Death is finite – a particular point in time. Dementia, in contrast, is dying; a process of being incrementally peeled of personality. The onion loses another layer. My mother looked the same but she became smaller, and smaller. The dementia patient may be blissfully unaware of the losses, like my mother. But caregivers see it each day, especially if they’re daughters.
This story you are beginning is a uncharted love story of caregiving a diva, by her daughter. Over eleven years, I navigated losses, lost my way, nearly died, myself, but somehow I found a better ending for her and a beginning for me. Without leaving her bed, my mother voyaged throughout her life: time traveling. We interacted and exchanged particularly lovely moments that popped into reality, unlike any time before. Then she was inexplicably gone again. The beautiful crone that my mother had become sat entranced with another T.V. episode where the only traveling left was between her mouth and her plate.
Her eleven year illness softened us. We became different because, while she untethered, I was too confused and overwhelmed to do otherwise. Dementia and its slow unwinding connected us.
What language do I use to describe this brainteaser? What happened to us has a better chance to be untangled and offered to you, if I use metaphors of equal character and strength. In the years since Einstein, quantum physics has proof of the unfathomable. This language of quantum physics, though scientifically based, is poetic to me. It offers the richest opportunity for describing our experiences from the inside - out. I am not a quantum physicist; I am, however, just foolish enough for the struggle to understand (and unify) it all. Do I need to do the math behind quantum physics to see its beauty? Endurance caregiving in dementia and death changed our reality – before we ran out of time. This is a quantum metaphor.
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An introduction to ‘Time traveling’
One person can walk into a room and change everything. People have fields around them. You can dissolve in some of them – if you are not paying attention. Sometimes they soothe and smooth you – other times it is not so pleasant. All human beings have them; Steve Job’s “reality distortion field” is widely described in the press and in billions of dollars in Apple revenue, even after his death.
Mothers have big fields. They can warp time. I call it time traveling, its more accessible and better framing for people who believe in a predictable Newtonian (or even a greeting card) reality for all.
These fields might move you back and forth from the mundane to the profound, in a moment - even if you don’t want to go. Revelatory leaks or cracks in what-you-think-you-know-to-be-the-rock-solid-God’s-truth can happen - even if you are trying hard NOT to have them. You don’t have to be wiling to travel. Remember, we are talking about time: it can do with you what it wants - kill you, age you, maim you or wake you. Breathing makes us time travelers. Look in the mirror. (Those wrinkles are skid marks.) Your body is time traveling and you are along for the ride.
Sometimes – especially with mothers and daughters, this time-traveling can be diffuse – like you are lost in a foreign city without language – or lipstick. Or the whiplash kind of daydreaming is time traveling too – you’re unaware you’re gone until the rude jerk back. What did that teacher say?
Mourning is also time traveling – liminal. The kind of “time traveling” our story is about is one of focus and of love. We discovered another way to love each other in the world of ERs, hospitals, dinner parties, and adult diapers. Our stories are actually funny in a “if it does not kill you, it will make you stronger” kind of way.
Whatever my life is to be now, I need to parse this crossing – our journey. I need to form the story – in the telling - to see it.
It will also generate rules, girlQuantum rules, because what we have been through counts for something. They are common to both, time traveling and care giving of yourself and others. Some might be new to you, or simple reminders of what you and I already know to be true. I have earned this wisdom but if I don’t mix it with the next moment, I will repeat my errors in habitually comic and tragic scenes. I am Bill Murray in the “Ground Hog Day” movie, learning how to love Andie MacDowell and get out of my own way. Daily, we re-live the moments of our lives, over and over, until we germinate or die.
We are time traveling now, so let us begin at the beginning, e.g. in the middle – which would be now: present time. Here’s the first rule which is Number 21.