By Katie Spears: Walk to End Alzheimer’s Participant
It felt like dementia came out of nowhere and hit both sides of my family within the span of 10 years.
My paternal grandmother was the first Japanese war bride to move to Blount County, and she and my grandfather had a love that many people long for. I remember Mamaw Peggy cooking traditional Japanese dishes, trying to teach me Japanese at a young age, and being my constant companion as a child. After my grandmother was diagnosed in 2005 with Alzheimer’s Disease, my grandfather became her full-time caregiver. He made sure to take her to all of her appointments, research the latest developments on Alzheimer’s Disease, and would always encourage me to go into research to help find a cure.
My maternal grandfather has always been very close with his brothers. I remember how difficult it was watching him cope when one of his brothers, Larry, was diagnosed with PTSD in 2009. Larry was later diagnosed with dementia in 2013, and every time Papaw would talk about Larry, true heartbreak would come across my Papaw’s face. Larry and Papaw were always close, and it felt like this disease was, in a sense, making them strangers.
My momma was always my number one supporter as far back as I can remember. Being an only child comes with many positives and negatives, but one positive was the bond she and I shared. She worked as the Probate Clerk for Blount County for over 20 years with a set routine and schedule. I began to notice her behavior changing even though I was submersed in my senior year of college—there was something off about her. My grandmother, her mother, and I noticed it was taking Momma longer and longer to get home after work. Eventually, we learned she started needing to use MapQuest to find her way home. A few months before college graduation, I received a phone call that she had been fired from her job due to her forgetfulness, punctuality issues, and lack of thoroughness. Momma had just celebrated her 50th birthday; therefore, she was too young for disability, but she was over the monetary threshold for Medicaid. We were completely lost on what to do.
The people in our family’s community came through for us in a way that still amazes me. Our church family offered resources, connections, and information they had learned from their own experiences with dementia. Family and friends stopped by to provide respite or medical information, and my employer put me in contact with multiple neurologists and providers to get the best care possible for Momma. We learned that my mom had Frontotemporal dementia (FTD), a type of dementia that is usually seen in younger adults compared to Alzheimer’s Disease and targets the frontal and temporal lobes of the brain. Unfortunately, due to our financial situation, we were not able to utilize the neurologists and specialists as much as we would’ve liked, but the doctors gave us a number of useful resources.
I applied to the School of Public Health at UW Seattle in 2017, and I learned that I had been accepted into the class of 2018 soon after. Momma had slowly been getting worse to the point of my grandmother not being able to get sleep because my mom was wandering throughout the house at night. She’d turn the oven on and try to get out of the house. At this time, my mom was still somewhat verbal, but she could no longer write anything down—it came out as lines and dots. She would stare at me and look down at her piece of paper in a way that still devastates me. She wanted so badly to communicate with not only me but anyone. She would go back and sit down, and in less than five minutes, she would repeat this process. The night before I was supposed to leave and head back to Seattle, I went to help her into bed and make sure she was comfortable. As I was turning the light off, I said, “I love you, Momma,” and she looked up at me and said, “I love you.” I did not know at the time, but this would be the last time I heard my mom’s voice because she no longer spoke to anyone after that night. I will always cherish that memory and carry it with me.
Helping back Home
My mom’s FTD was getting progressively worse, so I made the executive decision to defer my acceptance into the MPH program until 2019, and I moved back to Tennessee in December of 2018. My mom’s aphasia, dysphagia, and muscle weakness throughout her body was continuing to worsen by the week. When she would try to walk, she would quickly fall down and into things, which was a hazard to not only herself but everyone around her. After a very bad fall and a night in the ER, my family and I were able to have palliative care and hospice come into our home and help with medication, bathing, and so much more.
In 2019 after battling Alzheimer’s Disease for 14 years, my Mamaw Peggy lost her battle in April, and my mom passed away in May after battling Frontotemporal dementia for five years. The following year, my great uncle Larry lost his battle with dementia.
Finding Support and Sharing Resources
One of the biggest struggles throughout this process was finding resources on what to do post-dementia diagnosis. There were so many hurdles, so much information, and so many new faces that came along after the dementia diagnosis that it was overwhelming. Living in a small town has its perks, but these areas do not have the resources like more urban areas do.
Dementia has affected my life by giving me a passion and drive to help alleviate this stress expressed by families. I am currently working with Old Friends Club, which is an adult day social respite place for individuals with cognitive disorders and their families. One of my long-term goals is to change the way dementia is handled post-diagnosis, especially in small towns, so everyone is able to access and have these “big-city” resources.
Walking to End Alzheimer’s
By way of introduction, I first became involved with the Alzheimer’s Association in October 2020. I have since participated on the Seattle Walk Committee and have met some incredible people along the way! One of my favorite parts about the team is gearing up for Walk Day. I enjoy reconnecting with familiar faces, and I love meeting new ones each year. There are so many moving pieces, and it’s incredible when everything comes together on the day of the Walk.
Last year, in 2021, was the first Walk that I was able to participate in person, and it did not disappoint. There were so many people who showed up to support the cause, and I couldn’t have picked a better Walk team to share the experience with. This year, I will be participating in person on October 1st in Seattle and hope to make this Walk the best one yet.
I want people to know that the Alzheimer’s Association is not just for people diagnosed with Alzheimer’s. This nonprofit has so many resources that can help a family get started when a person is first diagnosed with dementia. There is a 24/7 care line that can help someone get a better idea of what to do and how to do it, which is sometimes the best way to start this journey. A dementia diagnosis is not a reason to give up on hope or life, but it helps when you have the support of a strong community around you during this time. It’s important to not isolate yourself or worry that you will be a burden to someone because we’re ultimately in this fight together. We’re better together, stronger together, and more driven together. My family was privileged to have the support of friends and family, but I understand and acknowledge there are families who are not as fortunate as mine. This motivates me and gives me hope that there will one day be this kind of support everywhere. Most importantly, it gives me hope there will one day be a cure for all dementias.
I’m originally from Maryville, Tennessee, a small town in the foothills of the Great Smoky Mountains. My family has lived there for generations and has seen the place evolve from a rural town into a growing city. After high school, I attended Maryville College, where I obtained my Bachelor of Arts in Biochemistry and minor in Philosophy. I moved to Seattle in 2016 and attended the University of Washington Seattle, where I received my MPH (Master in Public Health) during the COVID-19 pandemic. For my thesis, I wrote, “Best Kept Secret”: Perspectives From Adult Day Care Staff, which allowed me to interview three local adult day respite facilities and gain more knowledge on how beneficial these respite centers are to their communities.
Add Your Flower to the Fight
Join Katie at the Seattle Walk to End Alzheimer’s on October 1st at Seattle Center or find an upcoming walk near you at alzwa.org/walk.
Can’t join us for a walk? You can still help support the cause. You can donate to a walker, a walk team or the walk at https://act.alz.org/site/TR?fr_id=15961&pg=pfind.