Predictably Disastrous Results
I had no idea what I was doing on my first day as a professional 18 years ago, working in a skilled nursing facility full of people living with dementia. Hired for my documentation skills, comfort level with the population, and the right attitude, no one gave me so much as a cheat sheet hinting “do this” or “don’t do this.”
That lead to predictably disastrous results. I got hit in the jaw. I got knocked on my butt. I was publicly ridiculed by both a resident and co-workers. I made a very nice lady burst into tears nanoseconds before I burst into tears as well.
Because my mom worked there, too, I didn’t see quitting as an option. And because–despite what the movies would have you believe–taking a right hook to the jaw hurts, I devoted myself whole-heartedly to getting better at my job immediately.
In this pre-Google era, I stopped at the library on the way home from work and took out as many books on Alzheimer’s and dementia as they’d let me.
Learning, Implementing, and Observing
The next two things I did on this course of self-improvement were equally important. I started doing what the books advised. Whatever skills or techniques I’d read about the night before, I tried the following day.
Then I carefully observed the results.
Did using “reality orientation” really work? No. Millie showed more confusion. So did David. 98 year old Mildred, on the other hand, seemed both calmer and happier when I congratulated her in response to her announcement of her much longed-for pregnancy.
As I continued reading and signing up for courses, conferences, and seminars to increase my knowledge base and learn new skills, I kept implementing. I kept noting the results. I kept refining my technique.
Almost as quickly as I learned reality orientation is a load of hooey, I realized how I approached people made all the difference in how an interaction went. I now understood the reason I’d been punched me in the jaw was due to how I’d approached him and everything I did during the interaction.
Although I hadn’t ever intended to be disrespectful, that’s how it appeared to him. I didn’t think I was talking too fast, but in retrospect I knew I had been. Otherwise, he wouldn’t have transformed from placid to agitated before my eyes.
I didn’t think I’d been too close to him, up in his personal space. But obviously I was, or his fist couldn’t have connected with my jaw.
Understanding the difference in how I perceived a situation and how the person living with dementia perceived the situation allowed me to not only refine my physical approach but also to understand that was only half the equation. I needed to focus on my energetic approach, too.
The more I learned, implemented, and observed about communication in all its forms, the more I was able to refine the necessary ingredients to the right energetic approach. Because Alzheimer’s and other neurodegenerative conditions affect so much more than memory–expressive and receptive communication and vision, in this case–the right energetic approach seemed not just a good idea, but a crucial element to a successful encounter.
I noticed people living with neurodegenerative conditions picked up on the energetic approach before anything else even registered. I already knew the results of manifesting nervous energy by talking a mile a minute.
But I learned if I approached someone respectfully–using the right physical approach, essentially–it made a positive difference. Speaking more slowly helped. Giving someone time to comprehend what I was saying and a fighting chance to think of what they wanted to say back to me helped.
If I added kindness to the mix, that made even more of a difference. It wasn’t that I’d previously been unkind, exactly. But looking for little ways to add more kindness got even better results. And it was always little things, like sticking around those extra moments after “business” had been taken care of, sending the signal that I saw a person rather than a task.
A speaker at a conference said, “Love is more than a feeling. Love is a verb.” Yes! I thought. In a professional setting, love just isn’t part of the conversation. Odd, considering that we’re working with humans, and we all know humans respond better to love than anything else.
Three Crucial Elements
By this point, I’d been getting terrific results that I was able to duplicate time after time after time. Respect, kindness, and love were the three crucial ingredients for any interaction with people living with dementia. It was the huge difference between someone having “behaviors” and everyone coming away from the interaction feeling good about it.
This, I realized, is why I’d been successful when I was 8 years old, that time my mom took me to work with her and I persuaded that great big guy who’d left the community to start walking home to St Louis from the Central Valley in California to instead come back inside with me, all without ever exchanging a word.
The adults around me had already failed. The energy I brought to the interaction was respectful, kind, and loving. I didn’t pollute it with a bunch of words; because I had no idea what to say, I said nothing. I just looked up and held out my hand.
Believing I was on to something that would help both people living with dementia and their care partners, I began sharing what I knew: there are three crucial elements that must be included in every interaction if you want to get great results.
The Good Stuff Recipe
Somewhere along the way, I said “always bring the good stuff” to a live audience, referencing the three crucial elements. It resonated with the people in the room, probably because it sounds positive and less intimidating.
In explaining how to bring The Good Stuff, I kept emphasizing the need to focus on how the person living with dementia is perceiving the situation. I finally realized empathy was the word I’d been looking for. A fourth ingredient was added.
Compassion felt like the throughline of everything else. If we’re starting from a place of compassion, then respect, kindness, love, and empathy seem to just make sense.
