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        Huntington’s  Disease and Caregiving
Individuals with Huntington’s disease represent all races and ethnicities. They are old, young, men, women, and even children who will live from ten to fifteen years after the onset of their symptoms. For many of those years, they will require full-time care by indispensable caregivers.

​According to The Family Caregiver Alliance, approximately 43.5 million informal caregivers provided unpaid care to an adult or child in  2015. HD caregivers are represented in those statistics.

​Individuals with HD present their own set of caretaking issues because the illness has two characteristics that make it different from other chronic diseases. 

​Multi-System Involvement

The first difference is the progressive deterioration of multiple systems—mobility, cognition, and mental/emotional—as the number of brain cells involved in the disease process increases. These changes occur more or less simultaneously, unlike dementia which tends to begin with changes in cognition or ALS which affects neurons that control voluntary muscles.

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A Family Affair

The second characteristic that sets HD apart from other chronic illnesses is that it is a family affair. The genetic nature of HD makes it likely that more than one person in the immediate family and many more in the extended family are also afflicted. A daughter may be the full-time caregiver of her mother or a father the caregiver of his daughter. In some cases, a mother may have more than one child with HD, and she herself may be stricken. There are many families that provide the necessary daily care to one Huntington’s-afflicted member, and in those families with more than one Huntington’s individual, caregiver resources are often stretched to the breaking point.

The bottom line is Huntington’s caregivers need all the help they can get. Caregiving is hard work and especially if caregivers are on call 24 hours a day, 7 days a week. It is extremely important for caregivers not to overlook their own health and needs for relaxation and entertainment. Caregivers should seek a support system for themselves to avoid their own isolation, to stay healthy, and to prevent negative consequences like depression and alcoholism. In addition to looking for a local support group, caregivers should enlist the help of family members, friends, volunteer services, home care agencies, and various social service organizations.  The Family Caregiver Alliance is a great place to start. For more information, see Family Caregiver Alliance’s Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers. 

In addition to the resources listed at the end of this section, I highly recommend a unique, blatantly honest, humorously direct, poignant blog about caregiving, written by a caregiver whose mother has dementia. Check out one of her blog posts below and follow her at Stumped Town Dementia. You will know you are not alone!


Lydia Oh Lydia! Lydia the Tattoo Lady!

Or ... she won't sleep a wink. It’s the damnedest thing.

by Lickety Glitz, Oregon


   One particularly sleepless night. One particularly sleep-deprived daughter. One particularly not at all sleepy mother. I had even crawled into bed with her in a no-sleep-’til-Brooklyn haze in a last-ditch effort to entice her to remain in a horizontal state. It did not work as I woke up groggily to Mom outside the bedroom doorway, looking over her shoulder at me whilst beckoning me to join her down the hallway. I begged her to come lay down. Pleaded with her that I was too tired to get up.​


     She approached the bed, continuing to gesture at me until I realized she wasn’t giving me a come-hither motion at all, she was actually pointing at her shoulder blade where her one and only tattoo resides. “You gotta see this!” she exclaimed.

     “Your tattoo, Mom? Are you talking about your tattoo?” I replied.

      She laughed, “Is that what that is? That's just the damnedest thing!”

     I was so exhausted I couldn’t figure out which end was up, but I could recognize that my mother, who had had a week-long stretch of extreme anxiety and sleeplessness, was utterly incredulous and delighted to find this colorful bit of body art underneath her nightgown. I chuckled, both at her and with her, explained that she had got it when she went to Hawaii with her sister Ginny about eight years ago, got her back into bed, and fell fast asleep next to her within seconds.

     What seemed like only seconds later I woke to the swift movement of Mom sitting straight up in bed, bursting with excitement “You gotta see this!” she spouted, arms flailing around her shoulder like a dyslexic drum major.

     Me: “Is it your tattoo?”

     Mom: “I have a tattoo?”

     Me: “Yeah, you got it when you went to Hawaii with Ginny about eight years ago.”

     Mom: “Well! Isn't that the damnedest thing. That's just the damnedest thing!”

     We repeated this performance two more times, each successive time we laughed harder and longer, that crazy kind of laughing, like church giggles, when you just can’t keep it in, and then can’t catch your breath and are pretty sure your bladder isn’t going to be of much service with one more guffaw. I finally managed to drag my dead-tired, laughter exhausted butt to the bathroom to relieve myself and towel the tears of mirth from my face. When I came back to bed Mom was sound asleep. It was the damnedest thing.

Family Caregiving Alliance
Founded in the late 1970s, Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. FCA, as a public voice for caregivers, shines a light on the challenges caregivers face daily and champions their cause through education, services, and advocacy. The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving." 

The Caregiver's Space
"Not everyone has friends who understand or will even listen; that’s why we’re here. We provide a safe and open space—at no cost to you—where you can be real about what it’s like to care for someone dealing with a serious disability or illness."

The National Alliance for Caregiving "is a nonprofit coalition of national organizations focused on improving the lives of family caregivers. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, government agencies, and corporations." 

Articles on this site are written after careful research by the author of Twisting Legacy. Even so, the author is not an expert on any of the subjects. Please do your own research if you have questions about the authenticity of the information in the articles on this website.  

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