By Orly Avitzur, MD, MBA
In the New York Times story "After a Diagnosis of Parkinson's, a Sister Devoted," Agneta Weber described how her sister, Esther's health declined quickly after she received the diagnosis of Parkinson's disease.
She serves as the primary caregiver as the two sisters have no other close relatives. Like many who care for family members with neurological disease, Agneta's finances are severely strained. Their combined monthly Social Security income of $1,724 can't always stretch to cover their rents, food, medicine and other living expenses, including Agneta's health insurance.
As a neurologist, I often see similar strain in the eyes of family members who accompany chronically ill patients to my office. Alan Pestronk, MD, professor in the departments of neurology, pathology, and immunology at the Washington School University School of Medicine, made a lasting impression on me during an interview for Neurology Today® a year ago, when he remarked, "The second question I ask almost every time a patient comes in is 'How's the caregiver?' "
Dr. Pestronk, whose wife, Ilene, was diagnosed with ALS in March of 1993, learned firsthand about the stress that caregivers can experience. He has since tried to make sure that someone comes in to the house to relieve the caregiver for periods during every week, conceding how frustrated and exhausted he had become at times.
Caregivers like Agneta are truly the unsung heroes in our society. They routinely make personal sacrifices in order to care for the people they love. Many have to give up their jobs, and some risk being housebound themselves. Nearly all struggle with finding home health aides to help them with the daily responsibilities.
Are you a caregiver to someone with a chronic neurologic condition? What advice do you have for others who are just beginning to care for the newly diagnosed?
Please send your thoughts to me via email at firstname.lastname@example.org.
For more resources for caregivers, see: