Cindy Rogers never gets a day off. She barely recalls a time when she slept for more than a handful of consecutive hours. This is because Cindy serves as primary caregiver for three members of her own family: her husband, and both her adult son, and daughter. All three have been diagnosed with Huntington’s disease. Keep reading to learn more about Cindy and her family, or follow the original story here.
Cindy makes sure each of her family members gets to the doctor. Sometimes this means as many as 25 visits each month. Beyond that, Cindy ensures that all three of her husband, and children are clothed, bathed, and fed. She tries to help them live as well as possible.
None of this is easy. Taking care of just one person with Huntington’s can be a handful. Three is a life-full. Cindy describes Huntington’s as a combination of Alzheimers, ALS, Parkinson’s, muscular dystrophy, and cancer.
Patients with Huntington’s lose many routine and vital functions. Movement becomes difficult, eventually patients are no longer able to eat, or speak. On average, patients live 10 to 30 years after onset of Huntington’s
Cindy and her husband, Paul, met in 1972. They married in 1977. Some point after this, Paul’s father and brother were diagnosed with Huntington’s. The couple figured that by the time it showed up for Paul, researchers would have found a cure. Cindy says they felt the same way about it when deciding to have children. Doctors have discovered methods to treat symptoms of the disease, but a cure is something Cindy and her family continues to wait on.
When Paul began knocking over chairs, Cindy bought ones that were made to absorb the impact. Her son’s involuntary muscle contractions are treated with botox injections. Cindy got a welder’s suit for her daughter so she doesn’t burn herself when she smokes.
A state program helps pay for Cindy to take care of her children. Neither of them are able to operate a vehicle, or prepare food. Cindy needs to be present to meet with their daily needs. A nurse visits them to help with her husband.
“I focus a lot of my energy and time on making their lives more functional and enjoyable,” Cindy says.
She says that helping them discover things they can do on their own is huge. Even small things – Cindy found ways for them to wear clothing they’re able to put on and remove on their own. It’s easier for them to maintain their independence in clothes that don’t require zippers or buttons– both of which require higher levels of fine motor skills.
“If you have the energy and determination, you can get what you need to get done done,” Cindy says of her efforts.
Cindy says the lack of sleep is probably the hardest part. She wakes up almost every other hour to assist one of her family members with something. Sometimes all Cindy can do is cope by finding humor in the situation. Some people might describe her as sarcastic, but Cindy says a sense of humor is the only possible way to deal with this kind of illness.
As she continues to care for her family, Cindy describes her mission as being an advocate for what she sees. She still believes a cure will be found, and that her efforts may help that goal be reached.
“My main thing,” Cindy says “is to let people know there is help out there.”
