ARTICLES / Parkinson's /
How To Be A Parkinson's Caregiver /
Other Articles
By Jennifer Bradley, Staff Writer
You, the Caregiver
The National
Parkinson Foundation’s publication “Caring and
Coping” divides caregivers into these categories:
Stage One: The Expectant Caregiver
Stage Two: The Freshman Caregiver
Stage Three: The Entrenched Caregiver
Stage Four: The Pragmatic Caregiver
The first two stages are filled with learning.
Once a caregiver is entrenched, they are
knowledgeable, prepared and “in the trenches.” A
caregiver in Stage Three “gets it.” The final stage,
the pragmatic caregiver, has been in the thick of it
for more than five years and through it all. They
know what works and what doesn’t. They see
Parkinson’s disease as what is was and what it has
become. They laugh at things other family members
may find sensitive and painful. They have become
practical, realistic and are also experiencing much
personal growth.
In the latter stages of Parkinson’s, it may be
hard for a caregiver to find happiness in the simple
moments. The major joy-killers are the everyday
tasks like bathing, dressing and toileting. It’s
hard to remember who a loved one was as a person
pre-advanced Parkinson’s. Sometimes taking a minute
to tell jokes, share stories and enjoy a fun
activity will bring back the feelings of father/son,
mother/daughter or husband/wife, whatever the
situation.
The National Parkinson’s Foundation tells caregivers
to “hang onto your sense of self.” Regular
activities and routines are also important to keep,
as much as possible. Emotional and physical
exhaustion will only lead to more exhaustion.
Finally, a caregiver needs to see themselves beyond
the car giving role. It’s essential to remember
individual life goals, independent of the caregiving
demands. A caregiver must take time to maintain
social contacts and actually schedule respite time.
Paperwork
Paperwork can be overwhelming for the average
person. For a caregiver of someone with Parkinson’s,
it can be frustrating and time consuming. It’s easy
to lose sight of the goal and just rush to complete
the tasks. From applying for benefits to doctor’s
visits and financial records, it’s a very big task
to take on for any caregiver.
The National Parkinson Foundation suggests
caregivers take a look at the situation as a whole,
using a “big picture” approach. Seeing options as
working together enables caregivers to make
rational, educated decisions. This frame of mind is
especially important when deciding legal, financial
and medical decisions for a loved one. Take a
step back, a deep breath and proceed with an open
mind.
The first part of the “big picture” is honesty.
Don’t falsify any information on any documents. It
will lead to more headaches and hassle later on by
causing others to question your credibility. You
want a loved one to receive the benefits he is
entitled to by law.
The Foundation explains that the second part of
this is consistency. When helping a loved one apply
for different benefits and medical support, a
caregiver must keep in mind that many programs will
require the exact same documentation.
The main question will be: What is a loved one’s
health status at any given point? When
preparing legal documents, this may be measured
against different definitions, but it is important
to be truthful and consistent. Use the
big-picture approach to see how a loved one’s
benefits will all fit together and what gaps may
need to be filled.
Printable Version
