“MS is a resource drain in terms of time, money
and attention,” cautions Miller. Parents should
think about keeping checks and balances on where
their resources go. When families are making
tough decisions about, say, expensive medications,
they also need to make a plan about financing
college. If a parent needs help at home in the
evening, the family should try to avoid having a
junior high or high school kid miss out on after-school activities to help. It’s fine for kids to have
more responsibility than their peers—within
reason.
One thing that many experts advise is to avoid
having younger children involved in intimate
personal care, even children who are primary
caregivers. This is where an MS Navigator can
help point family members to appropriate care,
whether it’s hiring an aid or reaching out to area
community groups. Call 1-800-344-4867 for help.
Money and legal matters
At some point in a life with the disease, families
with MS need to address issues such as health
insurance plans, wills and healthcare proxies. And
if family members go beyond a legally married
husband, wife and kids, additional issues may
come into play.
Lori and Sally are a same-sex couple living in a
small town in Wisconsin. Because Wisconsin is
not a marriage equality state, they—like many
other unmarried couples—have taken legal steps,
such as arranging durable powers of attorney, to
ensure that they can be involved in each other’s
care, inherit each other’s assets and the like. “We
have wills, an irrevocable trust,” Lori says, “and
a piece of paper that says Sally is my partner and
makes my healthcare decisions. I don’t think we
have to worry, but people can get weird when
someone is ill. So we want to make sure our rights
are protected.”
Family members with any legal or financial
questions should seek help earlier in the process,
rather than later, before any issues turn into
crises. The Society’s Financial Education Partners
program is one resource that provides pro
bono financial planning and education. Visit
nationalMSsociety.org/financialplanning to
learn more, and read “Banking on a life with MS”
on pg. 50.
A world of family
The work that families with MS put into
connecting with each other often translates into
stronger connections outside their immediate
circle. After Michele’s diagnosis, their friends
became more aware, Howard says, participating
in Walk MS events and learning more about the
disease.
Rintell points out that families with MS are full
of resources and can also be helpful to others.
“Everyone can be in some way helpful to another
human being. There is always a way to reach out.”
Many family members get involved in Walk MS or
Bike MS events, or other volunteer activities where
they simultaneously learn more about the disease
and meet other people like themselves.
“Typically, what most of us do when faced with
a challenge is look for a friend or family member
who has had a similar experience,” says Miller. “At
first, families with MS don’t know there are others
who are facing the same issues.” But they are out
there—all family members have to do is reach
out to a world of families with MS, waiting to
connect. “A lot of friends I’ve made since diagnosis
have become our family too,” says Sally. “When
we do the Challenge Walk for the fifth time, it’ll
be a family reunion for us.” n
Elinor Nauen is a New York-based writer and editor who
covers health, sports and other topics.
