The Pillar “Group Forum”

https://podcasters.spotify.com/pod/show/ppgstudios/episodes/Conversations-The-Series-Ep-1-e2g9af8 Overview Dr. Melinda Hermanns, a professor at The University of Texas Tyler and psychiatric mental health nurse, shares her personal experience as a caregiver for her mother with Parkinson's disease. She emphasizes the importance of dedication, versatility, and support in the role of a caregiver. Dr. Hermanns also highlights the need for self-care and finding joy in the caregiving journey. She provides valuable advice for caregivers, including giving oneself grace, being authentically present, seeking support, advocating for the loved one, and finding joy in the midst of challenges. The conversation concludes with a lighthearted discussion about personal preferences. Takeaways Caregivers should be dedicated, versatile, and supportive in their role. Giving oneself grace and seeking support are crucial for caregivers. Being authentically present and advocating for the loved one are important aspects of caregiving. Finding joy in the caregiving journey can help caregivers cope with challenges. Personal preferences can vary, but it's important to find common ground and respect differences.

The pace and duties of being a caregiver, for someone with Parkinson's disease, can sometimes feel as though we're always on. If you currently work as well as care for someone; then you know the feeling as a caregiver. We work, we get home, and then the care responsibilities begin. The expectation of being ready and on standby to assist remains in effect generally until our loved one goes to sleep for the night; and for some caregivers that assistance continues through the night. Regardless of how hard the caregiver or the care recipient tries, neither of us will ever know and truly understand just how hard it is for the other. Challenges, arguments, frustrations and difficult moments may arise; but at times it can be difficult to remember/understand that both individuals (emotional/physical/patience) fuel tanks may already be nearly running on empty due to the rigors of the day. The effort to extend grace and understanding to each other is vital, but can be difficult to do as often as needed. As caregiver's it is our role to move past the flare ups, frustrations and the sometimes unsafe/stubborn habits or decisions made by our care partner that can naturally occur between a loved one and a caregiver's assistance relationship. They did not ask for the disease, and are dealing with an extraordinary amount of valid concerns, challenges, changes and frustrations regularly. As caregiver's that can leave us with a range of emotions, that usually remain held within, of feeling spent, emotionally exhausted and stressed. That leaves caregiver's with a residual impact similar to that of 2nd hand smoke; where our own health is directly effected by the environment of which we live. Caregiver's understand how vital we are to the care and quality of life our loved one experiences, and that is yet another factor we silently think about often because we know we need to be ok for both parties to remain ok on this marathon journey of care. So tell us: As a caregiver, what's been your experience(s) and how have you been? What coping skills do you use to endure the marathon of care? If you had only (3) things to share for a new caregiver, what would they be?

Welcome to a safe space to share your thoughts, coping skills, challenges and feelings about playing the role as a "Pillar of Support" for your family or loved one with parkinson's. Get started by commenting below. Anonymity is okay here. Create your Pillar Group member name of choice by signing in/up prior to your first post.