Cyndy Hunt Luzinski, MS, RN
Founder and Executive Director, Dementia Together
At Dementia Together, we have the privilege of facilitating a care partner support group, both in-person and online. Deep friendships have formed. Grief is shared. Practical strategies are discussed. And joy abounds, so that people who attend feel better when they leave than when they arrive. Our friends feel seen, heard, and understood by people who are walking similar journeys. They know they aren’t alone. That’s the goal, anyway. And that’s our heart. We aren’t perfect at it, but we all continue to try—together.
We often share with care partners that life wasn’t perfect before dementia, and it won’t be perfect during or after the dementia journey either. But it can still be good.
Perfection is not required. Sometimes, good enough is more than enough. What matters most is not perfection, but presence.
Nothing contributes more to compassion fatigue, despair, and hopelessness than the voices of self-condemnation, which are all too common among care partners striving to care well. The “woulda, coulda, shoulda” voices of condemnation too easily overpower other voices that would otherwise strengthen the ability to thrive in the midst of difficulties.
When stressed, we may need practical strategies for reframing situations that feel overwhelming and defeating. One of those strategies is something that works with ourselves as much as it helps with our loved ones: just “find it interesting.”
Sometimes with humor, and sometimes with tender camaraderie, our support group and workshop facilitators and care partners encourage one another to find it interesting—whether it’s something a loved one does that doesn’t make sense, or something we ourselves have tried that didn’t go as planned. “Well, isn’t that interesting! THAT didn’t work! Now I can try something else.” This approach can be life-changing. Reframing any challenge in light of interesting lessons learned is success. It beats self-condemnation every time.
Is “success” always easy? Of course not, but care partners discover ways to successfully sustain well-being for themselves and their loved ones when they courageously choose to share their journey with people who hold their stories with sacred respect. These are the people who join them in grief and joy, knowing neither are mutually exclusive.
Sharing life with safe people, equally committed to preserving dignity for loved ones whose minds are changing, helps reframe the dementia narrative from tragedy to contentment. “Showing a loved one how to eat a taco, accepting yet another rock from the yard as a gift, watching a loved one shred paper all over the house or make unspeakable messes in the bathroom…those situations don’t seem that funny at the time,” but our care partners say they need to “choose to find the humor in the situations.”
One care partner shared, “Maybe there was nothing humorous about the circumstances as they occurred, but in the telling of the story, it really was funny.” In the telling of the story is where we find mercy…and when the situation happens again and we actually see humor in the moment? That’s where we find grace.
May you find mercy in the telling, grace in the moment, and the freedom to be present for both.
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