Posted by: sisubeads | June 20, 2013

Thank you Nola

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Here is one of the amazing lives I am truly honored to be a tiny part of. We (Sisu Beads) were contacted by Nola to make a memorial of her beautiful boy Zach. www.sisubeads.com The story, originally posted on NPR, broke my heart. I received her order and she wrote me a beautiful letter that had the link to this story in it. That was just the beginning of having a flood of emotion, admiration, and love pour over me. It is an honor to have met Nola, her strength and love is what I felt in our phone conversations. We have kept in touch through emails and she even placed another order. She has written beautiful words to me describing how her Sisu Bead of Zach has brought her so much more than she would have thought possible. There is a calmness and a peace that she feels having him with her all of the time. I have Nola’s permission to share their story here.

Why A Young Man Died In A Nursing Home, A State Away From His Mom

Zach Sayne at age 5, with his mother Nola.

Zach Sayne at age 5, with his mother Nola.

       Courtesy of Nola Sayne

Zach Sayne was 25 when he died earlier this month at the place that had been his home for 15 years — a children’s nursing home in Alabama.

But that was too far away, 200 miles too far, for his mother in Georgia. Nola Sayne was trying to bring him back, closer to her home. The story of why she couldn’t reveals the bureaucratic traps, underfunding and lack of choices that plague state Medicaid programs.

We told the story of Nola Sayne and her son Zach in our 2010 series, Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice. One story was about the surprising number of young people — teens and those in their early 20s — living in American nursing homes.

The story explained Nola Sayne’s dilemma and why parents often had no choice about placing their young sons and daughters into nursing homes.

For Nola Sayne it happened 15 years ago when Zach was just 10 and had a feeding tube inserted into his stomach. Zach had cerebral palsy and seizures. He was partly blind and couldn’t talk. No other after-school program would take him.

Nola put a wanted ad in the paper. One older woman said she’d take Zach into her home day care. But it didn’t last.

Sayne thought about quitting her job as a paralegal, but she was a single mother then with two kids. She needed her salary, and she needed the health insurance for Zach. The state of Georgia would pay nothing if Zach lived at home. But it offered to pay the full cost of a nursing home.

But the only nursing home that would take Zach was in another state, in Montgomery, Ala. For the last 15 years of Zach’s life, his mother made that 400-mile round trip every two or three weeks. And when he got sick, she left her job and moved into the hospital with him. She counts 40 hospital stays in the last 15 years, including three hospitalizations for respiratory problems in December and January before Zach died, back at the nursing home, on January 5th.

She’d moved Zach from Georgia’s Medicaid program to Alabama’s because no nursing home in Georgia would take him. When she wanted to bring him home in 2010, Georgia Medicaid officials told her that Zach was no longer a Georgia resident, and no longer qualified for Georgia programs.

Sayne could regain guardianship for her son, bring him home and put him on a waiting list, several thousand people long, for services from Georgia Medicaid. In the meantime, he’d have to live in a geriatric nursing home.

She looked into doing that, but there was another Catch-22. No Georgia nursing home would take a man in his 20s.

Sayne feels her son got good care at the Alabama nursing home. But over time, he got less of it. Until he was 21, he was in a program for children in nursing homes that included physical therapy and other treatments.

Once he became an adult, that program ended. Zach spent the last years of his life mostly in bed and his health declined.

“His life benefited others more than it benefited him,” says Sayne of her son. “Zach taught me so many things. I’m a better person because I was his mother. My selfishness level was pretty high when I was young and when I had him he made me grow up … Since then I’ve never taken anything for granted. Everything’s a blessing.”

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Responses

  1. […] Thank you Nola (sisubeads.wordpress.com) […]

  2. What a great blog! Thanks for letting me camp out here for a little while today. I had a great time and tried to leave my campsite as good as when I arrived. I’ll be back for more heartrending and heartwarming stories.

    • Thank you! I want to reblog your post, which was right there, but I wanted permission first and now I cannot seem to do it. I will try again after I feed the pups and get some work done. I’m happy you read the post on Nola. She is one of my favorites. She feels like family now. You left the campsite beautifully! Thank you.


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