‘I’m here,’ she sobs. More and more it doesn’t make sense. Yet it’s all we have now.’: Woman describes caring for mother with Alzheimer’s, ‘Love doesn’t care if I understand’

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“Mom was diagnosed with early-onset Alzheimer’s at the age of 62. She started losing words as the dementia progressed. She’s still pretty verbal for her late stage, but her vocabulary is limited. The word ‘dog,’ for example, has become a placeholder for all kinds of things. She may say, ‘I want that dog,’ but actually means she wants a drink or something else we can’t decode.

Also, the words she has left don’t arrange themselves in coherent sentences very often. She will still talk to you and engage in a short conversation, but it has little meaning in the way you want it to.

And yet… Mom and I can still have great conversations. She will say something, and I will say something in return. And to watch us, it looks like we’re carrying on and talking as anyone else would. People see us interact and ask, ‘What did she say?’ My response is usually, ‘I have no idea.’ It’s surprising how little that matters, though.

Courtesy of Brianne Grebil

I’ve come to see pretty much everything we say to each other is always a nonsensical version of the same thing.

‘I’m here,’ she laughs and giggles.

‘I know.’

‘I’m here,’ she cries and sobs.

‘I know.’

‘I’m here,’ she curses and yells.

‘I know.’

Expressing and receiving. Stating and acknowledging. That’s all she and I are ever really doing. And I find our gibbered conversations utterly beautiful — more and more so, the less she understands. We don’t have to concern ourselves with getting it right. We don’t have to carefully choose our words or worry about feeling awkward. There is so much freedom in being with someone and knowing that trying to understand each other is pointless. Now… we can simply be with each other.

Courtesy of Brianne Grebil

This is why I began to love being in the presence of my mother. Even when it’s hard. Even when it sucks. Even when it crushes me. She’s teaching me a different kind of love. Something just beyond my intellectual understanding happens to me when I am with her. She is constantly pointing me toward the deepest secrets and treasures, asking me to open doors to worlds I otherwise would’ve never known.

Courtesy of Brianne Grebil

Under the surface of all our experiences together, I keep hearing her beckoning me to keep looking. It is a call I can’t ignore or turn away from. Her voice whispers in my mind: ‘I’m not in my words, you won’t find me in what I say. Don’t look for me there. I’m not in my past, you won’t find me in our memories. Don’t look for me there. I’m not in my actions, you won’t find me in how I behave. Don’t look for me there.’

The disease has hidden her away, and she is nowhere to be found in the world I once knew. And so I have to go looking for her elsewhere. Like I’m on a scavenger hunt for my soul.

Courtesy of Brianne Grebil

It’s a strange thing. The most difficult experience I have ever faced has become my awakening. I cannot wrap my mind around that. I don’t know how to reconcile it. This thing that guts me to my core is the same thing that has shown me more of life and love than I knew possible. What do you do with that?

I’m beginning to see that the answer is: nothing.

Courtesy of Brianne Grebil

We want to believe life is supposed to make sense, but Mom has shown me it doesn’t. It is an infinite paradox that will never cohere the way we want. We actually miss out on much of life when we try to make sense of it. I’m learning we only ever get to see and experience a tiny sliver of life, but we innocently make conclusions about the infinite whole based on the assumptions we’ve made about the tiniest part.

Ultimately, life will never actually make sense. We humans crave order and reason and cause and effect, and when we can’t find them, we assume something is wrong. When really, life just does what it does, rarely with the kind of reason we would like. If you can broaden your gaze, you will find that there is space in life for these incompatibles; these absurdities. We may think certain things cannot co-exist, but that is just the limits of our own understanding, not any real truth.

Courtesy of Brianne Grebil

In this existence, chaos and creation will always share the same space. So will beauty and ugliness, life and death, love and grief, and confusion and clarity. None of this will ever make sense to the part of us that wants to understand.

I’m finding the less I try to make sense of it all — Mom, the disease, life, and what’s happening — the more sense it makes. I don’t understand it, but I can live it.

It’s a good thing love doesn’t care if I understand.”

Courtesy of Brianne Grebil

This story was submitted to Love What Matters by Brianne Grebil and is an excerpt from her book, “Love Doesn’t Care if You Forget.” You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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‘Who are you? I don’t know you and I’m really scared,’ she said, shaking. She was crying now. I was her baby, her best friend.’: Woman shares painful Alzheimer’s journey, ‘Nothing prepares your heart for the day your mom doesn’t know you’

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