On Language

My task for this post is to write about the shittiness of watching your Mom lose language – her ability to communicate. And I know it’s a really cheap irony to say – but I lack the words to describe how heavily this loss sits, deep within chamber of empty things that Alzheimer’s has hollowed out within me.

Last week I wrote a quick anecdote about a moment when Mom found words, and how victorious those moments feel. There are countless other stories. Often, Mom gets really mad at us when we leave her alone or she doesn’t feel fully included, and it draws out a sort of pre-teen, FOMO-induced angst. These angers are generally irrational and unfair – levelled at us for going out with friends or taking time to ourselves. They’re feelings I know are 110% driven by the disease, by the way my mother’s brain is being twisted, by the breakdown between the synapses. Usually, time is the forgiveness she grants us in forgetting she was mad. But occasionally, we have other, minor breakthroughs. She realizes she is being unfairly grumpy and angry and will utter a quiet and deeply genuine “I’m sorry” when she puts the pieces together.

These victories also pierce my soul, and feel so welcome because they come with logic, with understanding, and with the gift of grace.

But while I can hand you so many small stories of understanding, there are the uglier ones that I shove into a back-closet of my mind. They don’t make the blog because they’re so unbecoming – exposing the worst parts of the disease, and of my impatience and lack of empathy as a caregiver in responding to my Mom’s helplessness.

Mom’s greatest loss over the past year has been language. She can rarely utter more than three connected words together. She craves sentences, but finds growing gaps between words. She can no longer forge a pathway to lead us to so many of her observations, praises, joys, frustrations, laments, and anxieties.

Simple things we take for granted, like “can you please get me more mouthwash at the store?” have devolved to her following me around the house with an empty bottle of what needs replacing. I can often deduce what she wants to tell me from the words she finds, but in my daily hurry I generally resort to hurriedly filling in the gaps for her and dashing onto the next thing, instead of standing with her and helping her find the pieces together.

I’ve also had to simplify language – terms of endearment - to ease her understanding. I no longer call her ‘Mom’, as it is confusing to try and capture her attention with that term while my own children also call me the same. So I daily refer to her with a much brasher, colder ‘Barb!’ It is almost always underwritten with tones of exasperation, frustration.

The growing language gap makes us all, Mom included, acutely aware of the hastening of loss. Daily, I am grateful that so much of who Mom is remains – her passion for the outdoors, her upbeat spirit, her love of people. But language is robbing us of even these things. She can no longer attempt to solidify some short term memories by recounting them. We all brush Mom aside so much more quickly, because engaging takes markedly more time and we often still leave the conversation thwarted and frustrated.

I’ve been trying to read to Mom – Mary Oliver poems, a book about Amelia Earhart she picked up in the bookstore the other day (another small victory)! But even in the rare moments when I carve out time, Mom can’t always understand what is being read aloud.

In my mind, this – the ability to communicate – is the most grotesque of our losses. It strips away Mom’s humanity, and having to stand by and watch is suffocating. It elicits deep questions of doubt, anger, and injustice. Thankfully – there are still patterns of communication that bind us back to the good moments – most nights while we’re eating, Mom points to the sunset. Whenever visible – it sneaks it’s way in through the side window by our dinner table, and it always catches Mom’s eye. She’ll always try to talk about it, point, smile, and sometimes she even finds the word ‘beautiful!’

But in so many of other, wretched times, I’m left just sitting with the questions – to let the doubt and the anger be felt – as opposed to shunting them off for other moments.

That’s really all I have for now.

Thank you for letting me share an angrier, harder post. And thanks for your support as we continue to talk about and advocate for an end to Alzheimer’s.