Meet Rachel Hiles, “Taking Care of Grandma” blogger

Reprinted with permission from AlzAuthors.com

By Rachel Hiles

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.

Connect with Rachel:

https://takingcareofgrandma.com

https://facebook.com/takingcareofgrandma/

https://twitter.com/takingcareofgma

https://www.caregiving.com/members/rkhiles/

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Welcome Lickety Glitz, blogger of “Stumped Town Dementia”

Reprinted with permission from AlzAuthors.com

Stumped Town Dementia: Punching Dementia in the face one day at a time.

By Lickety Glitz

I started…… to worry that Mom’s behavior wasn’t old age quirky-ness, but possibly a much more serious problem.

I started…… a new career that required relocated away from family, friends, and the region I loved best.

I started…… to consult with Dad on my visits home about how long we thought it might be before he needed me back permanently to support him in Mom’s care. Another year? Three? Five?

I stopped…… breathing when the ER doctor announced on conference call that Dad had stage 4 pancreatic cancer. I could tell that those who were there in-person had stopped breathing too.

I started…… sharing 24/7 care for Mom with my sister when Dad died three weeks later.

I started…… blogging about our dementia adventures a year later as a way to keep far off friends and family engaged in Mom’s life. I’ve been writing for over a year now, and

…… I’ve started to realize it’s so much more.

It’s a lifeline for me. An umbilical cord to a not-so-distant universe of word-weaving creativity; now a tiny galaxy of curling and curving locution that tethers me to the world of my present.

It’s a permanent record of a journey I don’t want to forget. An autobiography of dementia certainties: misplaced items, misplaced poop, mismanaged emotions. A sweeping saga of dementia unknowns; tremendous courage, epic failures, colossal comedies.

It’s a connection to a massive universe of dementia care givers who see their journey mirrored in ours. It’s a connection to a smaller cosmos of family and friends who can’t always be with their beloved Gloria but want to stay informed. It’s a connection to my sister, The Other Girl, a relationship sometimes fragile and strained, but united in a never-questioned bond of love for our mother.

And lastly, it’s a connection to myself; my devastating defeats, my soaring successes, my inherited joy of hilarity in the tragically absurd – a gift from Mom and Dad who shared the same comedic sensibilities. When I write a post, whether dire and dark or laugh-out-loud light, I have to relive my emotions, examine my responses, assess my behavior with unflinching honesty. If I shrink from that often-painful task, then I am doing everyone who follows our adventures a disservice in telling a dishonest tale.

A year ago, I sat down at my computer to inform family and friends of Mom’s dementia progression. A year later I rise in realization that I’m actually telling myself about myself.

About the Author

Stumped Town Dementia is a personal blog chronicling the dementia adventures of Girl and The Other Girl, sharing hilarious, heartbreaking, bittersweet and courageous moments of life with our Mom who has vascular dementia. We celebrate the insanity and relish the laughter of this long, strange journey. It helps us make it through the days when there are no smiles to be had.

Stumped Town Dementia has been featured on The Caregiver Space, Family Caregivers Alliance, Being Patient and Alzheimer’s Society UK.

Lickety Glitz has been a former just about everything from non-profits arts administrator to cabaret performer to post-production professional to Crappiest Daughter of the Year award winner about 40+ years in a row. She recently broke that winning streak by stepping up to the plate, hand-in-hand with The Other Girl, to provide their dementia mom with the best end-of-life care possible.

Social media links:

Website: https://www.stumpedtowndementia.com/

FB: https://www.facebook.com/StumpedTownDementiaPDX/

Twitter: @LicketyGlitz

Email: licketyglitz@stumpedtowndementia.com

Instagram: stumpedtowndementia

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