Shared from brainandlife.org.
Tracy Cram Perkins understands the toll of caregiving. For more than 16 years, she looked after her parents, an uncle, and an aunt—all battling different forms of dementia. Her mother experienced postoperative cognitive decline following anesthesia, her father was diagnosed with Alzheimer’s disease, an aunt had vascular dementia, and an uncle had early-onset Alzheimer’s. Her relatives had other chronic illnesses, too, including diabetes, kidney disease, cancer, and heart disease. They all eventually needed wheelchairs, further intensifying the demands on her. “Like many caregivers, I struggled with depression, anxiety, and guilt,” says Perkins, author of Dementia Home Care: How to Prepare Before, During, and After.
The stress of caring for her dad and uncle and working part-time for her husband’s business in the electrical industry proved too much. “It became overwhelming at times, and I could feel myself shutting down,” says Perkins, who is 60 and lives in Seattle. “Knowing how to say ‘when’ and ask for help is not failure. Failure is not asking for help.” She notes the harm, including injury, illness, and even death, that can come to caregivers who don’t seek or accept help.
Carla Preyer took care of her husband, Patrick, for 10 years after he was diagnosed with Lewy body dementia. She avoided burnout thanks to the support of other wives going through similar experiences. “It was really hard emotionally and physically when Patrick was paranoid, agitated, and hallucinating,” says 63-year-old Preyer, who lives in Sacramento. She found a Lewy body dementia support group for spouses on Facebook, which was invaluable. “I’m not sure how I would have made it without their help, support, and friendship.”
