There are over 3 million people in the U.S. that are affected with dementia as of today. Dementia (according to the Alzheimer's Association) is a general term for a decline in mental ability severe enough to interfere with daily life. Everyone who suffers through these irreversible conditions experiences it differently than the next person, and some people may regress quicker than others. Although many people are becoming aware of dementia in its many forms (such as Alzheimer's), it is truly hard to understand the brutality of this deteriorating disease until you get a personal look.
Unfortunately, like many others, I have firsthand experience in watching someone, whom I love, live with dementia.
As I go through the hallways of the convalescent home, I become anxious about what kind of day it's going to be. I think to myself, "Hopefully, he can say my name and be able to give me one word answers. Or will he confuse me for my mom again? Maybe I should put my hair down, I had long hair when I was younger, maybe it'll be easier for him to recognize me. Will he even be able to recognize me today? Does my Grandpa even remember who I am?"
After having this inner conflict, I walk through the door and I see him ... sleeping. I look at all the IVs he has in his thin arm and the oxygen tubes in his nose. I grab his hand to hold it, when he looks up at me with a blank stare. I give him a big smile, "Hi Pe, do you know who I am?" He blankly stares, and I ask him the question again. After 30 seconds, I think maybe I should talk in a heavier Filipino accent, since it's his native language, "It's me, Erica. Remember?" He nods his head, and goes back to sleep.
I sit next to him and just hold his hand. I think about who he was -- no, scratch that, who he is. I remember him giving me extra pieces of candy when my parents told him not to when I was a kid. I remember thinking he was a genius for his greatest creation: ice cream rice (actually now that I think about it, all he did was put rice, milk and sugar in a bowl ... either way 6-year-old me thought it was delicious). I remember sitting on the couch with him, watching "The Price Is Right" every morning during the summer. And when school started, he was always there to pick me up in his old Mercedes. He even shared his guilty pleasures with me and gave me his extra coins from playing the slot machines whenever he went to the casino. The first time I brought my boyfriend to a family party, I introduced him and he said "Oy, oy!" and winked at me.
Now I look at his sleeping self, looking thinner and weaker than the last time I saw him. It didn't all happen so fast. At first he started forgetting things, then he kept getting lost on the way home. At one point my family took his car away, which led him to call my cousin every day asking where his car was. After he stopped asking, he forgot about his car, and one thing led to another, which led to another, and now he often forgets who we are.
Sometimes I feel helpless, watching him deteriorate and having no control over it whatsoever. I used to think, how can we make him better? How do I make this easier?
Well there's only one thing to do, and it's definitely not the easiest choice: I must actively love him. It is one thing to know that that he has a place in my heart, but it's another to actually care for his needs, spend time with him, and just be there for him. Even if it means for me to just watch "The Price Is Right" with him or sing his old favorite songs from the Bee Gees.
For those who have loved ones going through something similar, know that they don't lose their dignity to this disease, but they lose it when people react harshly to it and no longer treat them humanely. It's easy to feel like there's no hope for them, and I even questioned the point of actively taking care of my own Grandpa, when he can't even remember his own granddaughter. The truth of the matter is that even though their body will deteriorate, they will always be that person who loved you when they were in a healthier state. But the question is, will you still love them the same?
As I'm about to leave, I kiss his forehead and say "I love you." With his eyes closed, he raises his eyebrows. In that small moment, I know that he loves me too.
NOTE: Every person's case of dementia is different than the other's. I'm just sharing my own personal experience.