Nora's Story
As a wife, mother to three, and grandmother to five, Nora Groff is the kind of person who has always worried about the happiness of others before her own. A sweet, selfless, and patient “cheerleader” of the family, she always encouraged sports, holidays, traveling, crafting, and most of all, time spent together.
In her early 40s, Nora’s father was diagnosed with Huntington’s Disease (HD), a neurological condition that deteriorates the brain’s nerve cells, impairing cognitive and physical functioning. At that time, the genetic disorder was still somewhat misunderstood, and her family didn’t fully comprehend the complications of his diagnosis, although Nora knew that she was at risk for the same.
In 2004, Nora began to exhibit changes in her habits and personality, which her husband eventually recognized as symptoms of HD. As the disease progressed, it became more difficult for her to be at home. When she was alone, she was at risk of falling or choking because of imbalance and consumption issues. It became both mentally and physically exhausting for her and her family.
Wanting to be an advocate for her mother, Nora’s daughter, Jessie, along with other HD caregivers, founded the Huntington’s Disease Society of America (HDSA) Albany Chapter. While serving on the board of directors, she met several Sitrin staff members who introduced her to Sitrin’s NeuroCare Program. When touring Sitrin, Jessie and her sisters, Jen and Jamie, were impressed with the new NeuroCare unit, and the warm, inviting atmosphere. They also appreciated the stringent training staff went through to work on the unit. From nurses to kitchen aides, everyone was specialized in working with and caring for individuals living with HD and ALS. This gave the family piece of mind for the future of Nora’s care.
Together as a family, they decided to begin by having Nora spend three days in respite care. During that time, she fell in love with the group dynamic and enjoyed activities offered on the unit. Once it was decided that she would live there, Sitrin helped her with the transition. Staff prepared Nora’s room, welcomed her with open arms, and encouraged her to bring keepsakes from home.
For nearly five years until her passing, Sitrin’s NeuroCare Program helped Nora stay safe and comfortable, while bonding with others who were affected by the same disease. Prior to COVID, she had participated in countless group events and activities, including a 70th surprise birthday party thrown by her family and staff on the Sitrin campus, and attended by 45 of her closest family and friends.
Though there had been challenges along the way, more than 15 years after her initial diagnosis, Nora persevered. She appreciated that the NeuroCare staff has treated her with the same kindness and patience that she exhibited throughout her life to others.