Sure the recipe was sound, I continued sharing it and amplifying it whenever and wherever I could. And that’s when I realized there was still something missing.
Start with Yourself
It’s a universal truism that you can’t give what you don’t have. Dementia care partners don’t let that stop them from trying anyway. The quickest way to get an audience full of care partners to tune out is to even suggest they’re important too.
Want to see care partners get apoplectic? Just say they’re equally important as their person.
And yet, when a care partner takes a leap of faith and tries my “pissed to blissed” technique, they’re pleasantly surprised by the results. In a nutshell, it’s this: Start by always bring The Good Stuff for yourself.
My Favorite Technique
Try this is if you're feeling stranded at angry, anxious, frustrated, overwhelmed, freaked out:
I know, it sounds too easy. We're naturally suspicious of easy...especially in Dementia World, where it seems everything is, by default, hard. But trust me on this one.
As you exhale, visualize letting go of any emotion that isn't serving you or your loved one in this moment. You're making room to be filled with respect, kindness, love, empathy, and compassion.
Take a deep breath...
As you inhale, visualize bringing in the Good Stuff. See those five things as gifts being given to you from the Divine. Know you can have as much as you'd like. There's an endless supply.
Exhale, inhale. Keep repeating as needed--four is usually the minimum--until you feel the shift within. Once you've let go of emotions that aren't serving and are full of gifts you deserve, you're in a position to share those gifts.
And hey, if breathing is too woo-woo for you, remember: This too shall pass. This moment of feeling low, pissed, irritated, anxious, annoyed...it will pass! It may pass like a kidney stone, but it will pass. 😉
Anything that helps us keep people we love safe, and manage our own expectations so we can show up as the kind, loving people we really are rather than the stressed-to-the-max goobers we sometimes masquerade as--those are winners in my book.
But What About Patience?
A member of the Dementia Sherpa tribe recently wrote me:
I have a suggestion in reference to bringing the “good stuff:” The terms that are currently included: love, respect, kindness, empathy and compassion are of course extremely important and should never be forgotten.
But there is a crying need to bring patience to every encounter with a loved one with dementia as well. In a way, each term: love, kindness, respect, empathy, compassion — calls forth each of the other terms — all of which ideally should be freely given to (directed at) the person cared for.
Patience, however, is a whole other entity entirely: when you exercise patience, that particular action must be directed at one’s self as opposed to the other. In this fast paced high-tech culture of ours, patience is in very short supply (witness how upset people get if they merely have to wait in line for any length of time).
Patience, especially these days, needs to be mindfully cultivated and practiced because it is so critical to maintaining a caring and loving relationship with the one you are caring for. In short, patience requires exercising self-control in a way that the other terms do not. (Okay, I admit, I have an especially hard time exercising patience — and the lack of same has tripped me up and over the edge more than once in the recent past!).
So, should “patience” be added to the list of “good stuff?”
What I Focus On
If I asked everyone who knows me in real life to list the top 100 words that come to mind when they think of me, patience wouldn’t make the cut. Like every other human I’ve ever met, I prefer immediate gratification.
This isn’t to say I don’t understand (and even employ) the concept of delayed gratification. A dearly departed client said it best. She was referencing a handbag, but it could apply to anything, really, “I want it and think I should have it. Don’t you agree?”
Yes, Martha, my inner four year old agrees enthusiastically!
Many care partners have lamented their lack of patience to me over the years. What I’ve found is that when I focus on bringing The Good Stuff into every interaction I have with a person living with a neurodegenerative disorder, the need for patience disappears entirely. I’m not focusing on what I lack. I’m not focusing on what I need more of.
Instead, I’m focusing on emanating compassion, empathy, love, kindness, respect. I’ve made the conscious choice to fill up on all that a moment or two before I initiate the interaction. I make the conscious choice to breathe it in during the interaction. I make the conscious choice to share it.
It turns out when I’m focused on doing that, I not only stay in the moment with the other person, but things generally go pretty darn well. We both have a good experience. We often have fun, share a laugh, share a hug.
I don’t walk away from interactions feeling like I came up short, like I have yet another character flaw I need to work on. Witnesses to these interactions often remark on my “endless patience,” but I promise patience is the last thing on my mind.
My correspondent above makes great points about patience. I admire and encourage anyone who wants to mindfully cultivate patience in themselves. Especially because I don’t have the patience for it myself.
What I’ll keep cultivating is my ability to always bring The Good Stuff, for myself and others. And for today, I’ll call that good enough.
What do you think? Share your thoughts on patience in our private Facebook group or send me an email.
Dementia can last 20+ years. That's a long time to struggle with trial and error!
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