My Journey Caregiving for My Mom With Alzheimer's, and The Walk To End Alzheimer's

 
Amy Elkins,
March 17, 2020 | in Community Stories, Caregiver's Corner, Life Changes & Sleep, New Diagnosis of Alzheimer's

 
Editorial Review Phoebe Stoye, A.B. in Neurobiology, Harvard College
Caretalk

Amy Elkins is used to being in control. As the vice president of a medical software company, her employer keeps her busy overseeing the development team and solutions management team. While the 47-year-old lives in Palm Harbor, Florida, she flies all over the country for work.

But even with Amy's chaotic work schedule, she loves making time to play with her nine-year-old son and take her boat out on the water. In fact, she considers her boat her happy place, which she took advantage of after her mother's Alzheimer's diagnosis in 2016. While at first, Amy felt like the whole world was turned upside down, she quickly adjusted to the daily uncertainties of this crippling disease. Until the end of her mother's life, Amy did all she could for her cool, amazing mom.

Now, Amy pays it forward by acting as a team captain for the Pinellas County Walk to End Alzheimer's. In her latest venture, she and her sisters—the Elkins sisters—have joined forces with the Kapusinsky sisters to walk under the team name, Silly Sisters. Through shared heartache, these women have formed a strong bond and are fighting to find a cure for Alzhiemer's. This is Amy's story.

Tell us about your experience receiving the diagnosis of Alzheimer's for you or your loved one. What have you learned or wish you knew?

I would say the biggest advice that I give to folks is to not ignore the early warning signs and brush it off as just old age. Really, really pay attention to it and have a conversation with your loved one's doctor. You're not supposed to have regrets and you're not supposed to look back, but I wish I didn't just brush it off as old age, because there are things that doctors can do pretty early on to help.

The other thing is I learned to journal. Knowing that I'm a mom now, I made sure that I journaled about how I advocated for my mom and how I would want the same for me if this were to ever happen to me. What would I want my son to know? So I learned to journal a lot, so that if, God forbid, it ever happened to me, he'll understand how I advocated for her and maybe he could do the same for me.

Family caregiving for Alzheimer's patient

(Editor's note: if you want inspiration for activities to do with your loved one with Alzheimer's, check out this Caretalk article.)

What was it like adapting to your or your loved one's condition?

It was funny, one of the aides at her home joked that "Mama don't play." They learned when I walked in the door, if there was anything going on with my mom that didn't look okay through my eyes, they all jumped when I walked in the door. So I was firm, but they always understood because it was from a very loving place. Not to say anybody's coming from a bad place, they're not. But you also learn how your loved one is doing at different times of the day.

How would you like to remember your loved one?

For me, with my job, I'm always traveling–and I actually still miss that to this day–I used to call her and she'd ask, "So are you going to the airport or from the airport?" And it didn't matter if I was going to the airport at six o'clock in the morning, or coming home from the airport at 10 o'clock at night. She was my airport phone call to and from the airport. So I certainly cherish what we so lovingly called the airport phone call.

Do you feel like this experience has made you a stronger person?

110%. I personally feel this disease is worse than any other disease out there, especially because it doesn't have a cure. It has made me fight harder for a cure. I am proud to be a team captain of a walk team every year. I always strive to be the highest fundraising team. I now sit on the committee for our local Alzheimer's Walk everywhere I go. I follow everything that's going on in Capitol Hill. We have some exciting things happening right now. I'm familiar with some trial medications, so I'm watching that quite closely. So not just stronger—but smarter and more educated about the disease overall and what I can do to help.

(Editor's note: Learn how you can get involved in Alzheimer's Disease by participating in a Walk to End Alzheimer's, raising awareness, participating in research, and more).

Author with mother"

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