The Carefullist is Actually a Love Story

It's interesting how a journey can blend over the years. Depending on which member of the family you ask, you'll probably get a different year when we first noticed something was wrong. Official diagnosis didn't occur until 2015 even though we suspected for several years prior, so we'll start there. My mom had Alzheimer's Disease. My dad was her primary caregiver and my sister moved closer to serve as a local backup. I lived two hours away and was desperate to help.

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In the earlier stages of the disease, I would shop for clothing on my lunch "break". It was as convenient as it could've been- a store for my mom was across the street from a store where I bought clothing for my kids; all of them changing sizes every so often as the kids grew and my mom lost weight.

 

With young kids at home and both of us in our thirties, my sister and I were the quintessential sandwich generation caregivers. In fact, our grandmother and great aunt were also part of our caregiving equation so for those of you keeping track, this was a four generation deal. My mom was an only child and her aunt never had children, so their care also fell to my dad and, subsequently, we helped him in mom's stead.

 

I called every day during my commute home from work; of course, this was nothing new. I did that for years. I don't remember the last time we spoke on the phone, but I do remember the progression of our conversations becoming more difficult. At first it was repeating stories. Then it was my dad having to show her my picture so she knew who she was talking with. She began to stutter as her speech diminished and it got to the point where she would forget what she was trying to say before the word finally came out. Somewhere in the stuttering phase was our last phone call. It was at this time that we began to need other resources.

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Since I was far away, I poured my time and energy into being the one to get things- using my network to find someone to shovel the walks and parking area, finding retired nurses who might be interested in using their skills and experience to provide trusted respite care, looking (unsuccessfully) for a hairdresser who would come to the house to give her a haircut. It was during these times when I realized just how hard it is to find what you need and help you can trust.

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My dad continued to be her primary caregiver throughout the rest of her life. He was diligent about finding things that worked for her; everything from hygiene to feeding to clothing to medication and safety. She was able to stay at home because of the care he and my sister provided, along with the help of an amazing hospice team the final three years. That's right. Three years. She passed away in September of 2023.

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We cared for my mom the way she always cared for us. It was the very least we could do. They say grief is love with nowhere to go. The Carefullist is part of our family's love story- a way to stay connected to my mom even though she’s no longer here. Above everything else, my mom taught me to invest my time and energy into doing for others.

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Everyone who finds themselves in the role of caregiver, as someone else’s “person”, deserves to have somewhere to turn that makes the journey go just a little bit smoother, feel a little less daunting and, hopefully, a whole lot less lonely. The Carefullist was born out of our needs as my mom's caregivers and it will continue in her spirit to help people who are caring for those they love.

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Katie Kristofic

Founder, The Carefullist