I love my grandpa and he has dementia. This is what it taught me.
1. Dementia makes your brain change, too.
For your whole life, you have lived in a world that praised objective reality. Something is or something is not. But, when dementia knocks on the door of someone you love, you learn that subjectivity often wins. You don’t lie to that person, but you don’t always knock down their perceptions of reality, either. You start to realize that even though what they think may not be what is actually true, it is true to them. You begin to meet them where they are, instead of only seeing that what they are saying is incorrect. You make sense of the nonsensical and you learn to live in another person’s world. And once you start doing that with someone with dementia, you begin to see how every person deserves the chance for someone to try and understand them, even if we think they are incorrect… Especially when we think they are incorrect.
2. Dementia is not like the movies.
One day, things are really good, and then you learn that someone you love has dementia. You remind yourself of The Notebook and other stories where things have a sad, yet beautiful ending and you feel okay about that. You create your own story in your head in which you are the protagonist and all will be sorted out in the end. Until one day, the realization dawns on you that life is actually very different than the movies. Movies end in two hours, but life goes on until someone reaches their end.
3. Dementia makes you really, really sad.
Life is full of an infinite amount of dependent variables, but sadness is a variable independent of all others. It is indescribable to watch someone no longer able to be who they are. Not only does your body betray you, but your mind betrays you as well. A helpless type of sadness creeps in, and questions about the meaning of life abound.
4. Dementia makes you really, really happy.
Having enough bad days can make a person forget what good days are like. And then, when you are about to resign to the fact that this person’s life will forever be a string of bad days, you get a good day. Sometimes, a person just seems to be like who they once were. Other times, circumstances are still bad, but you are able to bring a smile on their face. You finally know what Taylor Swift meant when she sang: “you got a smile that can light up this whole town.” There is something that surpasses understanding, when someone you love is so sad, but you are able to make them smile like they used to, before all the sad things happened. A bit of happiness can be a lifejacket until you get to the next bit of happiness. It pulls you upstream right as you thought you were destined to be a sad, downstream fish for the rest of your life.
5. Dementia makes you lose hope.
The very essence of dementia is that things will not get better. It is a progressive disease, and while progressive thinking may be fun, a progressive disease is no fun at all. Proverbs 13:12 (NIV) offers, “Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” Your heart starts to grow sick, because your longing for life to be good and kind to someone you love is gone. Some hopes in life don’t get to live; some hopes must die.
6. Dementia gives you a new type of hope.
While you may have been forced to give up hope that a person’s memory can be fixed, you find something new to hope for. You have resigned against your old desire for life to be good and kind to someone you love, and you start to find ways to bring goodness and kindness to their life. Ernest Hemingway once said, “The world breaks everyone, and afterward, some are strong at the broken places.” Life has broken someone’s brain and probably has broken your heart. But, in the brokenness, you make new hopes. Hopes like making someone feel as loved as possible and noticing the love already around you. The biggest choice you have left is to create as much love as you can in life, and that is the hope you can hold on to forever.
7. Dementia shows you the truest compassion.
Mother Teresa once said, “I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” I haven’t quite gotten there in my life, because I love hard and hurt hard. But, I got a glimpse of what she was saying. When I am able to feed my grandpa ice cream, when his face lights up when I tell him he is handsome, when he sings with me, and when people laugh at his jokes, I feel only love. I feel a little of what hurts, but I feel so much more of what is love. My heart feels more like a star on fire than an organ beating inside of me, and yours can too.
8. There is no 8. It’s a paradox because when dementia comes, you don’t get the ending you wanted or planned for.
But, when dementia comes, you make the ending as loving as you can. You also find that dementia, in a weird and somehow paralleled way, is a huge metaphor for life. The cryptic lessons that dementia taught you bring you back to the most basic building blocks of humanity. Life is messy and hard and nonsensical, but love is the only thing that makes sense of it all.