November is Caregivers Month so I found it only fitting to have my first guest blog from a caregiver herself. My friend, Jenny Gore Dwyer cared for her husband, Pat, before he passed 2 years ago. Jenny shares my passion in fighting this horrible disease as she knows all too well its effects.
Augie and Lynne, thanks for the opportunity to “guest” blog. You know, it’s kinda funny that you asked me to do this…when everything started popping up about Caregivers month, it made me remember that I would get a few notes from people, with positive affirmations, and thanks for taking care of Pat. Now that I’m not “officially” a caregiver anymore it kinda made me sad. Not that I wasn’t getting little notes anymore, but that I wasn’t a caregiver anymore….ALS comes blaring loudly into your life, and on the flip side, when it’s done, it’s done…gone, just gone.
People who live with ALS make big decisions everyday about how they want to live with their disease. Pat had a bottom line what he would live with and what he wouldn’t. The day came where he decided he was done. As caregivers, we try to support them as best we can. But, now two years later, I realize I didn’t fully understand the finality of his decision, and honestly, I really don’t think I ever will…while caregiving, and caregiving for your spouse especially, is the best job you will ever love and hate at the same time, when it’s over, it’s sad. Sad because you are missing the person and the amount of life and joy that filled up your day, because they were around.
But for me, I know Pat loved life. He loved everything about it. The way he lived his life with ALS was an inspiration to me, our kids, our family and friends. Granted, some days those “inspirations” came through loud, grumpy, angry and clear, but usually laughter won out at the end of the day. Now that my days are no longer filled with caregiving, I still use Pat’s love of life, to help guide me through mine. I’m inspired when I find that simple joy for the day…it can be as simple as a lovely sunrise, the smell of the ocean, that first sip of coffee in the morning, the sound of my kid’s voice on the phone, or eating a box of Good & Plenty candy.
To all my fellow caregivers, present and past, big hugs to all and thank you for all you do, everyday. You inspire me.
-Jenny Gore Dwyer