http://www.vaildaily.com/news/story.php?ID=282
December 2001
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.”
Veronica Whitney