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The Parkinson’s Caregiver A job that asks a lot of head and heart.
For professional caregivers, family
members, and friends of someone with Parkinson’s disease
(PD), caregiving can be both a demanding and a rewarding
job. It represents a major
lifestyle change for patient and for caregiver that — all
too often — comes about without warning.
Perhaps the main challenge for caregivers
is balancing — care of the patient with self-care; the patient’s
independence with protection; coordinating schedules, trips
and meds with
sometimes accepting help from others.
All this takes skill, and can stretch
and eventually exhaust a caregiver. So don’t try to
be superhuman. Set realistic goals, and relax along the way.
When taking care of a PD patient,
it's a good idea to remember: the journey is the goal.
The many sides of caregiving.
There are many areas caregivers may be called
to help with — medical, legal, emotional
and more.
Medical.
Caregivers are strongly encouraged to:
- Go with the PD patient when visiting
the doctor, especially if Parkinson's Disease is suspected
but not confirmed. The caregiver’s view can help the
doctor make an accurate diagnosis. Some patients may not
be able
to notice
— or may not be willing to admit — the first
symptoms. Sometimes, patients think symptoms are part of
the aging
process. The
caregiver can assist the PD patient in arranging second
opinions, visits to the neurologist, and to the teams of
specialists
that will become part of the patient’s life.
- Help
with medication regimens. Sticking to the medication
plan and getting the patient
all the medication he needs is
vital. Learn what medicines he needs to take, what dosages
and when, and share this information with the patient
and family members. Put up a schedule on the refrigerator
or
other visible
place.
- Be on the lookout for side
effects. Although the medications patients take are generally
safe, side effects are a possibility.
Watch for unusual arm, leg or facial movements, discuss
them with the patient, and report them to the doctor on the
next
visit. Emotional changes like depression, nightmares and
anxiety should also be reported. Doctors are good sources
of information
on drugs if you have questions.
» Doctor
Visit checklist
Legal. Putting the house in order.
PD patients may need assistance with a variety of legal issues,
including:
- Wills and living wills. Writing
a will may give the patient peace of mind about the future.
It is a good idea for everyone, not just someone with a chronic
disease.
Patients may not want to think about it, but deciding on
matters like
these will put most people’s emotions to rest and
avoid the problems passing without a will poses. Living
wills let
patients specify wishes in the event of medical emergencies
that render them unable to make decisions for themselves,
such as whether or not to be placed on life support or
donate organs
if there is no hope of recovery.
- Conservancies or guardianships
give control of financial and day-to-day care to another
individual if there is a court
decision that the patient can no longer manage his affairs.
- Durable powers of attorney
give a named person the power to act for the patient
in financial and medical matters.
- Issues concerning work and
disabilities. Patients may want to work as long as possible,
and their rights to do
so are protected by the Americans with Disabilities Act.
- Insurance. Looking into
the best insurance plan possible may take some research,
especially if it is done after diagnosis.
Patient and caregiver will want to be fully familiar with
insurance policies and procedures.
- Banking and bill paying.
Simple solutions like banking and bill paying online or
over
the phone save steps for the
PD patient and offer the added advantage of not requiring
handwritten transactions.
- Consult your professional advisor to discuss these
or other issues that may affect you.
Emotional. Feelings can be the most difficult of all.
Negative emotions like depression and
anger are part of Parkinson’s
disease, but they also can affect people close to the patient.
Dealing with a disease that does not go away is one of the
most emotionally challenging things anyone will face. Caregivers
will want to keep themselves physically, mentally and emotionally
strong.
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» Understanding PD
» Patient Resources
» For Healthcare Professionals
» Doctor Visit Checklist
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