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How To Be A Parkinson's Caregiver

By Jennifer Bradley, Staff Writer
(Page 2 of 3)

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 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.

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