What I’ve Learned from my Grandmother’s Dementia

Today is my grandmother’s 87th birthday. My mom and I went to visit her today with a bunch of gifts and flowers. At first she was a little confused, like always, but the day went very well. She opened the gifts and tried on all the clothes we gave her. I painted her nails with the new nail polish I got her and then ate some chocolates with her. I showed her my pictures from the holidays and we talked and took pictures of our own. It was a beautiful day. 

My grandmother has dementia.

She is so similar to me in a lot of ways. I inherited her small hands and love for romance. We both cry when we get emotional. We both love sugary foods. We’re both dreamers.

Her and my grandfather met when they were both fairly young. They had two kids, one who is my mother and the other, my late uncle who died when he was about 40 from cancer. They got through this hard loss with the simple force of love. They moved to America in their 70’s, barely knowing the language. They babysat me for years. My grandma would always cook for us while my grandpa gardened. We never asked them to do any of this. They still insisted. 

On my 8th birthday my grandfather had a stroke. I remember being so confused as to why I woke up to see my mother crying on the couch on such a happy day. She explained to me that my grandpa “got sick” but didn’t tell me the full extent of it. After 2 weeks of what seemed to be a time of complete recovery, he had another stroke, this time paralyzing him. He went from hospital to nursing home to his old apartment, all with my grandma by his side. She didn’t take any of this well. When he was in the nursing home she became depressed and stayed at our house. I sometimes slept in her bed with her, and she cried to sleep almost every single night. After they luckily arranged a way to get him back to his apartment with aids coming to help throughout the day, we thought the hard part was over. We were wrong. Slowly we saw my grandmother change, becoming more forgetful, but we assumed it was a side effect of the antidepressants she was on. My first memory of really understanding that something was wrong was on Mother’s Day 5 years ago. We came to visit them at their apartment and we saw them outside their apartment, him in his wheelchair looking confused as she played with a stuffed animal, acting like she was babysitting a toddler. She had disconnected all of his feeding tubes to pull him into the hallway. No doctor will ever be able to explain why she did this, but what I do know is that she only had good intentions in doing it. She’s the kindest woman on the planet and wouldn’t do anything to harm anyone. We then realized she needed 24 hour assistance. Since then she’s had aids of her own stay to constantly to take care of her. 

When my grandpa died 3 years ago, we didn’t tell her. Anytime she asks we tell her he’s staying with us, and she doesn’t ask any further questions most of the time. 

For years now, we’ve been in the same pattern with her. She has her good days. And by “good” I mean she can keep up a conversation and sign any papers she needs to as long as we make her a template to follow. She always recognizes us even though she sometimes calls us the wrong name. Often she calls me “Lena”, the name of an aid who used to take care of my grandpa. But nonetheless, she recognizes me and I’m thankful for that. 

Dementia is not easy. It’s usually harder on the family than the patients themselves because by the time the disease becomes obvious to the family, the patient doesn’t really know what’s happening. There is no cure and it’s a roller coaster ride like no other. It’s expensive, even with insurance, to pay off whatever type of care the family selects. It naturally becomes an emotional, financial, and physical burden on so many families. It’s not a pretty disease. 

My grandmother has not always had the best aids. She’s had some that scream at her and others that don’t pay much attention to her. This hits my parents really hard because the whole reason they never thought of nursing homes as an option is that they saw the neglect that my grandpa got in them, and they didn’t want my grandmother getting that same treatment. We don’t have a fool proof way of knowing that her current aids are good ones, but we have faith in the system and trust that they understand what’s at risk. 

Every Saturday or Sunday, my parents and I go food shopping for her. She doesn’t cook by herself anymore, but her aids encourage her to watch sometimes as they prepare food. They encourage her to help with laundry too so that she still remains mentally active. Her aids take her on walks through the hallway in the winter and outside in the summer. With her little walker, she still remains a force as powerful as lightning as she roams around. She doesn’t interact with other elderly people much because she gets confused by interactions with strangers, so her aids are her best friends. We pray that they love her as much as she loves them. 

