As any caregiver knows, Parkinson’s disease is
both chronic and progressive. It persists over a
long period of time and the symptoms worsen. Often
the disease has been present for many years before
active care even is necessary. This fact alone can
bring many challenges along the way. A loved one
secretly may have adapted their life to this
condition, hiding any symptoms.
When the time for care arises, a caregiver first
has to take inventory of what is working and what
isn’t. A caregiver may have believed their loved
one was perfectly fine, and come to realize the
truth is far from that. A caregiver for someone with
Parkinson’s must be very organized, informed,
patient and able to modify daily life to any
situation that may arise.
In the latter stages, it’s important for a
caregiver to take a step back and not become totally
entrenched in the caregiving and uninvolved in their
own life. Since Parkinson’s can persist for many
years, by the time the latter stage arrives, a
seasoned caregiver will be an “old pro.”
There is no
“across-the-board” standard for how Parkinson’s
affects any given patient. Just as everyone is
different, every person’s reaction will be unique.
The most common symptoms are tremors, muscle
stiffness and slow movement.
intensify as the disease progresses and alone can
cause problems in daily living activities. A
caregiver must be constantly evaluating what
condition their loved one is in. Parkinson’s is
unpredictable and a loved one may be resistant to
take assistance for as long as they can hold out.
This makes caregiving more complicated. However, it
is their caregiver’s responsibility to help keep
them, above all, safe in any environment. One
important tip is to initially ask a loved one what
they need, and not assume. During the latter stages,
a caregiver should be familiar enough to anticipate
and prepare for a loved one’s needs.
In the latter stage of the disease, movement
itself becomes nearly impossible. A simple task as
dressing could take a person with Parkinson’s
disease literally all day to accomplish. Walking is
very slow, if at all. A lack of balance causes
frequent falls and automatic movements, like the
swinging of arms when walking, disappear. A
caregiver should try to not be frustrated, but
instead, be patient, and respond with love and
As the disease progresses, communication
difficulties and heightened anxiety become more
prevalent. In the early stages, a loved one is able
to hide symptoms easily, but as the tremors and
stiffness worsen, a joke about getting older may be
a good cover-up for the fact that daily duties are
becoming harder and harder to handle.
What can a caregiver do? Get help!
With a loved one in the advanced stages of
Parkinson’s disease, it is nearly impossible to
handle it alone. Whether in-home care or
out-of-home, help is necessary. Whether in-home or
a permanent move, options are available for
caregivers to find some relief. There are many
kinds of caregivers, from live-in spouses to
long-distance children. No matter the caregiver, a
support system is mandatory!
You, the Caregiver
The National Parkinson Foundation’s publication
“Caring and Coping” divides caregivers into these
Stage One: The Expectant Caregiver
The Freshman Caregiver
Stage Three: The
Stage Four: The Pragmatic
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
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
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 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
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.
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.
The unknowns of
the day-to-day caregiving are probably the most
stressful for caregivers. Having systems in place of
organization and support will make these situations
seem less overwhelming.
Adapting the home environment is one of the major
tasks any caregiver must take on. Whether at a
senior residence or the person’s personal home,
small changes can be made to avoid big disasters.
Living areas, kitchens and bathrooms can be adapted
to help the decreasing cognitive and physical
abilities of a loved one with Parkinson’s. Make sure
there are open pathways around the home and remove
obstacles and unsteady rugs, decorations, etc. that
may cause an accident.
Put grab bars in
bathrooms and even along hallways. Designate hot or
cold on faucets with labels and colored tape. Leave
items at chest or waist height so reaching won’t
In addition to changing the environment, a
caregiver must be able to help with adjustments on
daily tasks such as dressing, teeth brushing,
showering, etc. Confusion and unsteadiness make
these seemingly standard tasks challenging. Help a
loved one understand what is going on and proceed
slowly, with care and compassion.
A very common symptom of Parkinson’s is
“freezing.” Help a loved one move around easier by
pretending they are walking over something, or rock
very slowly back and forth to get moving again.
Exercise, to any degree possible, is very important
to a loved one’s health and well-being. Sitting
around will only make their mind-set diminish, as
well as the physical aspects.
Encourage activity, communication and involvement
socially as much as possible. As the disease
progresses, these things will become more and more
challenging to do. It’s important a caregiver
encourage it when a loved one still is able to be
For caregiving in the latter stages of
Parkinson’s disease, challenges will arise. A
caregiver should plan ahead and anticipate problems.
Have paperwork done and organized. Separate tasks
into smaller, manageable parts to encourage
independence. The trenches won’t seem so deep then!
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