By: Kaitlyn Johnson

Growing up, I was always “Grandma’s Girl.” I spent countless hours eating Push-Pops on the living room floor of her apartment, watching Disney movies on VHS with the boxy old TV she refused to replace and baking with her before I could even reach the kitchen counter. I am infamous among my immediate family for constantly having my nose in a book, a trait my grandma instilled in me with walks through Barnes & Noble before I even knew how to read. She adored me, and I loved her more than I knew how to express.

I’m grateful I was old enough at that period of my grandma’s life to develop those kinds of memories with her. When I was five years old, she was diagnosed with early-onset Alzheimer’s disease. At first, I didn’t quite understand that the diagnosis meant my best friend was already on her way out of my life, but it quickly became apparent to me that something was wrong. It started with the keys to her apartment, which never seemed to be where she remembered them. After that, she began to have difficulty using her cell phone, and from there everything just seemed to spiral. I was eight years old when she moved into her first assisted living facility. She would frequently call us in distress and claim she had lost something or was in some sort of trouble; but more often than not, the staff at the facility would debunk her claims. 

There was one perk to this situation; a library was located less than a block away. My favorite past time became walking my grandma across the lawn behind her home and wandering through aisles of floor-to-ceiling shelves with her. I made the choice to ignore her worsening condition as long as possible, even as our library time became more centered around me trying to keep her as close as possible so she wouldn’t get lost and become panicked. As the symptoms of her disease progressed, my mom was forced to gradually limit my grandma’s freedoms in order to keep her safe, and eventually we moved her into a gated memory care community.

This was when I was finally forced to acknowledge the raw, heart-wrenching reality of living with a loved one who has Alzheimer’s. My grandma began to have a more difficult time performing day-to-day functions and her condition rapidly deteriorated. She could no longer read (although she still insisted on being taken to Target to buy books), her hands were usually rocked by tremors and she could no longer speak without slurring her words. Her short and long-term memory began to blur together, and she began to think of her own daughter — my mom — as her own mother. There were even a few times when she called my mother “mom” and called me by my mom’s name. We had to be more careful when we took her out into the community; her balance began to suffer and she required more help to do simple tasks like getting in or out of the car and standing up from a sitting position. My grandma was fading away right before my eyes, and I couldn’t do anything to stop it.

As her independence became further compromised by the later stages of the disease, my mom decided an adult family home with a more intimate setting would make my grandma more comfortable when her final days did arrive. It was in this time that the most awful symptoms of Alzheimer’s set in. There were days my mom, brother and I would come to visit and she was unable to remember who we were. She started to forget our names and confuse our identities with other family members. Throughout her life, my grandma had been an incredibly kind, patient person, but now she became combative with her caregivers. Her ability to speak became more and more impeded until she only communicated in monosyllabic answers to simple questions or garbled sentences that we struggled to translate into phrases that made any sort of sense.

I struggled to believe that this shell of a person was the vibrant, lively woman who was such a central figure in my early childhood. This is the unique reality of Alzheimer’s disease: having everything that makes a person who they are stripped away until only a slim fraction of themselves remains. The trick to making it through those hardest final days is to find that fraction and hang onto it with everything you have. As my grandma deteriorated further, eventually becoming wheelchair bound and becoming unable to eat solid foods, I clung to the special bond we always held between us. When I was young, we always used to jokingly wink back and forth to each other, creating a sort of secret language with our eyes to annoy my mom. As my grandma edged toward her final days, I found her once or twice winking at me and immediately breaking into a quiet smile, despite the fact that most days, she couldn’t even remember or speak my name. Our bond was still stronger than ever on September 22, 2016, the day she passed away. She was 69 years old and I was 13.

Over the last two (almost three) years since my grandma’s passing, I have come to believe more and more that she is still looking out for me, just as she did when I was little. This is why my mom and I decided to join our local Walk to End Alzheimer’s; because my grandma shouldn’t be watching over me from somewhere we can’t see, she should still be here right beside us. And although I might not be able to bring her back, I’m going to throw everything I have at making her proud, wherever she is watching me from, and creating a day when no one has to go through what my family and I did.

Kaitlyn’s Walk to End Alzheimer’s team will be walking at the Snohomish County Walk to End Alzheimer’s on Sept. 7. in Everett. Learn more about the Walk to End Alzheimer’s here.

Held annually in more than 600 communities nationwide, the Alzheimer’s Association Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease! Find your Walk and start your team at alz.org/walk.