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  • Like the person with Parkinson’s, the caregiver also had little choice in the matter.  The diagnosis often affects at least two people (most likely you reading this post).  Neither person truly wanted to be thrust into this situation and both, once this happens, are often unsure of how best to proceed.

    Here are some concepts and ideas to help:

    (*Please note I refer to the person dealing with Parkinson’s as the “Hero”.  I mean this in the classic view of the title in that they did not wish for the situation, but pushed on ahead in the face of great odds, not because it was easy, but because they had no other choice.  They often found courage because of the situation, they did not necessarily have the courage or thought of themself as courageous when it all began.)
    <h4>Common Responsibilities for the Role of the Caregiver</h4>

    • Be the advocate for the hero in all situations, especially in dealing with the medical community, and ask the hard questions.
    • Be the note keeper, the second set of eyes and ears, especially when attending medical appointments, since the hero will often get hung up on a detail or buzz word and miss whatever is stated afterward.
    • Have a base understanding of the illness, the challenges and complications, and how the medical process works.
    • Be willing to just sit and listen when the Hero needs to vent.  Try not to problem-solve or use comparisons in this situation.  All you truly need to do is sit and listen, confirm what they are feeling.  Once situations like have completed, be sure to find something to re-energize yourself and do not feel afraid to lean on someone to be able to talk about the experience with afterward.

    <h4>Tips and Strategies</h4>

    • Learn to identify supports that are out there, not only for the Hero, but for you as well (such as your own close friends and family, the medical community, and message boards like this one) It is important that you build your own pyramid of support.
    • Be sure to find, learn and use the tools and strategies that are out there in order to help maintain your own sense of balance, since you cannot support if you yourself are not grounded.
    • Simply be there, in the caregiver role, and do the best you can with the knowledge and skills you have to help reduce the emotional and physical ailments that the hero is facing.

    You have a unique position in that you are most often with the hero. You will have heard the complaints and observed the behaviors. Be sure to communicate these observations to the clinician. For your hero to get the best possible treatment, you need to be able to fill in the blanks for them. Also, you are not having to deal with the primary effects of the diagnosis so it should be easier for you than for the hero to be more grounded, especially if you can recognize just how vital your role is.

    • You will be the one who will not accept a no or a delay in the treatment process.
    • You will push and advocate for the hero’s right to get the best treatment option possible.
    • You will even push against incredible odds, which may not be in the hero’s or your favor, with the belief that to give it your all might only be a long shot, but believing that there is a possibility that a certain treatment might work, and when not pushing means there will be no possible options or miracles.

    Be Aware of Compassion Fatigue

    Signs of compassion fatigue will vary for everyone, but common features will include an elevated sense of irritation, tension throughout the whole body, lack of energy, and either sleeping longer or not being able to sleep. Over time this also causes a decrease in the ability to empathize and connect or the tendency to make comments that are harsh and unsympathetic.

    Keep in mind that compassion fatigue will occur, so take steps to support yourself, learn how to manage your energy and use coping tools, learn how to set up a support team, get your own therapist if needed, and take time away from the situation whenever possible to allow yourself a moment to recharge.

    • Hey Todd,

      My name is Mary Beth. I’m a forum moderator here. My Dad was diagnosed with PD in 2013. I just wanted to say: Wow! The idea of labelling PD patients as “heroes” in the literary sense never occurred to me. But boy, is it ever true. Especially since the literary hero changes over the course of their story. Thank you for thoughts!

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