By Rosanne Corcoran
What struck me when I became a primary caregiver were the overwhelming feelings of isolation and confusion with no map to a nonexistent system of care. I lived in a house with my husband, my children and my mother and still felt alone. My thoughts kept me up at night: How am I going to do this? How can I help my mother and still be present for my children and husband? How can I manage all of this when I don’t even know what this is?
I made it my quest to find every bit of information I could get access to about dementia, and while there are millions of articles and reports none of them helped me on a personal level. None of them told me that what I was feeling was perfectly normal, and honestly, how could it not be normal? My entire world, and that of my family’s, had been turned upside down, and on top of it all, my mother had this progressive, fatal, neurological disease that had no treatment and no cure. I didn’t even know how long it would be before it claimed her life. What was I supposed to do now?
The most important information I found was from other caregivers. The ones who had been there, done that, and survived. It may not have been what I wanted to see. but it helped me immensely because I knew I was not alone and, hey, if they could survive caregiving, maybe I could too.
With that in mind, mid-way through my third year of in-home caregiving I started searching for support groups and happened to find Daughterhood.org. In an introduction video by founder Anne Tumlinson, she said, “we don’t expect daughterhood, it’s not like all the other daughters in your neighborhood are getting their parents together for playdates,” and I thought wow, that was clever, and it resonated with me. I learned that they sponsor regional support groups, referred to as Circles, and when there wasn’t one in my area, I inquired about starting one, which I did in January 2019. It was after a few months of sharing and speaking with other caregivers that I realized the scope and depth of the challenges we were all facing. I approached Anne with the podcast concept for Daughterhood, The Podcast where I could interview experts in differing fields and present that information to the harried caregiver who is at home, at their wits end, and looking for practical information. The podcast premiered in November 2019.
The following summer I decided to start my blog, not as a podcast host, but as my own personal perspective of the journey I continued to be on. Hey Roe: Caregiver Information, Inspiration & A Little Company is more personal because it’s my thoughts, emotions and feelings on paper. It’s me being me, not an interviewer, a daughter, a mother, a wife. I don’t sugarcoat my feelings, dark or light, because that doesn’t help anyone. If my writing reaches one person and makes them feel like they are not alone that would make me happy. If it makes them realize they are not the only one who has ever felt this way or thought these things they would never say out loud, or if they’re desperately trying to find something in the middle of the night to give them hope or comfort and read something I wrote and it resonates with them, that will make me feel like I’m paying it forward.
The other thing I realized is that, as much as I am fiercely protective of my mother and her legacy, the only way things will change when it comes to caregiving, and especially the stigma of dementia, is for those of us who are caring to share our stories. To use our experiences to change the perspective of what dementia is and what it isn’t. How these are not simply “memory issues” but the complete and utter deterioration of the physical brain.
That is why I am speaking up. That is why I will share what it was like to watch this disease take my mother away and how it changed me forever. There is a new chapter to be written now that mom has passed – my new role “after caregiving” and how to navigate through the grief and emptiness that is left while the rest of the world continued to move forward during my caregiving journey.
About the Author
Rosanne Corcoran is an in-home, primary, sandwich caregiver and Daughterhood Circle Leader. Leveraging her skills from a bachelor’s degree in English Communications, she created Daughterhood, The Podcast to bring her empathetic view of caregiving, from a first-person perspective, to help others navigate these uncharted, disorienting and tumultuous waters. She also blogs her story at Hey Roe.
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