Living with HD - Alys

One of the biggest sources of guilt and conflict is the caregiving aspect of Huntington's Disease.  Even though Lacy had lived away from home for many years, I was often plagued with guilt over not caring for him daily.  He was in a great nursing home, easy for us to visit, but for other families who try to keep their loved ones at home, there is much frustration and guilt and the decision to move their family member to a nursing home is not easy.  The story Alys Bloch tells is typical for many families.

Alys Bloch was initially perplexed about the symptoms that plagued her mother.   “I found out that HD ran in my family when my mother started showing symptoms when I was about 8 or 10.” Alys recalls.   Alys and her brother wondered what was going on, but the siblings weren’t given much information.  “Unfortunately, we were only told that my mom was sick - no further details.  It wasn’t until we were old enough to understand that it really made sense to me.”  Gradually, the siblings became aware of the presence of HD in their family.   “Two of my aunts had it as well, so there was no hiding that it was genetic, that it came from a family gene.”

--> In HD families, the younger generation often takes on the caregiving role, even though they, too, may be at risk for developing the disease.  Caregivers who are at risk watch their grandparent or parent succumb to the disease, and wonder if they are seeing their future as well. 

“I was my mom’s closest caregiver for the last couple of years she lived at home,” Alys explains.   “She counted on me the most, and that was ok.  I enjoyed making sure she was comfortable and our bond is stronger than ever.”  But Alys admits that she felt frustrated watching her mother’s decline and sometimes that frustration boiled over.  “There were times when I was so mad,” Alys says.  “Why couldn’t she [do things] on her own?  But [Mom] understood where I was coming from…that was my least favorite memory of taking care of her.   And when it was time for a nursing home, [the decision to move her] killed me inside.  I still struggle with not taking her to the bathroom and getting her ready when I visit her.” 


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