Reprinted with permission from AlzAuthors.com
When I became my grandma’s caregiver, I searched desperately for support.
No, not home-delivered meals or adult daycare.
Not home care agencies or government programs.
No, I was on a relentless pursuit for the others.
You see, when we are in the thick of caregiving, there are times when we feel oh so alone. Even if we have watched people taking care of their relatives while growing up, or hear about it on TV, we are never fully prepared for caregiving until it actually happens to us. And then we are islands.
When you realize for the first time your loved one might have dementia, it feels like the ocean is coming to swallow up your island.
This feeling of aloneness is a feeling I have grown quite accustomed to as an only child. As an only child caring for an only child, I realized just how small our tiny little island was and this gnawing only grew stronger.
The people I thought would come through for us never showed up. Some of these same people were the ones who were telling me I should give up and look at placing Grandma in a facility, I said, “No, she can stay at home.” In spite of it all, my primary motivation is to see this through to the very end, making sure she has a good life every step of the way.
I figured there had to be some others like us. Others not just caring for their loved ones at home, but proactively looking for ways to keep them there. Others that could find the humor in caregiving mishaps, instead of being so freaked out by them they never even try. Others that are willing to make sacrifices to help their loved one, who after all, sacrificed greatly for them. Others that are concerned with respecting their elders and values of family and community (yes, they still do exist).
Since I had my own social struggles, I didn’t know anyone personally my age, let alone someone my age who was also caring for a loved one, so I started searching.
In my search for the others, TakingCareofGrandma.comwas born. It was my desperate attempt to light the branches on the beach and send out smoke signals to other people like me who are caring for an aging relative. I thought that if I started blogging about my caregiving adventure, the others—granddaughters, nephews, nieces and neighbors, people searching for the same things I was searching for—would find me.
Be careful what you wish for, they say. Out of nowhere, the othersstarted popping up left and right. In my inbox. On Twitter. At Grandma’s high school class reunion. At conferences.
Thanks to my smoke signals, the others are showing up all the time.
Ultimately, I hope that my blog is more than just an endearing story from an ephemeral point in one person’s life. I hope that my readers of TakingCareofGrandma.comfind my tips and tricks, videos and silly stories helpful, and that they spark ideas of how they might be able to support a loved one they are caring for. When I told my grandma I wanted to start my blog, I convinced her by telling her we were doing the world a service—after all, it is up to us to show the world how it’s done. I never looked back.
Even though I started TakingCareofGrandma.comwith the intention of finding, helping, and inspiring others, it is seriously one of the greatest gifts I ever gave to myself. Starting this blog has not only been a source of catharsis for me, it has also put opportunities in front of me and brought people into my life in a way I never thought was possible.
My advice out there to anyone who is currently caring for a loved one with Alzheimer’s or dementia: Never lose hope of finding the others. It is when you least expect it and in our darkest moments that they come into the light.
About the Author
Rachel Hiles is a 30-something aspiring local celebrity do-gooder in Kansas City. She is a proud graduate of the UMKC Bloch school, where she obtained her Masters of Public Administration with an emphasis in nonprofit management. She worked in the developmental disabilities field in a variety of roles for over 13 years. Most recently, she ventured down the path to self-employment as a graphic, web and media designer so she could have flexibility in her role as primary caregiver to her grandma, Barbara.
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