Huntington’s disease is a rare, inherited brain disorder that gets far less attention than conditions like Alzheimer’s or Parkinson’s. In this episode, MaKenzie talks with a college friend who is a working caregiver for her mom, who has Huntington’s. She shares how she and her sister took over their mother’s care, how hard it was to find benefits and facilities that fit a rare disease, and what it’s like to live with a 50-50 chance of carrying the gene yourself. It’s a candid look at the gaps in our caregiving systems and the people who fill them.
Huntington’s disease is a fatal, genetic brain disorder that affects movement, thinking, and behavior. It’s often compared, loosely and not medically, to having Alzheimer’s, Parkinson’s, and ALS at once. MaKenzie’s guest was in college when her mom was diagnosed. Years later, after her parents separated and her mom’s symptoms advanced, she and her sister stepped into the role of caregivers with no medical background and no roadmap.
She describes how difficult it was to shift from daughter to caregiver when her mom still wanted to be the parent, and why she and her sister often needed her mom’s care team to deliver the hard news, like when it was time to stop driving. The benefits system proved just as challenging. She walks through navigating her county’s Aging and Disability Resource Center, untangling Medicare and Medicaid, and meeting the strict asset limits required to qualify for services.
Finding the right facility was another hurdle. Few memory care units accept Huntington’s patients, and the family’s search included a rushed placement, a move closer to a relative, COVID visitor restrictions, and staffing turnover that meant constantly training new aides. She shares how a local Huntington’s Disease Society of America (HDSA) chapter helped her find a facility that welcomes patients with the disease, and why a doctor who visits her mom monthly has made such a difference as policy changes threaten to shorten those visits.
The conversation also looks at what’s ahead for her. With a 50-50 chance of carrying the gene, she talks about being denied life insurance because of her family history, the option of anonymous testing, and why planning for her own future care matters now. She also explains how her family works as a team, with shared power of attorney and a steady group chat, and why caregivers need support of their own, whether through therapy, support groups, or a place to let it all out.