Caregivers put their lives on hold

Original source: The New York Times

Aisha Adkins would rather have her own place, instead of living with her parents. She would also like a job, a car, a master’s degree and savings. But at 35, a decade after graduating from Georgia Southern University in Statesboro with a specialty in social services, she has had to put off those goals.

Her mother, Rose, received a diagnosis of dementia six years ago, at 57, and cannot be left alone. Since then, Ms. Adkins has been consumed with her care. “I’ve gone on three dates in the last three or so years,” she said.

She ensures that the family’s home in an Atlanta suburb is stocked with her mother’s medications. She prepares her mother’s breakfast — peanut butter and jelly, with a glass of milk. She bathes her and dresses her and sits her in front of reruns of “The Young and the Restless.” She cooks her dinner: mainly chicken (with a vegetable and a starch), spaghetti or chili. She retires to her room around 10 — entrusting her mother to the television set and Ron, her father, by then home from work.

Ms. Adkins must manage a household on a tight budget, shouldering hefty health care expenses on one income — her father’s earnings as a marketing and sales manager for call-centre contractors. She has no health insurance, and when her father has been out of work, her parents have also lacked coverage. She pays close attention to which pharmacies offer the best deals.

The Adkinses’ situation may be extreme, stemming from a dementia diagnosis at an early age. But even for caregivers who keep a foothold in the labour force, the economic cost can be substantial.

Heather Boldon dropped her demanding job as a paralegal in Minneapolis nine years ago to take care of her mother and has moved in and out of lesser-paying jobs since then, unable to build financial security.

“I’m almost 52, and I’m starting from scratch,” said Ms. Boldon, whose mother has Alzheimer’s disease. “I lost 10 years of my life. What’s going to happen to me?”