My grandmother is a HUGE romantic. Anytime I had a crush on someone, I would tell her and show her pictures. She loves love so much and gets excited anytime I mention a guy. The first time I had a boyfriend I told her, but somehow in her head we got married. When we broke up, I told her, but she misconstrued it to mean we got divorced. She told me they wrote in newspapers about me and him and about our breakup. She was really sad about it, even though in reality it was just a middle school relationship. The next time I got a boyfriend, I decided to tell her again. My mom asked me why, and I explained that even though it likely wouldn’t last forever since we’re in high school, I wanted my grandma to know I’d end up with a guy as good as him because he truly treated me like a gem back then. Nonetheless, people change and expectations fail, but I never told her we broke up. Why? First of all, I don’t want her to be as sad as she was with the first breakup. Second of all, I still want her to remember me ending up with someone good, even though in reality it won’t be him. 

Often my grandma will say something that’s not true and I always am conflicted as to whether or not correct her. She asks me when my graduation from medical school is, even though I’m still in high school and don’t even want to peruse medicine. She asks about family members who in reality are dead. She makes up names and events and anything else you can imagine. On one hand, telling her the truth would be practical so that even for a second, she’ll understand reality. But on the other hand, what’s the point? At some point my mom and I made a silent consensus to just tell her “everything’s good!” whenever she asks about something or someone she made up. For us, having her be comfortable in her inaccuracies is more important than confusing her with the truth. 

My grandmother’s smile has the ability to light up a room. It’s the same smile we see in pictures from when she was 20 years old. Even if she doesn’t have her dentures in, and even if she has no idea what’s going on, the pure bliss in her smile has the power to make you forget everything that’s hard in your life.

It makes you wonder whether dementia could possibly be a good thing. As weird as it sounds, what if all elderly people could be free from worry about their inevitable death? People treat dementia as a terrible sickness, and it is in most ways, but my grandma is free from legitimate worry. She’s not getting any younger, but she never worries about it. She never went through all the grief in losing my grandpa either. It’s almost as if the dementia saved her from her own emotions. 

I love my grandmother and I know she’s not going to be here forever. Many people recall not visiting their grandparents enough and then regretting it once they were gone. Since I’m so insane, I decided to always visit her whenever my mom goes. I always take pictures of her and tell her how much I love her because I’ve trained myself to be prepared to lose her. It’s not healthy. I know her time will come when it comes, but in my head, that extra visit will somehow give me more comfort when she passes. It’s wrong, but that’s how my brain has wired itself. 

Watching my grandmother through her highs and lows has taught me a lot. First of all, appreciate the hell out of your family. You don’t know when you can lose a loved one. A healthy person can slowly or suddenly get sick. Visit your grandparents. Call them. Love them. Put your phone away for the time you’re with them and try to learn from them. They have so much wisdom to offer. Second, the truth is less important than its effects. I have lied to my grandma for the sake of her happiness so many times. To me, it’s worth it. Third, respect your parents. My mom and dad have worked tirelessly to make sure my grandmas aids are reliable, her bills are paid, her food is bought, and so much more. They’ve taken this emotional roller coaster and dealt with it as best they could every day, never wanting me to see them struggle with it. You don’t know how much your parents are really taking on. Pay attention and respect them. 

But most importantly, you shouldn’t wait until someone is dead to appreciate them. I’m no saint by any means, but I know that I am handling the situation as best as I can. I love that woman. She is the brightest light in the world. I don’t know what I’m going to do without her when that day comes, but I know it’s going to be the hardest thing imaginable. My experiences with dementia are just one of the many different ways dementia can affect the people you love. Some patients have a more intense version of dementia than my grandmother, some have a less intense one. Whatever level it is, dementia is terrifying. However, love conquers all. I hope none of you reading this will ever see this disease in your family, but if God forbid you do, the best thing you can do is be there and love the crap out of that person. Whatever treatment option you decide on, make the foundation of it be rooted in love. It won’t cure the disease, but it’ll make it a hell of a lot more bearable.