Chelsea Keenan

The Gazette

Iowa has few resources to prepare caregivers for complex medical tasks

Julee Vinz smiles as her sister Michele Vinz does her hair at their condo in Des Moines on Saturday, March 4, 2017. Michele gave up her job and moved from San Diego to Des Moines to care full time for Julee, who has bipolar disorder and Williams Syndrome. (Cliff Jette/The Gazette).

Michele Vinz likes to joke that she’s a psychiatric nurse with no training, no education — and no pay.

Four years ago, the 53-year-old made the decision to move back to Iowa from California to care full time for her sister, Julee Vinz. Julee, 46, has bipolar disorder in addition to Williams syndrome, a developmental disorder that causes learning delays and cardiovascular problems.

(from left) Michele, Tchichi and Julee in their Des Moines condo. Michele moved from San Diego to care for her sister Julee, who has, bipolar disorder and Williams Syndrome. Photo taken on Saturday, March 4, 2017. (Cliff Jette/The Gazette)

“Almost all of my adult life, I wanted to be her caretaker,” Michele said. “She was moving into group home after group home, I was just riddled with guilt.”

Both of their parents have passed away. And Michele was worried over Julee’s care. Julee is very social and trusting, which can put her in dangerous situations, Michele said, recalling how her sister once got into a car with a stranger who was drunk. A law enforcement officer later pulled them over and got Julee out of the vehicle, Michele said.

“She has no boundaries,” Michele added.

Michele has no regrets in her decision to quit her job and move to Des Moines to care for Julee, saying it is the most rewarding thing she’s ever done. But it’s also unbelievably challenging.

“It’s more than a full-time job managing her care,” Michele said. “Now that I think of it, this is the most difficult job I’ve had and lowest pay I’ve received. It never stops. It’s 24 hours a day.”

Michele has to manage Julee’s multiple medications that she takes three times throughout the day. She goes with her to all her medical and mental health appointments. She advocates tirelessly for her health care with providers and the state of Iowa. And when Julie is going through a psychiatric episode, Michele has to be even more aware of her health care needs.

Julee is enrolled with Medicaid, and the sisters participate in the Consumer Choices Options program — a state program that gives families a lump sum of money to hire their own care workers. They use that money to pay Michele for the care she provides her sister, but that only covers about 40 hours each week.

“I don’t get paid to get up in middle of night because she’s had nightmare,” Michele said. “She has high anxiety all of the time. Even the littlest things can set her anxiety off the charts. Complicate that with ups and down of bipolar disorder and it’s like, oh my gosh, I never am quite sure what I’m dealing with.”

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