“Most people do very little thinking about what’s
going to happen in the future—about who’s going
to help them outside of their family,” said Michelle
Putnam, PhD, associate professor at the Simmons
College School of Social Work in Boston. Dr.
Putnam, who researches long-term care, has found
that most people with MS don’t think about getting
support until they need it.
Just because a person has lived for decades with MS
doesn’t mean he or she has an established support
system. In fact, the opposite can be true. Many people
have lived for so long with MS that by the time
they need caregiving services, they’re already tapped
out. “They might have already used their 401(k), or
they might have used up their human capital—their
family members are tired,” Dr. Putnam said. One
study found that, although 85 percent of seniors with
MS need assistance with their daily activities, fewer
than half have access to an in-home caregiver.
Part of the problem is financial. Outside caregivers
are expensive. Even when funding is available from
programs such as Medicaid and Medicare, accessing
that money can be difficult. Getting approval for
funding depends on a person’s age, limitations and
location. The aging-services system is a confusing
jumble of federal, state and local programs, making
it hard to know what money is available and
whether a person qualifies for a particular program.
(An MS Navigator® can guide people through the
process, at 1-800-344-4867.)
Asking for support as early as possible—whether it’s
from a caregiver, aging-services agency, or mental
health professional—can prevent a panicked last-minute rush for help. “The more informed you are
and the more you know what’s available, the more
choices you’ll have, and you’ll have a longer time to
think about what’s ahead,” Dr. Putnam suggested.
Older adults with MS aren’t oblivious to the
future. In fact, it can weigh heavily on their minds.
Their biggest fears may include losing their
independence, becoming a burden on their family
and friends or needing one day to move into a
Planning ahead is one way to prevent these fears
from becoming reality. People need to consider
whether they will have enough money to support
their care as they get older, whether their home is
safe enough for their changing mobility and where
they’ll live if or when their disease progresses.
As important as preparation is with MS, thinking
about the future is challenging because the disease
is so unpredictable. “You’re diagnosed and you
have no idea what your condition is going to be
two years from now,” Dr. DiLorenzo said.
One area that needs careful advance consideration
is home safety. Falls are more common with
advanced age in general. Add the instability of
MS, and they become even more likely. One study
found that more than half of older adults with MS
have a fall that leads to an injury.
Making a few mobility-friendly adjustments can
make the home safer and easier to get around.
Improving home accessibility can even delay or
prevent a move to an assisted living facility. Richey
had grab bars installed around her home after she
had a few falls. She’s also installed a bench in her
shower to make bathing safer and easier.
One of the hardest decisions people with MS
must make as they get older is what will happen
if they can no longer make decisions or care
for themselves. It’s hard to contemplate living
in a nursing home or needing end-of-life care,
but these are very personal decisions that need
to be considered ahead of time. Having a legal
document called an “advance directive” drawn up
can ensure that a person’s wishes are carried out in
the way they want—not decided for them at the
last minute by family members.