Growing up when dad has dementia: Why I Walk

By: Grace Lilje

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Nolan and Grace with their parents

It was in the Spring of 2010 when my dad, my older brother Nolan, and I piled into our car for a road trip that would forever change our lives.  My dad, Bill, who worked as a wheat farmer, had been exhibiting some uncharacteristic behaviors and patterns that my mom had recently noticed. He was having difficulty planning in his job and trouble remembering where he placed items, like his coffee cup. After this visit to a doctor’s office for a brain scan and a couple doctors later, he was diagnosed with early-onset Alzheimer’s disease at age 54, and was also later diagnosed with frontotemporal dementia.  I was only 10 years old, Nolan was 13.

Prior to my dad’s diagnosis, he was the operator of our family farm, an active member of our community, a dedicated husband and father, and a very competent and sharp individual. He volunteered at our elementary school, the local boy scout troop, and was involved in our church. My dad was also very involved with Nolan and my youth sports teams, coaching for years. 

After my dad’s diagnosis, he eventually had to retire from farming and his countless volunteer commitments. Contrary to many people’s perception of the disease, memory was not the only thing that my dad struggled with. He began to experience extreme difficulty with multi-step processes. Whether it was creating a timeframe and schedule for farming or simply heating something up in the microwave, these tasks required logical and step-by-step thinking that he could no longer perform. He eventually began to lose basic functions and abilities such as driving, writing, and had trouble speaking. He even had difficulty hearing and lost a significant part of his sense of taste so anything my mom cooked for dinner tasted good!

It was extraordinarily difficult to watch him steadily decline in his cognitive abilities. It was brutal to watch him struggle with such simple tasks that we take for granted. It was even something he could have done a month ago but had since lost the ability. 

I have a couple of distinct memories that made his struggle with Alzheimer’s evident:

We were in our manual pickup truck and my dad was driving. We ended up getting stuck on a hill and we couldn’t work our way back up the hill. My dad kept trying and trying but it was clear that he was struggling and losing the ability to drive. I was too young to drive, and couldn’t be of any help either. In this moment, we were both completely helpless. My dad couldn’t complete a simple task that he had done for years. He knew that he had done it a thousand times before and was frustrated with himself he couldn’t get it this time. I was helpless too. I couldn’t help him at all and was confused why and what this disease was doing to him.

IMG_3431.JPG I think that this serves as an accurate representation of Alzheimer’s disease as a whole. Everyone involved feels completely helpless. There’s nothing that can be done on anybody’s part.

Throughout my dad’s entire Alzheimer’s journey, our mom served as his primary caregiver while working full-time and raising us kids. Especially, as the disease progressed, he began to require an extensive amount of care. He needed assistance with basic functions such as eating, dressing, and bathing. From a caretaker’s standpoint, dementia can be extremely draining, time consuming, and emotionally exhausting. Our mom exhibited the utmost patience, love, and compassion when caring for my dad at some of his most vulnerable moments. Eventually, my mom had to move him into an assisted-living facility after his care became too demanding and required a professional medical staff. 

While he was at this care unit, I visited him as often as I could. I thought that each visit would get easier, but it didn’t. Seeing my dad at the facility, was not the same dad that I remembered and known all my life. The one I remembered was the dad who never said no to a game of catch, the dad who was a jokester, and the dad who came home with his hands black from grease after a long day’s work. 

We were lucky as a family that excluding his time at the assisted living facility, Alzheimer’s did not strip him of his gentle, funny, and loving personality that we all knew. For those families who are facing Alzheimer’s disease, we would encourage you to find the things that the individual with Alzheimer’s CAN DO not what they can’t. 

My dad’s time with Alzheimer’s are perhaps where some of our most fond memories lay. I can’t really remember my dad without Alzheimer’s, so I am very lucky that my dad was in such good spirits and wanted to stay active after his diagnosis.

 One thing that my dad could still do was make a mean PB & J sandwich. My mom would have him make us sandwiches when we came home for lunch. He couldn’t reason the proper number of sandwiches to make, so he would always end up making an entire loaf or two worth of sandwiches. We started to call it “the stack”. We would say “the stack is back.” This was something that my dad could do and something so that he felt he was still a helpful and contributing member of the family. In an incident like this, it was something we could all find humor in and my dad would go along with too.

After about a ten-year battle with Alzheimer’s, my dad passed away in the spring of 2018. Even though it was a gradual loss as the disease progressed, his death was still very impactful. Our dad’s journey with Alzheimer’s has prompted my brother and I to join the fight and volunteer with the Walk to End Alzheimer’s. Unfortunately, it is too late for our dad, but that doesn’t mean his story and impact can’t live on. We are fighting for everyone else who has been affected by this disease until we live in a world without Alzheimer’s.

Grace and Nolan’s Walk to End Alzheimer’s  team is called Bill’s Baseball Team. They will be walking at the Spokane County Walk on Oct. 5, 2019. Learn more about the Walk to End Alzheimer’s here.


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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

 

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