Autumn was 32 when her mother was diagnosed with a progressive neurodegenerative disease. As the only child of a single mother, Autumn knew she would be her mother’s caregiver one day, but neither she nor her mother expected that day to be when her mother was only 59. As her mother’s condition worsened, she moved her into Autumn’s studio apartment. Eventually, Autumn moved them both into an apartment that could better accommodate their needs.
Autumn was able to get her mother approved for Adult Day Care Center Services provided by the Department on Aging in Washington, D.C. These services were essential in allowing her to keep her mother at home while Autumn continued working full time. She was able to drop her mother off three times a week at the adult day care center. Autumn paid for an in-home aide for the other two days of the week. Autumn feels that these services saved her sanity, but she admits her stress continued to increase exponentially as her mother needed increasing levels of care. She often felt she was on a hamster wheel, as she constantly needed to reassess and ramp up services as her mother’s condition continued to decline. She recalls countless sleepless nights, tears, and constant grief over slowly losing her mother, all while continuing to try to provide the best care possible. Additionally, the financial strain continued to grow, and she ultimately had to take out medical loans, which she is still paying off four years after her mother’s passing.
Autumn wants our society to recognize and normalize the experience of younger caregivers. She wants policy leaders to recognize the need for more funding in the Aging Network to cover home based community services for the pre-Medicare and non-Medicaid population. She wants legislators to increase awareness of the challenges of caregivers and raise the country’s commitment to caregivers. Autumn says caregivers need to have access to support and those services need to be available in a timely manner – not weeks, months, or years.