More MS news articles for Dec 2001

Loving health care often solitary

December 2001
Veronica Whitney

This is the story of Bill Budd and Evie Rosen-Budd: A love story, a real one. A story about caregiving. About life after a tragedy or a disease strikes home. About knowing where to get help when you need it.

Evie Rosen-Budd married Bill Budd knowing that he had multiple sclerosis. Budd, who was diagnosed with the disease in 1980 at the age of 57, went from an uneven gait to using a cane to a walker to a scooter and in 1992 to a wheelchair.

Evie Rosen-Budd now takes care of her husband at their condo in Edwards. When Budd first went into a wheelchair, he could operate it himself. But over the years, he has lost the use of his hands, depending on Evie who feeds him, bathes him, transports him and operates his wheelchair.

“It’s not easy, but it’s doable,” says Evie Rosen-Budd, holding her husband’s hand. “When something like this happens to you, it changes your life. What we want to say is that you don’t have to do it alone. There are helpful resources for caregivers. Caregiving is more than a one-person job.”

As her husband’s disease was progressing, Evie Rosen-Budd learned about

the National Family Caregivers Association, a non-profit organization out of Washington, D.C.

The association, which has 11,000 members, is for those who care for a chronically ill, aged or disabled family member. The group provides information and resources about issues, ranging from where to buy a wheelchair to how to communicate effectively with health-care professionals.

“Some people don’t think of themselves as caregivers because caring for a loved one seems like second nature or a family duty,” says Rosen-Budd, who now is a state representative for the association in Colorado. “In many ways, caregiving is like a new job. It may require learning new skills, shifting previous roles and tackling demanding tasks.”

Political advocacy

The association, which is free for family caregivers, empowers, educates and supports caregivers across different diagnoses and ages. By contacting the association or a state representative, caregivers can get a list of agencies to contact according to their needs.

“Caregiving is not something you would choose to happen,” Rosen-Budd said. “But when it happens, you can live with it. ”

The National Family Caregivers Association also is instrumental in lobbying for legislation to help caregivers and their families.

In a survey conducted by the association, 87 percent of respondents —mostly members of the association — said they believe caregivers’ lives will not improve significantly without legislative action.

As a member of several coalitions, the association has brought the caregiver perspective to particular pieces of legislation being crafted. Also, association officials have been asked to testify on Capitol Hill about a variety of caregiver issues, including the need to help family caregivers keep their health insurance if they have left the workforce to care for a family member.

Love act

Rosen-Budd, 68, is glad she can have her husband at home and not in a nursing home.

“This was a progressive disease,” she says. “But we like to be with each other.”

Bill Budd says his wife takes care of him out of love and not guilt.

“Being at home makes it possible for me to live a normal life as possible,” Budd whispers.

Rosen-Budd, however, says,her husband makes every day easier with his attitude.

“I’m in a good mood because of you,” Budd tells his wife.

Rosen-Budd hires help to go grocery shopping, walk the dog, go hiking or do yoga.

“To keep my sanity and carry my caregiving duties,” Rosen-Budd says, “I take good care of myself. Our message to caregivers is that they have to take care of themselves before they take care of someone. Sometimes is the caregivers who end up in the doctor’s office because they are so stressed out.”

Rosen-Budd also keeps herself busy as a resource editor for National Family Caregivers Association. She reviews books, tapes, products and services for the quarterly newsletter sent to all members.

“It helps me to keep informed as well as helping others,” she said. “Some products can make people’s life easier.”

Being part of the National Family Caregivers Association makes her feel less alone and isolated, Rosen-Budd says.

“When a problem arises, I know who to call and, if they can’t help me, they will direct my call,” she adds.

“The upside to caregiving is that it can be challenging and rewarding.”