My uncle has frontal lobe dementia.  My grandmother had dementia.  My other grandmother had Alzheimer’s.  One of the hardest things is to witness the loss of the mind.  To see minds once so sharp become dull with the struggle to remember basic functions is heartbreaking.  To witness the loss of cherished memories, the loss of even remembering who they are is a struggle.  To know they don’t know themselves, they don’t know you anymore is such a disorienting mess of emotion that feels trying to drink the ocean.  Minds once so vibrant, filled with ideas, minds that created thriving and successful lives, deteriorating to a husk feels like a cruel joke.  I’ve never dealt with death well—it isn’t just a fear of death itself for me, it’s the emptiness that swallows those still here after losing someone that gets to me.  Witnessing these illnesses that leave the body but strip the mind is like witnessing a living death. Sure the person is still here, but their mind is not.  The person we knew is gone.  The fact that their physical existence is here, that we can see, hear, and feel them conflicts with the truth that who they once were no longer exists.

The brain is such an amazing machine.  If we want to get really existential for a moment, the fact is that a lump of material can direct such function that wouldn’t happen without it.  If it weren’t in our bodies, it would have no effect on the world, without it our bodies would do nothing.  But it is nothing more than a pile of cells.  So it begs the question: Is this all in our minds?  Harry Potter asked if his death was all in his head to which Dumbledore response, “Of course it’s in your head, why should that make it any less real?” The mind is that powerful that it can create reality.  The fact that we can witness our own evolution, that we can plan out our own future, that we can decide what we want to do and that thought generates action is absolutely fascinating.  We can control the elements around us by listening/letting the brain control us (within reason).  So seeing someone’s faculties disappear is beyond disorienting—it’s heartbreaking. Seeing someone else lose their mind shifts the entire dynamic of reality because suddenly that experience we had with that person is shattered—there is no more shared experience. It’s not like two people interpreting an experience different ways—that experience is taken from that person, it no longer exists in their minds.  And full transparency, that is where I’m at my most selfish.  My brain doesn’t balance that discrepancy well, it fears it.  I will help how I can, but it is too painful for me to sit with it.

Our lives are composed of stories, of memories of what has happened.  Losing those who participated in that, who held a foundational role in our lives is like losing that experience.  We have an image of people in our lives and once these illnesses of the mind start to take that from us, we no longer live in the same reality we used to.  Adaptation can be hard—I’m not talking flexibility.  Flexibility suggests that we can move back and forth on a matter, change as needed.  Adaptation is harder because there is no back and forth—there is a new reality we had no say in creating.  The same is true for the person experiencing this illness, but the more they lose their memories, the less fear they feel because they simply ARE at that point.  We see a decline in capacity whereas they no longer know any different.  Seeing one grandmother who built an empire of a business and was named business woman of the year literally forget how to eat was sick.  Seeing another grandmother who had been willing to help how she could under nearly any circumstance unleash all the anger and resentment she held in for years was devastating.  Seeing an uncle whom I never was able to get emotionally close with but who lived a successful life, who made some decisions regarding my grandmother’s care that I didn’t agree with, and someone who had been so physically strong, suddenly becoming a complacent child unable to walk is cruel. 

The truth of the matter is if I have to look in the mirror in this moment I’m not proud of myself.  My actions are 100% fear based—because I don’t want to lose these things.  I came into this world feeling behind the 8 ball and just when I feel like I have my bearings, the people closest to me, the foundation starts to crack.  In witnessing what I have with these losses, I don’t want to go down that path as well—I’m terrified of losing my mind, especially as I’m getting older and noticing differences in my function, things I struggle with that I never did before.  Sure, at a certain point in this illness they don’t even know they are declining anymore– But we still see it.  Losing these people was the loss of our family history.  It was the loss of our foundation.  It is the witnessing of the fragile humanity of the people we saw as infallible Gods for a while.  In an instant, the curtain is peeled back and we see life for what it is: an incredibly fragile illusion, like revealing The Wizard of Oz not as this great and powerful being, but a scared man hiding behind an image.  It is the loss of someone still physically here but worlds away in every other aspect.  I don’t  want to hide from the people I love because they are no longer who I knew—I don’t want to hide from myself as I feel things slipping away.  The only way to do that is to tear down the curtain and be present with who we are and be grateful for the time we have.