I have had the privilege of supporting JR, whose wife is living with Huntington’s disease in a care facility. We speak weekly on the phone, and he often attends our meetups. Over time, we’ve developed a strong rapport, and JR often tells me that he feels “heard and supported” by HD Reach.
He is navigating a particularly difficult time, watching his wife decline and making end-of-life arrangements. During our conversations, JR has shared that he wouldn’t know where he would be or how he could have made it this far without the support of HD Reach and the Care Navigator program.
JR also reflected on his experiences reaching out to other HD organizations in the past. Unfortunately, he reports that many of those calls and emails went unanswered. He expressed deep appreciation for the personal relationship we’ve been able to build at HD Reach knowing that if he calls, texts, or emails, he will receive a response and have someone to talk to who truly understands what he is going through.
For JR, having Care Navigator support, access to resources, and a space where he feels understood and heard has been incredibly important as a caregiver. As his Care Navigator, it is heartwarming to know that he feels supported and not alone as he navigates this journey with his wife.
Supporting caregivers like JR reminds me every day why our work matters because no one should face Huntington’s disease alone.
