Couple struggles through serious health issues

Husband is caregiver to wife with MS

By Fred Brown knoxnews.com
 
Paul Efird/News Sentinel
Tony Bethune helps his wife, Tracy, do a physical therapy exercise Friday at their home in Lenoir City. Tracy was diagnosed with multiple sclerosis in 2001, and Tony, after suffering a heart attack and quitting his job, takes care of her full time. They are receiving a News Sentinel Empty Stocking Fund basket for the first time this year.
LENOIR CITY Tracy Bethune says she tries not to look into the future too often.

"It is too scary," she says.

Bethune, 40, was diagnosed with multiple sclerosis in 2001. She was in her late 20s at the time.

Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord, and affects women more than men, according to the U.S. National Library of Medicine.

Not too many years after her diagnosis, her life began to unravel. As her health grew steadily worse with MS, it was discovered that her gall bladder was failing, a fact that was masked by the MS. The gall bladder had to come out.

Tony, her husband of 15 years, says Tracy's liver was damaged in the gall bladder procedure and for a time afterward, her doctors didn't know what was happening with her.

"She was just getting worse," says Tony.

She had to undergo emergency liver surgery, and while all this was going on, Tony Bethune also was struggling.

Before his wife had the gall bladder operation, he had a heart attack, he says. That was caused by a flu virus that damaged a heart valve, he says.

With his wife's condition and his heart disease, Tony had to quit his job as an automobile mechanic.

Along the way, it was found that Tracy was allergic to most of the MS medicines and had to be placed in a nursing home, which she didn't like.

"She lost down to 87 pounds," Tony says.

Then Tracy's doctors found a new but expensive drug that could work for her. Only problem, other than its cost and finding a center to administer the intravenous medication, was its main side effect: "It could cause an infection on the brain and death," Tony says. "There is no known cure for the infection.

"But, this is an amazing drug. Some MS patients are even able to get up and walk again," Tony says.

Still, they considered the consequences for a year, trying to decide what to do.

The drug worked, and that allowed Tony to bring his wife home from the nursing home, where she had been for a year and a half. Since returning home, she has become healthier.

She can stand up with help now, Tony says. Before, she couldn't even get out of bed.

On this day, she is dressed in a purple blouse and pants. She smiles when she looks at her husband, who is her caregiver.

"He gets a little grumpy at times," says Tracy. "But I still love him."

She is in a wheelchair and speaks with some difficulty.

Tony is her primary caregiver but says he has difficulty lifting his wife to give her a bath.

"I just don't have the energy some days," he says. "When she was in the nursing home, there were days when I would just sit here. I couldn't get out of the chair.

"And that's hard for a fellow who is used to working. I loved my work (as a mechanic), and I love to work."

He went to the auto shop early and left late, he says. Even today, he helps friends tune and work with a drag racer, though he gets to go to a race maybe only once a year.

Sandra E. Bell, director of Social Services at Quality Home Health in Alcoa, works with Tony and Tracy. She says the couple is trying to get more home health care now to help with such things as housekeeping.

But, she says, "Her husband is doing a wonderful job of taking care of Tracy."

This allows Tracy to remain at home, Bell says.

This is the first year the couple has applied for a News Sentinel Empty Stocking Fund basket.

"I know that there are a lot of families out there that can use the basket," Tony says.

Bell says the couple were picked for a basket because Tracy was so young when she was diagnosed with MS.

"They have a great attitude and she has been able to come home from the nursing home."

Tracy, who worked as a sewer for an industrial sewing company before her MS diagnosis, says she isn't bitter about her disease.

"You have to accept what is handed to you," she says.

"Life," says Tony, "is one day at a time. You deal with it as you go."

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12/19/11