Locked Up In Memory

By Madelyn Miller

Bill struggled holding conversations; he knew something in his body was going on, and he was unable to control some of his thoughts. He went to several doctors appointments in 2016, where he learned that he had suffered four to five mini-strokes. Further brain scans revealed that he had Frontal Lobe Dementia. With this diagnosis, my family and I knew there would be a severe decline in his health, and that he would struggle with the disease.

Over the first couple of years that he had dementia, only some minor changes were noticeable, but for the most part he still acted normally. Sometimes little things slipped his mind and he would get confused doing everyday tasks such as turning the wrong way while driving, and unknowingly changing conversation topics. He would also relive past memories and talk to me like I was in the past with him: he would explain his stories so vividly and with such clear detail as if it was the 1980s.

My grandpa was good at concealing his disease-strangers would not be able to tell that he was struggling with dementia. However, as the years progressed, major changes were noticeable: he got lost while driving; repeated the same sentences; and woke up regularly throughout the night, unable to describe and know what was going on.

My grandma provided full care for him, but didn't realize how much it affected her well-being. Since my grandpa woke up regularly throughout the night, she did not get enough sleep. My grandma would get frustrated with my grandpa because of his stubbornness when it came to things that he did not want to do-sometimes it would be simple things like sitting down to eat a meal. He progressed into the middle stages of dementia where someone had to watch him full time to make sure he was safe. If left alone, he would wander away, have an unexpected fall, or become incompetent when he needed to do something like use the bathroom.

My grandparents took a trip to Florida in December of 2019, and on their way home, my grandpa had a scare. They stopped at a hotel for the night, and my grandpa woke up during the middle of the night, and wandered off into someone else's hotel room leaving my grandma alone in their room. My grandma became scared with where he wandered off to because he was not beside her and she thought that she lost him. She later found him in a room down the hall whose door had been unlocked, asleep on the bed. After hearing about this I also became concerned, because if he left the hotel instead of going into a room down the hall, his safety would have been in danger.

As the disease progressed, some more issues happened like him wandering away from my grandma and becoming more stubborn on simple tasks like taking a shower, getting in the car, and going to bed. In November 2021, the family decided it would be best to move him into a memory care unit, since caring for him became too exhausting to handle all his needs. This broke my heart, because I know that once someone moves into a care facility, they are generally in the care facility until they die.

My grandpa was one of my biggest supporters when it came to my extracurricular activities. He came to almost all of my swim competitions, track meets, and cross-country races to cheer me on, and he also supported me when I played the French horn in middle school band. I will do the same for him throughout this hard time as I slowly watch dementia rob my grandpa of his well-being.

One thing that he has forgotten how to do since he has been in the facility is how to feed himself, so when I visit, I try to schedule it around one of his meal times so I can help him. He now has his meals pureed since it is harder for him as a dementia patient to swallow, otherwise it would be a choking hazard. He also lost the ability to walk, so he is either in his wheelchair or in his bed all the time. When I visit him, I try to make sure that he is comfortable and in little pain, because if I were in his situation, I would want someone to help me be more comfortable.

Although this has severely affected both his life and my life, I am grateful for all the memories that I have with him that I can look back on, before dementia took him away from me. My grandpa loved sailing: it was his everything. He competed in many races like the Mighty Mac race from Chicago to Mackinac. I remember going out for the afternoon to sail with my family, glancing over at him, and seeing a huge smile on his face. He also loved his cars. He had a Chevrolet Corvette, and an old 1965 Dodge Ram pickup truck-that were both red-he loved to drive them around town. I remember him picking me up from school in his Corvette and I felt like the coolest kid ever. We would always go get Dairy Queen for Blizzards. He always got butterscotch, his favorite, and I always got something with lots of chocolate. I remember spending the night over at my grandma and grandpa's house and in the morning he would always enjoy a cup of black coffee from the same mug, reading the jokes in the newspaper. He pointed out the jokes he thought were funny, and would have me read them. He also loved to travel. I remember vacationing to Puerto Rico together, and at dinner he would always order some type of seafood; most of the time it was fish tacos, he loved them.

This is not the way it should be. I should not have to visit my grandpa in a care facility and see him like this. He should be able to sail his boat whenever he wants to. He should be able to come to my sporting events and cheer me on. My grandpa should be able to celebrate the holidays with his family, not in his room at the memory care facility. He should be able to choose what he eats for his meals; it shouldn't have to be pureed to be considered safe for him to eat. He should be able to take vacations whenever he wants to with my grandma, and travel the world like he had planned to after he retired. This horrible disease has completely stripped my grandpa's whole personality sooner than what I had ever expected, but I am thankful for the memories I have with my grandpa before dementia took him from me, and had him locked up in his memory.

"Acknowledgements"

Thank you to my grandma and my grandpa, my mom, my workshop readers, and Keith Kroll. Without them, this memoir would have not been possible.

Biography

Madelyn Miller is a college student at Kalamazoo Valley Community College, who is also a senior at Paw Paw High School