During Women’s History Month, we are featuring the stories of women who help make the Alpha–1 community great.
Dawn Bailey was overwhelmed with the new responsibilities of caring for Rob when he was released from an extended hospital stay. “I asked the nurse if they had any type of information to help me learn how to care for him at home, but she suggested I take a nursing assistant course,” says Dawn. To find the resources she needed, Dawn went to a caregivers’ support group at her local hospital for Alzheimer’s and cancer patients, as Rob had also been affected by lymphoma. He is currently in remission.
She also recently attended a workshop shared by the Alpha–1 Foundation (A1F) and held by the Care Action Network (CAN), a leading family caregiver organization. There were four components to the workshop, with content focused on preparation for medical visits and how to set goals for the patient and the family.
Rob was diagnosed with Alpha-1 Antitrypsin Deciency (Alpha-1) in 2009, but Dawn never thought of herself as a caregiver until he was in the hospital last year. “As the caregiver, you need to be able to advocate for your loved one and understand the instructions for care, as the sick person is not always able to understand,” according to Dawn.
In the caregiving workshop, they discussed having a go-bag for emergency room visits and having a patient binder with current medication lists and tests results.
“That binder has been invaluable for hospital visits, and for both local and out of town appointments with specialists,” Dawn says. “They also urged us to make sure to let the ER staff know that you are the caregiver, and never be afraid to ask questions,” she added.
Dawn’s advice for new caregivers: “Take a deep breath, and take one day at a time.”
“The hardest part is the change in friendships. Your old friends do not know how to react to sickness, and that is why support groups are important because you interact with people who are going through the same experiences,” Dawn affirms. This is the very reason why Dawn became a support group leader. She has learned so much from her peers and is willing to share her experiences and tools with the patients and caregivers in the Chicagoland Alpha-1 Support Group.
This story appears in the Spring 2018 issue of Alpha-1-To-One Magazine. Subscriptions are free.