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April is Parkinson's Disease Awareness Month. I've been posed five questions by the Parkinson Society British Columbia and I'll be answering one each Monday.
The first question is, "How can sharing Parkinson's and caregiving stories be both supportive and therapeutic for those involved?"
From my point of view as a caregiver, the difference between supportive and therapeutic was the difference between giving and receiving. Just telling my stories was therapeutic for me because I could open up about what was bothering me instead of suppressing or denying it. When my audience responded with sympathy and kindness and advice, that was supportive. And when they told their stories, our roles were reversed. I could support them.
I found two types of value in sharing stories: information and kinship. From others' stories, I learned of numerous programs or techniques or products that I was able to use. And when I talked about what I had l had discovered, some caregivers made notes and thanked me for the advice. We caregivers are being drawn into a world where most of us have no training, no background, and no expertise. Being good at that means learning. Stories are a great way to accomplish that.
Kinship allowed me to be part of a group that had something in common. We were all caregivers. Kinship is different from friendship or family relations because it provides a context for discussion and an environment that encourages frankness and vulnerability. I have family and friends whom I love and who are supportive of what I do, but there were aspects of caregiving I did not want to discuss with them. I had two reasons for that restraint. The first was that some aspects of caregiving are sensitive. Discussing the need to give personal hygiene is not a topic for the dinner table, but it was something I could discuss with other caregivers because they faced the same challenges.
The second reason I chose not to discuss caregiving with my family and friends was that I wanted them to remain family and friends, not to become surrogate therapists. I needed them to be people I could socialize with and enjoy in a world beyond caregiving.
This last point brings me to an aspect of caregiving stories that is critical: it matters who you tell them to. The point of telling them is not, as most storytelling is, to entertain, it is to seek support and to give it to others. And that can only come from people who are going through the same challenges. That's the reason I'm a fan of support groups. They encouraged my stories, they gave me support, and they allowed me to return the favor. Caregiving is never easy, but it can be eased.