MS
is a chronic, progressive disease of the central nervous system that
affects an estimated 400,000 Americans. Caring about someone with
multiple sclerosis can often change the dynamic of a relationship. If
you are caring for a loved one with MS, here are a few helpful tips.
Paula Gaedtke, mother of two young children, had been the "busiest and
healthiest" she had ever been, finding time and energy for regular
exercise, family activities, recreational softball and performing as a
clown, all while dedicating 45 - 50 hours a week to her career as an
information technology professional. But then in 1997, Paula's life -
and her entire family's - was turned upside down when she was diagnosed
with a relapsing form of multiple sclerosis (MS) after problems with
her vision and balance. Since then, Paula, now age 40, has slowed down
her hectic life and has leaned on her husband and their children for
physical and emotional support.
MS is a chronic, progressive disease of the central nervous system that
affects an estimated 400,000 Americans and close to 2.5 million
individuals worldwide, according to the National Multiple Sclerosis
Society. The onset of MS usually occurs between 20 and 40 years of age,
and is twice as common in women than in men.
Since MS usually strikes at the prime of an adult's life, a diagnosis
of MS can be particularly devastating. For people who have prided
themselves on being in top physical condition, a diagnosis of MS can
lead to fear, denial, anger and questions like "Why is this happening
to me?" While these are the emotions of someone with MS, they also
resonate with the family and friends who love and care for those with
the disease.
Caring about someone with a chronic illness can often change the
dynamic of a relationship. For Paula's husband, Doug, he has lived his
promise, for better or worse, without any hesitation. He has been there
for the many doctor visits, helping Paula get on medication right away
and even giving her the injections she needed for the first year she
was on treatment. Doug also encouraged Paula to implement changes in
her life that will benefit her long term, such as reducing her work
schedule. Her children even notice when Paula starts to lose patience,
as it often signals her fatigue, and they make an extra effort to help
their mom finish tasks so she feels less guilt about going to bed
early.
"MS affects the whole family, and I think what's most important as a
care partner is to be understanding and supportive, to be there for the
good times and those times that are not so good," explains Doug. "As a
spouse, you also need to remember all the things that make a marriage
work: communication, sharing and love. For Paula and me, we have always
had a great relationship, but throwing in MS - something this life
altering - has not made us different. We are still very much in love,
and even more understanding of each other."
The responsibility of a care partner is unique in every situation. Some
care partners must deal with financial constraints in cases where there
is a loss of income or additional healthcare costs. Others may need to
make adjustments due to the physical effects of MS, which might include
moving the bedroom to the first floor for easier accessibility. And,
then there is the emotional support that is the core of every care
partner experience.
If you are caring for a loved one with MS, following are a few helpful tips:
• Learn as much as you can about the disease and available treatment options.
• Find a balance between providing support and assistance, while
allowing your loved one to maintain their dignity and independence.
• Help your loved one know they are not alone in their fight with MS -
it can have positive and long-reaching health and emotional effects.
• Take time for yourself, too, in order to reduce stress and help prevent burnout.
• Check out MS LifeLinesSM, a free resource sponsored by Serono and
Pfizer, developed with the guidance of people with MS - for people with
MS and their care partners.
