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Woman cares for 3 family members with Huntington’s disease

March 26, 2018

MUNSTER, Ind. (AP) — Cindy Rogers doesn’t remember the last time she slept more than four hours in a row.

Twenty-four/seven, 365 days a year, she is the primary caregiver for all three of her adult family members: her husband, son and daughter.

She makes sure they are fed, bathed and clothed. She takes them to doctor’s appointments, as many as 25 a month. She helps them be as functional as possible.

It’s not an easy job. The three have Huntington’s disease, a degenerative neurological condition that Cindy calls like having “Alzheimer’s, ALS, Parkinson’s, muscular dystrophy and cancer all at once.” People with the disorder have involuntary movements, and eventually lose the ability to eat, speak or walk on their own. Life expectancy after onset of the disease is between 10 and 30 years.

The disease affects about 30,000 Americans. It is passed on through genetics; a child of someone with Huntington’s disease has a 50 percent chance of developing it themselves.

Still waiting for cure

Cindy, 61, met her husband, Paul, at a church outing in 1972, getting married five years later. She managed a life insurance office; he fixed pianos and taught lessons.

His father and one of his brothers had developed Huntington’s. Cindy figured that by the time Paul did, if he did, there would be a cure. That’s the same rationale she gave for having kids. She’s still waiting.

The disease also has no treatment. Instead, patients have to manage the symptoms.

“Because Huntington’s is so rare, a lot of doctors don’t know what to tell you,” Cindy said. “You have to think outside the box.”

When her husband started flipping over chairs, for instance, she bought shock-absorbant ones. Her son gets botoxed injected in his shoulders to treat involuntary muscle contractions. She got her daughter a welder’s suit so she doesn’t burn herself when she smokes.

“I really have to be an advocate for what I see,” Cindy said.

Cindy gets paid through a state program to take care of her kids. They can’t drive or cook their own food. “I have to be here to help with their daily living activities,” she said. A nurse comes to tend to her husband.

“I focus a lot of my energy and time on making their lives more functional and enjoyable,” Cindy said. “Helping them find things they can do themselves is a really big thing ... a really big thing.”

For instance, she has them wear clothes they can take on and off themselves: without buttons or zippers.

“If you have the energy and the determination, you can get what you need to get done done,” she said.

Despite her circumstances, Cindy is often cracking jokes, a tool to keep herself from crying.

“Some people might say I’m sarcastic,” she said. “You have to have a sense of humor to live and deal with this.”

She said being sleep deprived is the hardest part of caregiving for her three family members. She’s usually up every two hours to help one of them or another.

Husband at end stage

“Do you want to see the husband?” she asked a visitor. “Do you want to see how this ends?”

Inside a room that smelled of stale bodily fluids, Paul Rogers, now 61, laid in a bed, socks on his hands, hooked up to intravenous antibiotics to treat his bed sores. He can’t chew, swallow or talk. His nurse suctioned mucus out of his throat.

“I play gospel music. He likes ‘Eyes on the Sparrow.’ He has certain songs he likes,” said his nurse, Patriece Franklin. “When I’m watching church, he’ll say, ‘Amen.’ He’s alert and aware of a lot of things.”

“What bothers me is my children seeing my husband and knowing this is their destiny,” Cindy said. “I don’t think I’m angry or bitter, but I am sad for them.”

She keeps Paul at home so her kids at least know that she doesn’t plan to put them in a nursing home.

“For them being young adults and being sick for a while, they have really good attitudes,” she said. “For the most part, they’ve adjusted well to have this horrible, terminal, no-cure disease.”

A few moments later, a delivery driver stopped by to drop off a new feeding tube. At the Rogers’ household, it’s a constant drumbeat of medical equipment being picked up and dropped off: They had just gotten a new hospital bed; a new wheelchair was on the way soon.

“This is my mission,” she said, pointing to the license plate on her family’s van, which read “CURE HD.”

Cindy spends her days juggling insurance companies and physicians’ offices and equipment makers, but in the end it’s worth it for the peace of mind of having her family together.

“My main thing is to let people know there is help out there,” she said. “It’s not easy. Basically it sucks times three. I feel I’m willing to think outside the box and get them the help they need. You don’t have to put them in a nursing home. There are options out there. Where there’s a will there’s a way.”

Kids have good attitudes

The younger Paul, 34, attended a bible college in Illinois before he got sick. He had wanted to become a youth minister. Nicole, 32, worked at a preschool/daycare in Highland for nine years. “I miss working with kids,” she said. “It’s hard to accept the fact that you have Huntington’s.”

Now Paul Jr. spends his days watching TV or going to adult day care, where he talks sports and plays trivia and goes on field trips to fast-food restaurants. “We’re going to Dairy Queen on Tuesday,” he said. “We’re going to Culver’s next Friday.” Nicole likes soap operas, online shopping and collecting American Girls dolls. She and her mom walk at their church three or four days a week.

“She’s real good,” Paul Jr. said of his mom.

To help others in her situation, Cindy started a support group for families of people with Huntington’s. She takes part in other support groups in Chicago and the south suburbs.

“If I can help one family get through this, then I feel good,” she said.

Cindy makes sure to practice self-care. She sees a counselor, the only place where she discusses her feelings. And she never misses a haircut appointment.

“You don’t want to be so doom and gloom that people give up. You’ve got to have hope,” she said. “People tell me I should write a book. I say I’m just trying to survive. These are the cards you were dealt. Play your hand out. I know people who are bitter over things far less serious than Huntington’s.”

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Source: The (Northwest Indiana) Times

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Information from: The Times, http://www.nwitimes.com

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