, and in the end, she said she would only take advice from a doctor she trusted.

When making preparations for a doctor appointment, we make a list of Jill’s medications and all her other treating physicians, such as her primary care physician and allergist. It’s helpful for Jill to keep all her doctors on the same page.

The week before we go to the neurologist, I watch Jill closely. She’s asked me to be aware of any new symptoms, or any current ones that have gotten worse. I also note any changes in her sleeping and eating patterns, and any shifts in her mood or memory. Jill said her father never really noticed his decline, so it was important for his loved ones to let his doctor know.

Talk to the social worker at the office. They are knowledgeable and happy to help, and often even take the time to talk to family. When Jill was diagnosed, the social worker let us know that if our daughter or I ever needed to talk, she would be there for us.

Talking about fears and emotions is hard, but important. Find family, friends, a support group, or a therapist. Remember, HD doesn’t just affect the patient, so it’s important that everyone talks about how it’s affecting their lives.

Finally, be there for your loved one and talk about it when they’re ready. Some days I know Jill is sad, but I give her time and space to figure out what she’s upset about. Then, when the time is right, we talk about it.

I hope there will be a cure so that I never have to become Jill’s full-time caregiver. But even if a cure never appears, I will continue to share the good, the bad, and everything else I learn along the way.

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.