14 Minutes, 37 Seconds and a Microcosm of My Life as an Alzheimer’s Caregiver

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Mom and I spoke a couple of times last Wednesday as we normally do. The morning was a brief hello while the evening was a bit longer. 14 minutes and 37 seconds to be exact and the conversation was a perfect microcosm of the gut-wrenching emotional and sensory roller-coaster that is my Alzheimer’s caregiving life.

It started like all of our other conversations. The phone rang and Mom eventually picked it up.

Me: How are you doing today?

Mom: Oh, I’m ok. Doing ok today. Better than I was yesterday I think…*sighs*

Me: Ok, well that’s good. *insert some ridiculous attempt to get her to smile or laugh*

Mom: It’s raining here. Is it raining there?

Me: No, it’s not raining here…and I tell her about the day’s weather.

Mom: It’s crazy here today. Lot of people around.

Me: What do you feel like doing today?

Mom: Not much. I think I’ll watch the TV.

And on it goes, and goes and goes. As Mom’s disease has progressed, this introduction to any conversation has become as predictable as death and taxes. The same volley of small talk, the same flat tone with the (very) occasional flash of her trademark self-deprecating giggles. Those are the best because they’re glimpses of Mom and my goal in any conversation is to coax them out.

Despite my best effort last Wednesday, her trademark laughter wasn’t in the cards. But something else was.

Intermission

There’s a lot of dead air on these phone calls. I do my best to give Mom the time and space she needs to interpret what she’s hearing, organize her thoughts, find the words and respond to questions. With that comes silence.

Looking back now, it’s embarrassing that it took me so long to learn this skill but better late than never. Now I know that Mom wants to communicate. It just requires patience on the part of whomever is communicating with her. And committing to give Mom the space to participate has enriched our day-to-day interactions in immeasurable ways.

But in this particular patch of dead air, on this particular phone call last Wednesday, something else happened. On the other side of the silence, Mom was .

Change of character

After numerous attempts to get Mom engaged in the conversation, on her own terms, I segued into wrapping up the conversation. While telling her that I’d call her the next morning, like I normally would, Mom’s response caught me off guard.

Initially, it was the tone of voice. No longer flat, It was now buoyant. And loving in a puppy love sort of way. Adding to the oddity of the moment, her choice of words and articulation were instantly (and momentarily) crisper.

I was taken aback. As the conversation went on, I couldn’t help but feel like I was talking to a 30 year old, pre-Alzheimer’s version of Mom. And then it hit me.

Mom thought I was my dad. You know how time slows to a stand-still when you drop a dish that you know is going to crack into a million pieces? That happened here. And in that slow-motion moment, it was abundantly clear that in her mind, she was talking to the love of her life who’d been dead thirty-one years.

The words she chose, her airy tone and flirty laugh all came together to make it abundantly clear. I didn’t need the validation but it came when she called me as we were hanging up.

Callused

Five years into Mom’s walk Alzheimer’s, I’m callused to many of the little moments that were once so gutting when we started out. Of course I’m sad when Mom can’t remember my name or the kids name or Lindsay’s name, but it doesn’t sting in the moment any more. I brush through it without flinching, not wanting to make Mom self conscious about it.

Yet this one stung in a way that I hadn’t felt before. Alzheimer’s has a way of doing that-going lower when you think it’s not possible to get any lower . As soon as you think you’ve got it, it gets you again. Like the life and death version of golf.

In this case though, my initial reaction was, well… . I can’t un-hear this! Tempted to give myself earmuffs and shout Make it stop! It felt as though I was teleported back to 14 years old and was eavesdropping on Mom and Dad’s conversation from out of their site around the corner. I was hearing something that I shouldn’t be hearing.

Sadness

Still feeling , a not-so-familiar combination of sadness, humiliation and anger wafted over me. Come on Alzheimer’s, isn’t it enough for you to strip away Mom’s ability to recall the name of her only son? Do you really need to make her think she’s talking to the husband she lost far too young?

This sharp combination of sadness, humiliation (don’t get why I felt humiliated but I did) and anger coursed through my veins so fiercely that I wanted to break something.

It came on quickly, intense and debilitating, like an ice cream headache. And then faded away.

Beauty

As the sadness and anger dissipated, a sense of beauty took its place. Mom was untethered from Alzheimer’s as she spoke and it was beautiful. Talk about irony.

It was the disease which was responsible for her being in that state of mind so disconnected from reality and logic. Yet it was the state of mind that allowed her to be so freely and joyfully at peace. In those moments, Mom was truly happy.

Needless to say, this was giving a whole new meaning to ‘ just roll with Mom’s reality’ but I could feel her floating on the other end of the phone with each word she spoke. It was odd, sure. But it was pure, unadulterated joy that I was hearing and feeling from Mom. She wasn’t stuck in quarantine, she was back in a time when she was thirty years old and in love.

Her words were touching. Her tone was too. It all made me feel closer to Dad who I still miss daily 31 years later. Mom and I are about as close as close gets these days but somehow I was feeling closer to her too because I was privy to this vintage side of her.

And more than anything, it rekindled a sense of family between Mom, Dad and I that I hadn’t thought of in years and thought was gone forever.

Microcosm of my Alzheimer’s caregiving life

Dad died when I was 12 and while I still have memories, he’s predominately been just a special face in grainy photos for longer than I care to admit. Until last Wednesday when Mom and her Alzheimer’s brought me back to him in the most unimaginable and mind-bending way.

The phone call lasted 14 minutes and 37 seconds and had a touch of everything. Guttural sadness. Flashes of anger. And snippets of beauty if I was open to seeing them.

It was a perfect microcosm of my Alzheimer’s caregiving life.

Originally published at https://roandsteve.com on July 28, 2020.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.