By Sylvia Schon, Daily Star Staff Writer
March 18, 2004
ŠThe Daily Star 2004
HUSSER, LA - When Myra Jenkins finally decided she needed help caring for her husband, a victim of Lou Gehrig's disease, and her daughter, a victim of cystic fibrosis, she found a mind-numbing tangle of bureaucracy and delays.
"There was paperwork and different offices and different forms, each form was contracted out to a different company. And these companies don't keep in touch with the main people. It was chaos. Total chaos. It strains you mentally, physically and emotionally. It tests your Christianity to the limit," the slim 44-year-old said.
That's why she traveled to Washington, D.C., last month to join others pushing for change and tell her story at the National Family Caregivers Association's Town Hall meeting. It was sponsored in part by Sen. John Breaux, D-La.
Family caregivers need help caring for their loved ones and still maintain their own health and well-being, she said.
In Louisiana alone there are 422,067 people struggling daily to care for family members with serious, chronic diseases and disorders. Together they provide 452 million hours a year of care with a market value in the billions, according to the association.
"I ask that you literally put yourself in my shoes," Jenkins told the gathering. "Pick a week with meaningful personal events such as your daughter's Sweet 16 birthday party where you've scheduled someone to stay with your husband for a few hours while you bring your daughter with CF and about eight of her friends out and your husband gets sick and you have to send them on with a friend. Or your daughter with CF is in a hospital 1 1/2 hours away and the doctor comes in and wants to talk to you about a possible lung transplant and you're at home caring for your husband. The list goes on and on and back and forth between the two of them."
Jenkins and thousands of other family caregivers across the nation, are pushing for the passage of the Lifespan Respite Care Act, already passed by the Senate and now waiting for action in the House Energy and Commerce Committee.
If passed, the Act would create a centralized database so that family caregivers can call one phone number to get help instead of wading through years of red tape, stacks of forms, numerous agencies, changing rules and too little information that comes too slowly.
Jenkins became a family caregiver when her 11-month-old youngest child, Elizabeth Morel, was diagnosed with CF. Now 17, Elizabeth goes to school just like her peers and is a member of the Loranger High School dance team. But she gets winded and needs physical and inhalation therapy every day.
"She has to take pills, capsules, that are about $1.50 each. She has to take four to five of them every time she eats or drinks anything," Jenkins said.
Ronnie Jenkins, 42, a childhood friend, became a quadriplegic in 1981 after diving into a creek and breaking his neck. He had some use of his hands, however, and finished college and became a teacher. He then developed a very successful career as a life insurance salesman.
He became her second husband in 1994. By 1997, it was clear he was losing strength. He was eventually diagnosed with ALS, also known as Lou Gehrig's disease.
His voice box was removed to allow for a round-the-clock respirator and he is fed with a tube. He has lost all use of his hands.
Ronnie has maintained his facial expressions, however, which Myra says is a great blessing. His eyes, bright and alert, follow her every move.
"His smile gives me strength," she said, reaching out to gently adjust his collar.
Like Elizabeth's CF, there is no known cure for Ronnie's ALS.
Though family members pitched in to help with his care, Myra needed more help to keep her family going. The care was so intense that until she got a special mattress, she or a family member would have to wake every two hours to turn Ronnie.
"Every single movement and body function that he needs to make is taken care of primarily by myself with the backup of family and friends, and for the past seven months, a personal care attendant," Jenkins told the Washington gathering.
It took three years of constant phone calls and paper work and "lots of tenacity" before she could get the help of an attendant for 35 hours a week.
That has helped a great deal, she said, but it was long in coming.
Another thing family caregivers need are tax breaks, she said.
The combined illnesses of Elizabeth and Ronnie have taken a financial toll on the family.
When Elizabeth was diagnosed as a baby, the group insurance carrier tripled the premiums on the entire small group where her father worked. That led the employer to seek a new insurance carrier that would not cover Elizabeth's pre-existing condition.
Her care, on average, costs about $4,000 a month, which is now paid by Medicaid. But Myra must keep her income low in order to keep that coverage.
Ronnie's company offered a lump sum retirement, but that and their savings have largely disappeared during the past four years along with Ronnie's regular income.
"We have gone from a comfortable standard of living to a level of mere existence," she said in Washington.
The response from Breaux and other officials was good and Jenkins said she hopes the Act will pass the House for the sake of all family caregivers.