By Amanda Estes

Staff Writer

    “Why would I even agree to this trip with these
known obstacles-let alone the ones I feared but hadn’t yet
discovered?...He was dying and his body was degenerating. More
deterioration was inevitable, but I had to take the chance. I had
committed myself to giving Charles the best experiences possible
despite his disease.”

    In chapter four of Finding Meaning with Charles:
Caregiving with Love through a Degenerative Disease, Janet Edmunson
recalls her initial fears at the number of obstacles she and her
husband would face if they accompanied her mother on her travels via
boat from St. Petersburg to Moscow, Russia.

    It was two years after Charles, then 45, began to
have difficulty navigating stairs, one of the first symptoms of
Cortical Basal Ganglionic Degeneration (CDBG), a rare neurological
degenerative disease that was not correctly diagnosed until after his
death in 2000. Edmunson worried how they would handle the long flight
and, once they got there, how Charles would make it up and down the
boat’s stairs. His disease had already caused them to move from their
Victorian home in Newton, Mass. to an apartment. In the end, however,
Charles’ determination and Janet’s own desire for them to share life’s
adventures despite his failing health, overpowered her fears and they
were off to Russia.

    During a recent interview, Edmunson said exploring
new places together was just one example of making meaning out of her
experiences caring for Charles during the five years he battled the
disease that took away his abilities to write, read, walk and talk.
Finding Meaning is her first book, geared toward others caring for
loved ones and those they are caring for, but Edmunson believes the
book’s uplifting message and affirmations offer something for everyone.


    “This whole process that you’re going through isn’t
for naught,” she said. “You’re going to find some blessings, you’re
going to find some gifts [and] you’re going to find some positives out
of it. I knew that today…was going to be the best day, better than what
we were going to see down the road.” 

    She acknowledged that most people won’t be able to
travel abroad as she and Charles did on several occasions, so it is
important to make the most out of little, everyday experiences.

    “One of my affirmations is to explore adventures
together to store up fond memories to sustain you,” she said.

    Edmunson said it could be something as simple as
getting frozen yogurt everyday, which was something she and Charles did
regularly during their 20-year marriage.

    “You’re giving the experience to the person so the
person feels like they’re still living life and you have these memories
that you can think about, giggle about, pictures you can look at that
can get you through saying ‘Yeah, we did have some fun, we did do some
great things, he did have a great life although the disease was killing
him.’”

    As Edmunson encourages others to create memories,
she knows that being a caregiver is not easy and as their loved one’s
disease progresses they can be faced with a whole new spectrum of
issues.

    “In Charles’ wheelchair, in the backpack, I’d have a
urinal, towels, Handi Wipes- it’s almost like having a baby,” she said.


    She added that they would often go out to lunch and
Charles’ failing eyesight made it difficult for him to eat.“You have to
be willing to, in public, allow for a mess because sometimes that’s
what it will be.” 

    Too often, Edmunson said caregivers, for a variety
of reasons, do not get the help they need whether it be having a
respite care or hospice care professional come into their home or
joining a family caregiver support program. Looking back, Edmunson said
the middle stage of Charles’ disease was especially difficult because
she didn’t yet have the outside help.

    “I looked back and said, ‘I was a zombie,’” she
said. “Once I got out of the fog, I could look back and say, ‘I don’t
know how I did it.’”

    Edmunson said there was a period of time where
Charles was waking up every hour, so for two years they were both
deprived of deep sleep. She said she was also just looking at a study
that said caregivers sometimes die before the person they’re caring for
because they don’t take care of themselves.

    Edmunson said the discussion about seeking the aid
of a visiting nurse or other healthcare professional is one of the most
difficult discussions caregivers will face because their loved one is
not only losing their independence, but now they must also rely on a
stranger to help them with their most basic needs. By 1998, the
managers at Web Industries, where Charles was Vice-President of
Manufacturing, insisted that he get an aide if he was going to continue
to work.

    Edmunson recalled Charles’ first experiences with an
aide at work and said he had difficulty getting used to the idea of a
young, female nursing student accompanying him to the bathroom.

    During one of her discussions to a caregivers’
support group, Edmunson said she learned something from the woman
leading the group that she believes would have helped her in that stage
of Charles’ illness.

    “What she was teaching her caregivers to say to
their spouse or the person they were caring for is, ‘In some cases, you
don’t have a vote,’” she said. “I thought that was really good. It gave
the caregiver permission to make a decision that was important really
for the two of them.” 

    As someone suffering from a degenerative disease
must constantly adapt to the changes in their body, a caregiver must
also be ready to adapt. It can be difficult to maintain any sense of
normalcy, but Edmunson stressed the importance of caregivers holding on
to their passions and the things that make them who they are. For
Edmunson, an important part of sustaining herself was continuing to
work. After seeking assistance from hospice care, Edmunson was also
able to take time to visit with friends, exercise or just spend time
alone. 

    “You become the helper of that person so you stop
doing all of the things you used to do,” she said. “That’s something I
try to encourage people to do, hold on to your passions because they
are the essence of who you are.”

    Edmunson recently retired as the Director of
Prevention and Wellness at Blue Cross and Blue Shield of Massachusetts
to conduct speaking engagements around the country.

    She moved to South Portland last month, where she lives with her second husband Jim and his children.

    For more information about Janet, her book and speaking engagements, visit www.janetedmunson.com.