PKD Life - Summer 2020 - 10

Ages & Stages

CAREGIVING

Ways to Remain
a Strong Advocate
From a Distance
Identify a nurse or
an aide in your loved one's
nephrologist's office, so
you can talk to that person
about the latest developments. During visits,
consider conferencing in
on speakerphone.

How you can help
your loved one when
you live far away.
By Andrea Atkins

your loved one has PKD
W hen
but lives hundreds of miles

away or more, staying involved in
his or her healthcare can be trying.
Mary Perry, of Antioch, Illinois,
learned that firsthand when her son
Michael was living in South Carolina
and was diagnosed with PKD. Doctors
first diagnosed him with ARPKD but
discovered months later that he really
had ADPKD. MRIs were not properly
shared among doctors, and his medical
team had incorrect information, which
affected his treatment.
Though her son was 33 years old,
Perry felt he needed assistance,
so she moved in with him for five
months to help him find the right
doctors and take care of himself. She
was lucky that she was able to leave

10

PKD LIFE * SUMMER 2020

her Chicago-area home to join him
in South Carolina.
"It's one of the hardest things,"
she says of having a relative be in
another state. "It was horribly frustrating because he didn't take ownership of his healthcare. He needed
me in terms of emotional support
because he didn't know how to ask
the right questions, he was living
alone, and it was very frightening."
The Perry family story is not that
unusual, says Teri Browne, Ph.D.,
associate dean for faculty and
research and associate professor
at the University of South Carolina
College of Social Work.
"There are definitely communication challenges with loved ones'
health teams in terms of understanding what's going on with care,"
she says. "Between HIPAA laws and
the nature of communicating with
healthcare professionals, it can be
challenging for the patient-and
extra complicated when you have
a distance between you."

*

Take advantage of
available help. Medicare
mandates that kidney centers have master's-level
social workers, dietitians,
and nurses, all of whom can
be resources for you, says
Teri Browne, Ph.D., of the
University of South Carolina
College of Social Work. If your
loved one is receiving dialysis
or preparing for a transplant,
you can tap into those kidney
center professionals.
Consider having meals
delivered. Online meal delivery services can ship kidneyhealthy food to your loved
one's doorstep and relieve
you of concerns that he or
she may not be eating right.
Participate virtually.
"More and more dialysis
units are offering Wi-Fi, tablets, and laptops for families
so they can Skype, FaceTime,
or directly communicate
with family members while
they are receiving treatment," Dr. Browne says.

ELLIOTT GOLDEN/THE ISPOT

LongDistance
Caregiving



PKD Life - Summer 2020

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PKD Life - Summer 2020 - Contents
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