Season for Sharing: Aging with Down syndrome – AZ Central

Debbie Lemon has always been protective of her little sister.

Part of it was their age difference — 12 years to the day — as well as their familial bond.

But it was something else entirely that led Lemon to stand before a judge several years ago and promise to watch over her sister for the rest of their lives. Lemon knew the day would come when their mother would no longer be able to care for Lyndsy, who has Down syndrome.

Lemon happily stepped up to become a legal co-guardian, ready for the challenges ahead. And while the good feelings from that day remain fresh in her memory, the full impact of being her sister’s keeper was still years away.

As people with Down syndrome live longer thanks to health-care advances, more siblings are finding themselves in the role of caregivers, and many are unprepared.

But they aren’t the only ones. Medical providers and professional caregivers also are struggling to meet the needs of people living well into their 50s, 60s and even 70s, long past the life expectancy of previous generations.

Thrilled to have a sister

The 12-year-old Debbie who first set eyes on the bubbly infant more than four decades ago had no such concerns for the future. She was thrilled to have a baby sister, no matter if she was “different” as her mother Valerie Friel explained a few weeks before Lindsy was born.

Even as those differences became apparent, Lemon loved her kid sister as any big sister would. It was an easy and natural relationship, one that matured and progressed as years went on.

Lemon’s perspective was forever changed on a tragic day when Lindsy was 8 years old. A traffic accident claimed the life of Lindsy’s father, and he’d left behind little money and no insurance.

Though her mother carried on valiantly and cared for Lindsy without any help, Lemon knew where life was bound to lead her.

At the age of 20, Lemon saw her future through reality’s unfiltered lens.

“I knew at some point, (Lindsy) was going to be with me,” Lemon said.

She had to be prepared.

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