A personal message on dementia

Posted on Apr 6, 2016 by

By Monica Coenen

Monica Coenen is a soprano in newVoices, a member of our chorus council, and a freelance writer. She shares her thoughts on the upcoming concert “Wanting Memories.” 

When you’re 5 years old and your Grandma is helping you brush your teeth and get ready for bed, you never expect that in about 20 years, you will be helping your Mom brush Grandma’s teeth and get her ready for bed. And that she won’t really know who you are. And sometimes she’ll be scared because she won’t understand why you’re wheeling her into the other room and changing her clothing. And sometimes she’ll fight it, try to push your hands away because she doesn’t want to do what you want her to do, which is often what she needs to do. Caretakers are truly saints among us.

It started with memory lapses in her 70s, maybe earlier. Forgotten words, forgetting what she went into a room for–and it progressed steadily, sometimes slow, sometimes alarmingly quickly.

When Grandma Joyce and Grandpa Wayne moved in with my parents, they were both starting to suffer from dementia and it was no longer safe for them to live alone. They struggled with what day or time it was, preparing meals, remembering names, remembering words in conversation. Grandma’s dementia was more advanced, and within a few years she was no longer mobile and struggled to verbalize. Many of her words were nonsense words. I will never forget the time she was irritated at my Dad for some reason and called him a “Groaner Coaster!” We have no idea what she actually meant to call him, but the inflection was pretty clear. You have to laugh at things like this, because otherwise you’d cry.

Grandma had problems with names for a long time, except for her sweetheart, Wayne, with whom she enjoyed nearly 65 years of marriage. She would ask for him whenever he wasn’t in the room. His was the last name she lost. I always had the impression that she understood we were related or connected somehow, but she didn’t know my name the last several years. When she called her caretaker, her daughter Marie, by name, she often confused her for one of her own big sisters. My mom took it as a compliment, because Joyce’s sisters always looked out for her and took care of her when she was young.

One of the last intelligible things Grandma said directly to me, as she patted my hand while I helped tuck her in for the night was, “You’re a good grand… woman.” The words weren’t quite perfect, but I knew what she meant.

She was quick to smile and laugh up until the very end. She loved babies. She was happiest when someone would sit next to her and hold her hand, and she had a doll that gave her great comfort. She would hold that doll all day long like it was one of her babies or grandbabies or great-grandbabies. I sang at her funeral last summer with my cousin Wayne. Our cousins Grace and Eva and our Aunt Amy joined in. I still miss her. But I started missing her years before she passed away.

Grandpa misses her too, when he remembers that she’s gone. He forgets sometimes, and then he remembers and the pain is fresh to him like it happened yesterday instead of almost a year ago. My mom read him this quote she found the other day, and they cried together “I can never lose one who I have loved unto the end; one to whom my soul cleaves so firmly that it can never be separated, does not go away but only goes before. – St. Bernard of Clairvaux.”

Grandpa’s memory has many holes, but he does remember songs. Grandpa was always full of music – whistling when he woke

up with the sun, humming, singing his favorite old tunes and jingles. I heard stories that he used to have a bird friend that would greet him on the telephone wire every morning, where they would whistle back and forth to each other. “Let Me Call you Sweetheart,” “You Are My Sunshine,” and “My Bonnie Lies Over the Ocean,” were sung to his wife and taught to his children and grandchildren. He even occasionally remembers and sings songs in Belgian from his childhood. He only used to break out the Belgian when he wanted to use a curse word without Grandma knowing it and getting mad at him, but as other things slip away, more memories resurface. He misses Joyce so much.

Dementia is heartbreaking. Sufferers also experience anxiety, depression, and fear, and changes in personality that can be very upsetting or frustrating. But the beautiful souls locked inside those deteriorating minds and bodies are the same people you remember. When they are acting defiant or feeling depressed, hold their hand, smile, and share some memories and music.

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