Seeking Support - Real Women Speak

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By Heather Lee Leap

“Do you ever feel like a Halloween pumpkin left out on the porch a little too long? You look good on the outside, but inside you are empty, ready to collapse, and literally getting eaten up by something you can’t even recognize?” Mantu Joshi writes this in his book, The Resilient Parent: Everyday Wisdom for Life with your Exceptional Child.

I’m fortunate not to have children with special needs, but I purchased this book because so many of the tools for dealing with a special needs child are appropriate for my role as an Alzheimer’s caregiver. The passage above relates to the need for a support system.

As a mother of three girls, I’ve often sought the advice and support of other women to guide me through my journey. I’ve belonged to moms’ groups, church groups and book groups. The birth of my first daughter was unexpectedly complicated and required three exhausting weeks in Neonatal Intensive Care. As soon as she was freed from her oxygen tank, I bundled her in a sling and rode two busses to reach the closest La Leche League meeting. The meetings were always a place of sharing and of connection. We were there to listen and learn and try to understand. Not just to understand each other, but to grow in understanding of ourselves.

As humans, we need to feel we belong somewhere. As a young mom, I needed to feel connected to other moms, particularly those who were determined to breastfeed despite any obstacles in our way. We needed to be surrounded by others who “got it.” Women who would listen to our frustrations, but support us in our decision to stick with it.

Today, my Alzheimer’s caregiver support group is just as necessary. We all “get it,” which is an enormous relief. The stress of caregiving makes you feel like you’re going crazy. It’s easy to become isolated and to feel helpless and alone. In a group, members can express their fears and frustrations as well as the positives, while offering strength and sympathy. We gain perspective on our own situations when we realize that others are having similar experiences. The group can help you see when you’re collapsing on the inside like that jack-o’-lantern, help you identify resources and suggest when you might need more help than the group can provide.

Non-caregivers often don’t understand, and their comments, no matter how well-intentioned, can be useless, or damaging. “Wow, that’s so hard. I can’t imagine doing that. You’re amazing to take that on.” Being praised as a martyr for taking responsibility for my mom’s care isn’t helpful. Instead it feels like a barely veiled, “Oh my God, I am so glad it’s not me.” Sometimes, that’s exactly what people say.

There are often new folks at our group, in different phases of caregiving. Our family members may all be in different stages, but we can nod or be comforted by the knowing nods of others. We belong. We are normal. People drift in and out, bring a partner or a sibling or come to rant about the lack of support provided by siblings. Over time, we know the back-story of these caregivers’ journeys, we connect and can hold a quiet space for them; we see our own fears and frustrations in them, we laugh together and we feel less alone.

Are you collapsing on the inside? Is it time you joined a support group?

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Real Women Speak shares the voices of Oregon women who are struggling, soaring, muddling through and motivated to move forward.

Inspired by  Decide.Create.Share, this blog chronicles stories from lighthearted happenings to questions of fortitude. From life-altering changes to simple anecdotes, our shared narratives serve to inspire, guide, and connect us.

Every woman has a voice. AARP Oregon seeks to amplify them.

About our lead blogger: Hello, my name is  Heather Lee Leap. My experience as a wife, mother, and caregiver of a family member with Alzheimer’s continues to influence my work as a freelance writer. With a passion for health, wellness, and the myriad issues confronting families today, I’m pleased to join AARP Oregon and Real Women Speak to help end the silence that can isolate us as we navigate life’s challenges.