At a time when our dementia world seemed to be growing darker by the day, waking up to the importance of non-verbal communication gave me light. I wish I had realized it earlier, for Mom and Steve’s sake (as well as my own), but for right now, like everything else on this journey, I’m thankful to have learned it at all.
It didn’t come easy. Not much does when your head is (purposely) in the sand.
I’m a people person.
I can read body language as well as anybody.
I got this!
That’s really what I thought. But I was wrong (again).
Once I acknowledged the need, I had to learn, and then, finally, I needed to practice the skill. Truth is, I’m still practicing and will have to continue from here on out. Because Mom and Steve are still changing. So I’ll have to continue changing too.
Non-verbal communication and why it matters
The change in communication has been one of the most excruciating aspects of caregiving for me. And I’d bet it is one of the scariest parts for Mom and Steve. The cruelty of Alzheimer’s and Lewy Body Dementia robbing Mom and Steve of their ability to use language to articulate, interact and connect is flat out horrifying. Is there a word for worse than cruel? If so, that is what this part of their diseases is to me.
From educating ourselves on their respective diseases, we understood that communication challenges and deficits would confront Mom and Steve over time. Initially, like so many other things, I didn’t want to admit this to myself. It was just too damned sad. If I wish it away, maybe it’ll stay away. But that didn’t work. It never does.
And even when I finally admitted it to myself, I pooh-poohed it.
No one knows Mom better than me and I know Steve as well as anyone but his children and siblings.
I can read them and I communicate for a living.
I’m prepared and I’m ready!
Here’s the thing: even if I was prepared (I wasn’t), I wouldn’t be ready. You can’t be ready for this.
Tim Cook gave this message to the graduating class at Stanford last year. He was referring to his years of preparation as a top lieutenant to Steve Jobs–and how he didn’t feel ready when his time came to lead Apple. The message was meant to address a broader life context, but its spirit applies here. Even if you feel prepared for caring for a loved one living with any form of dementia, you won’t be ready.
You have to learn on the fly. The utter frustration and sheer sadness that flooded me as our communication divide grew was my signal: I needed to learn.
It became clear that the spoken word was no longer the primary vessel for two-way communication with Mom and Steve. Yes, I can still communicate verbally and Mom and Steve understand. And Mom even speaks relatively freely, but it’s all on the surface. Pleasantries, easy questions, stock answers to questions–things like that. On repeat.
How are you?
And the girls?
My day was good.
It was busy but good.
I feel fine.
Mom is talking but not communicating. And for Steve, the words don’t come as often or quite as easily. In both cases, I know (now) that just because they can’t find the words, it doesn’t mean they don’t have things to say, feelings to express, and love to share. It was up to me to do three things:
- Keep communicating with each verbally (don’t skip it just because not much comes back).
- Get a better understanding, from a general perspective, about what non-verbal communication looked like.
- Learn Mom and Steve’s unique and specific non-verbal language or communication style.
Non-verbal communication 101
Body language is largely self-evident. Lots of facial expressions and postures have pretty obvious, if not universal, connotations. Smiles, frowns, pain, folded arms etc. But I had to learn that body language is just one dimension of non-verbal communication.
What about gestures, like when Mom waves her hand at me–not in a “hello” sort of way? Is that frustration or anger or something else? Or when Steve turns around and walks in the other direction? Is that simple confusion? Is he bored? Does he just want to get some exercise?
When they are verbal, what is their tone or pace of speech telling me? They might be speaking, but the words exiting their mouths are only a small part of what they are trying to communicate.
These are the things I needed to learn. First, I needed a baseline understanding on a general level, then more specifically with Mom and Steve.
I’m getting there, but like learning (er, mastering) any other skill, it takes a sustained effort. Maybe not 10,000 hours like Malcolm Gladwell says in Outliers, but definitely a sustained effort.
I recently started with a personal trainer. I’ve always been pretty active and regular exercise was a part of my life long before I needed to pay special attention to my self care as a caregiver. Yet, in the days after my first session I could barely walk because I was now working muscles that I wasn’t previously.
Practicing my non-verbal communication skills is a little like that. Continuing to talk with Mom and Steve is the easy part. But forcing myself to practice a new form of listening, giving them the time and space they need to respond, was initially hard. Giving them that time and space out of courtesy is one thing, but doing it to interpret what their non-verbal communication is trying to convey is another thing entirely.
At the start the beginning, my patience muscles were sore. By the end of each exchange, I was mentally exhausted. But I tried. Mom is flipping her hair, is that a sign? She shakes and tilts her head like that a lot, what is she feeling? And how about the arm wave, I’m right here Mom!
Every interaction of every day is an opportunity to practice. I used to deny it and wish it away, but now I cherish it because once things began to click, it didn’t feel like practice at all. It felt like communicating.
Words aren’t gone, but Mom and Steve each have their own non-verbal vocabulary which speaks volumes more. And it’s become my job to learn it. Working towards fluency in Mom and Steve’s unique non-verbal languages is one of the best things I’ve done as a caregiver.
Doing so gave me hope when I felt hopeless. It gave me a sense of peace when I was awash in feelings of failure. And, best of all, it gave me connection when I felt disconnected. It’s given us light again in the face of our lurking Alzheimer’s and Lewy Body darkness.
And while I can’t know for sure how it makes Mom and Steve feel, I have a good hunch they appreciate being heard again. After all, I’ve seen the signs.
If you have a loved one in a senior living community or receiving care in the home, please consider sharing your experience in the form of a review. It’s as easy as 1) clicking here 2) searching for your community or agency of interest 3) registering in two steps (no phone number needed and definitely no telemarketing) 4) Leaving your review.
It will take 5 minutes or less and your contribution will help someone else. If you don’t see the community or agency you’re looking for, please email firstname.lastname@example.org and we’ll get it added quickly.