Is Your Tribe Serving You?

I wrote the original version of this article (Which Is Your Tribe?) about 18 months ago, back before the concept of tribes became politically-tainted.

More recently, it occurred to me that the better question is, Is your tribe serving you? We all identify with various groups; that’s natural. Some, like race and ethnicity, are beyond our choice.

Others, like those I explore below, are within our control although we may not consciously realize it. As you read, ask yourself if your tribe is serving you. If not, check out the other options.

 

Which Is Your Tribe?

I’ve been privileged to work with over 1,100 people living with dementia and their families over the course of my career so far. I’ve met some wonderful people, people who’ve had a profound impact on me and forced me to see beyond my own field of vision in a particular moment.

And of course I’ve also met some people who confound me to this day. Over time, I’ve identified what I think of as seven distinct types, or tribes, of people. Everyone in these tribes has at least one thing in common: they’re closely connected to a person living with dementia.

Every tribe, no matter which of the seven, has two other things in common: what everyone outside that tribe thinks is going on, and what’s really going on inside the tribe.

Which is your tribe?

 

The Lalalalalala-ers

How It Looks To Others

These folks appear to be in complete denial about what’s happening with their loved one. They have their fingers stuck in their ears, singing “lalalalalala,” and say things like “Oh, it’s not that bad, really.”

Lalalalalala-ers are known for collapsing in exhaustion and being knocked around from one crisis to the next like a pinball.

What’s Really Going On

You know, but you don’t want to know–because it’s too painful, you’re exhausted, and you’re not sure where to turn for help. You may not even know what kind of help you need, and the idea of trying to figure all that out is too overwhelming to contemplate.

 

The Hollywood Tribe

How It Looks To Others

Hollywood folk say things like, “I think she’s just pretending to have dementia. I think she’s making it up to get attention.” They can appear both clueless and heartless, and are often accused of being self-centered.

What’s Really Going On

Underneath the make-believe stance is most often an adult child who’s been unwillingly thrust into the role of care partner by a parent who has a long history of being an awful parent: narcissistic, manipulative, controlling, and/or abusive.

Now your parent is frail, elderly, and living with dementia–and you, the grown-up, are expected to magnanimously let bygones be bygones.

You’re encourage to drop protective boundaries, and jump enthusiastically into the role of primary care partner. There’s a (very good!) reason you’re resistive to that advice.

You may not know it, but you don’t have to get sucked into this again; there are professionals who can take this off your shoulders. (Think professional guardians or care managers.)

 

The Yeah-Buts

How It Looks To Others

No matter the problem, the Yeah-Buts’ answer to the solution (any solution, every solution) is “Yeah, but–.”

They assure me they’ve tried everything and done everything, but nothing ever works. In fact, nothing ever will work. And no one understands. Certainly, no one has ever suffered in the manner they’re suffering.

What’s Really Going On

You’re part of the heartbreaking 30% of family care partners who will never accept help. You’re so overwhelmed, sleep-deprived, and heartbroken that you’ve lost all hope that anything could ever change, that anything could ever get better.

The thing is, deep down in your heart of hearts, I think you have a tiny little battered-up shred of hope, because I keep meeting you at dementia-related events. I think you really do want help, but everything looks so upside down that you’re stuck.

 

The I-Wish-I’d Tribe

How It Looks To Others

They say things like, “Where were you when I was going through this with my parents?”

“I wish I’d known ‘x’ didn’t work. I wish I’d known ‘y’ gets better results. If only I’d known ‘c’ was possible. If only I’d known I didn’t have to do ‘m.’ I wish I’d known you existed when I was going through this!”

What’s Really Going On

These people are exactly as they appear. Luckily, members of this tribe tend to freely share their experiences and learned-the-hard-way wisdom; pay close attention when they speak.

 

The Scary-Fierce Advocates

How It Looks To Others

Think Shirley MacLaine in Terms of Endearment at the nurses’ station. These are the people who will crawl through glass and walk through fire.

They’ll do whatever it takes to make sure their loved one has what he needs. It doesn’t matter how scared spitless they are, or who or what they need to steamroll to get it done.

What’s Really Going On

Loving, loyal, and fiercely protective, you could be an even more effective advocate with a bit more finesse. Use more honey and less vinegar, and you’ll get your way more often and more timely, with way less collateral damage.

 

The Let’s-Do-This Tribe

How It Looks To Others

This tribe knows fact from myth. “It’s all just so awful and there’s nothing I can do about it!” is a bunch of hooey, and they’re not having it.

These folks believe there’s always something that can be done. They don’t settle, and they don’t leave any rock unturned. They want (expect, demand) results!

What’s Really Going On

You’re super easy to help, because you’re always ready to roll. You’re all about taking action. You take to heart the experience and wisdom of the I-Wish-I’d tribe. Seeking help and combining it with the raw passion of the Fierce Advocates, you get things done without the messy side effects of a bull crashing through a china shop. Mwah! I love you guys!

 

The Teeter-totters

How It Looks To Others

This tribe is on a teeter-totter, often suffering from information overload. Should they listen to their best friend’s mom’s stepsister’s niece’s co-worker’s ex-wife? Or the article they just found? Or the speaker they just heard?

Overwhelmed with too much input, the easiest action in the moment is…no action.

What’s Really Going On

I just want to hug you, because you need a hug! You’re getting tossed around like you’re crab fishing in the Bering Sea during a hurricane. You teeter because you want to be part of the Let’s-Do-This tribe.

It looks mighty attractive, and they seem to get great results. But you totter, afraid the Yeah-Buts could be right: maybe you really have tried everything already.

Here’s the thing, though. “It’s all just so awful and there’s nothing I can do about it!” has different endings. If you push away help, then it’s fairly easy to say, “See, I told you so! It’s all just so awful, and there’s nothing I can do about it!” That’s also known as a self-fulfilling prophecy.

The Let’s-Do-This crowd says, “Wait, what do you mean there’s nothing I can do? That doesn’t make any sense. There must be something!”

They find one thing that could help, and do that thing. And that leads to the next thing, and they do that, and that works, too. They keep moving forward down this path, meeting up with even more like-minded folks along the way, accepting guidance and wisdom and helpers pointing them in the right direction.

 

Who’s The Boss of You?

If you’re tired of circumstances being the boss of you, here’s my invitation to you, Dear Teeter-totter (and Lalalalalala-er, and Hollywood, and Yeah-But, and Scary-Fierce Advocate): let’s try something different.

What do you have to lose, if what you’re doing now isn’t working? Let’s jump over to the Let’s-Do-This tribe. Let’s give it a try, take it out for a spin. If it doesn’t work, you can go right back to where you are today.

If even a little, teeny, tiny glimmer of a voice inside you thinks there just might be a better way…well then! That’s really exciting! Welcome, and Let’s Do This 🙂

 

Take My Hand And We’ll Make It, I Swear

Here’s how we get some momentum going in the right direction: one step at a time. Once you’ve made a decision to change what isn’t working, I know it’s so tempting to fall into despair when you don’t get immediate results. Anyone who’s ever been on a diet feels you.

Stick with it, though. Here’s how it works, this one-step-at-a-time business: click on a link that looks like it might address your issue, and then follow the tips you find there.

Show up to a support group, tell your story, and listen to others’. Take what helps and leave the rest behind.

Breathe, sleep, eat, and pray. Make a call. Put one foot in front of the other. Ask for what you need and then be willing to receive it.

Need help? Reach out. I’m right on the other side of your screen.

Which is your tribe? Have you ever changed tribes? Share your experience in the comments below.

 

hristy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.