I am writing a book. I’ve thought about it for a long time. All of these long posts I write to spread awareness and share our story are just practice for it. I had thought it would be something for one day when this journey with my mom is over, something from a spiritual perspective that is decidedly not Abrahamic, something uplifting that shows all this experience has taught me, wrapped in some neat package that gives it meaning.
But more and more, I am feeling the pull to do it now, while the emotions are fresh and I am in the experience. Perhaps one day I will write a different after version with all I was wrong about now. But this is the art of now and what needs to come out. More and more, I know that my words are my activism.
I want people to understand the raw reality with a view from the weeds and not the cleaned up version that comes with the distance of now past experience. There are already enough of those books. I want people to understand how dwelling on the borders of Dementialand and crossing the liminal to join a loved one rather than trying to drag the into normal reality feels…
Here is an excerpt:
There are days, weeks even, when dementia thinks it is the only person in the world.
People will tell you that people with dementia become like children, but in my experience that is not true. Childhood is full of hope and possibility. There is none of that here, only the fading that comes with a slow and heartbreaking march to death.
And it’s not like taking care of a child either. A child doesn’t know what she doesn’t know. With cognitive decline, there are spots along the way where the person has forgotten many things, but still knows pieces, even if they’re just slivers like “I’m 80, not 8 and you’re talking to me like a child.” While some elders with dementia take comfort in things like baby dolls, my mom looked at me like I was not playing with a full deck the first time I broached the subject. She was clearly not ready and that felt like a small victory.
Perhaps it will be something for later in the progression, perhaps not.
Everyone is so different. As humans, we like to think that our experience is *the* experience, but the truth is that there is no one dementia. It all depends on the type, the part of the brain affected, the present stage, the living environment, and the unique makeup of the individual affected by the decline.
The one thing I do know is this. And I know it so deep in my bones that no one will ever convince me otherwise:
Having a disease that makes one forget is not the same as never having gained wisdom and life experience at all. It is not the same as never having left homelands, lived as a refugee, learned languages, escaped not one but two authoritarian governments, born and buried children, worried as a lover fought in Vietnam, raised a family, buried a husband, or built a new life in the aftermath.
A disease cannot erase all that. And it does not erase humanity. Nor does it erase that there is within a body, even one ravaged by disease and time, a spark that is sacred and eternal.
The inability to remember whole worlds doesn’t mean they never existed, that they never shaped us, that they don’t have a hold on our emotions. We all live in our own reality. Living in one, even one that most of us would consider abnormal, does not change that it is reality for the person dwelling there. And it doesn’t mean a person doesn’t deserve dignity and respect, even though as a caregiver one sometimes has to fight valiantly to offer these gifts when a loved one is behaving in challenging ways. People grow tired of hearing, “It’s not them; it’s the disease,” but it is. It is all part of the decline.
And decline is just that — decline, the slow death of a brain that will ultimately lead to the death of a body, but keeps a person (and family caregivers too) in the limbo of a half-life filled often filled with flashes of sometimes inappropriate and intense emotion peppered by moments of forgetfulness and lucidity. It is intense and often leaves beloved and caregiver alike feeling physically and emotionally exhausted, increasingly isolated, and utterly alone.
There are days s a caregiver when you wonder if you will ever remember again what it feels like to not be tired, but it doesn’t really matter. You keep going, because you have to.