Part of my experience in taking care of Grandma Lilly was collaboration with my family. We had four generations living under one roof from Grandma Lilly, all the way down to my children. This first spotlight will feature my daughter, Addie. She tells stories about what it was like to take care of Grandma Lilly.
**NOTE: Addie refers to Grandma Lilly as her Great Grandma Lilly throughout this piece, as that is her relationship to her. When she mentions her grandmother, she is referring to my mother-in-law who also lived with us.
I was closer to Great Grandma than a lot of my family. She had lived with my grandmother since I was about 5 and I stayed with them a lot when I was young. So I was around Great Grandma Lilly all the time when I was a kid.
She was a sweet old lady. She was funny, poignant about things. She never cursed and she was always particularly respectful of others. She was one of the kindest human beings I had ever met.
When it started
When her dementia started to show, I didn’t really understand it. My mom saw it right away, but I couldn’t. I remember one night we were playing dominoes and Great Grandma Lilly was telling us that we were playing the game wrong. I told her that she was wrong and we started to argue. My mom tried to stop me from engaging in the argument and I was confused. Great Grandma tried to set up the game and it hit her that she was setting it up incorrectly. That’s my first memory of dementia affecting my interactions with her. I learned that I had to let her figure things out rather than be the opposing force.
As it started to become more obvious, Great Grandma Lilly would curse more. And she would say things at inappropriate volumes in public. It was little things like that that I remember as I first started to notice that something was wrong.
Taking care of Great Grandma Lilly was never a question. It was something we were always going to do and I was always going to want to be a part of when it came.
My role
I helped take care of her a lot. Mostly I was the one that would help her get back to bed in the middle of the night. She would wake up twice a night, every night. I could hear the “click…click…click,” of her cane coming down the hallway. She would find me, shine her flashlight on me, and I would get up and help her back to bed.
It was important that she sleep at night and stay on a regular schedule. If I let her stay up, she would end up being tired all day, which would affect her mood and her schedule. Not to mention that if she stayed up long enough, she would end up at the bottom of the stairs yelling upstairs, “It’s time for breakfast!!” at 3 AM. Now everyone is awake and cranky.
But I admit, sometimes I would hide from Great Grandma Lilly at night when she was supposed to be asleep. In some cases, she would go back to sleep if she thought I was asleep or couldn’t find me. One time, I was hiding under a blanket and she ripped it off of me, and even opened my eye while I pretended to sleep! But she eventually believed I was sleeping and put the blanket back on me and went to bed.
Some days she struggled with dreams versus reality. She would wake up some days convinced that my grandma was trapped somewhere and we had to find her. Other times, she was convinced my brother was in the army.
The lesson
We were lucky to have each other. It’s exhausting to do that kind of work on your own. A lot of the work fell on my grandma, but we all pitched in to make sure Great Grandma Lilly was at her best. Some days, you just don’t want to have to keep strict. Sometimes you just don’t have the energy or will to do it on that particular hour or day. And that’s when we helped each other. Those were the days I helped Great Grandma Lilly take her meds or keep her away from the sweets in the kitchen. It brought us even closer together as a family.
Taking care of Great Grandma Lilly was never a question. It was something we were always going to do and I was always going to want to be a part of when it came.
People treat those with dementia as if they aren’t a person anymore. Like they are just these fragile bodies that barely contain a soul. People struggle with the idea that there is a person still in there. The same person that has always been there. It frustrated me that my cousins would look at Great Grandma Lilly as if she was dead when she was still here. Some days, she needed to be reminded of things, things like how I old I was and where I was going to school. But once she had the information, she acted just as Great Grandma Lilly always would. I always tried to understand that sometimes she needed to be told the things she didn’t remember and then I got to interact with my great grandmother again.