I recently returned home from a 10-day visit with my mom and stepdad at the memory care unit, and I’m utterly and completely exhausted.
Depleted. Trashed. Insane. (For those of you who are 24/7 caregivers, my giant 10-gallon hat is off to you. You are my heroes).
You know how I feel, right? Like the only reasonable thing to do is to sit in a corner and rock – which I did. Then I moved on to my next pacifying activity – cookies and chocolate. None of which are great coping mechanisms. So instead, I powered up my Dementia Crash Cart and resurrected myself.
What’s a Dementia Crash Cart, you ask? And more importantly, how the hay do you get one?
Well here you go — one of your very own — to keep handy for your flat-line days. Those days when you are so down and wiped out that going to the bathroom seems like too much work. Before you reach for the Depends, try your Crash Cart first. You’ll be happy you did (and so will everyone around you.)
5 STEP CRASH CART:
1. TAKE YOUR VITAL SIGNS
Do you find yourself wishing you were the drunk, homeless guy on the park bench, just so you no longer had the responsibility and burden of caring for your loved one? Or for that matter, any responsibilities at all? Oh, wait…maybe that’s just me. But when I have crazy runaway thoughts like that, I have to stop and take my pulse. Because wanting to be a drunk, homeless guy is nuts, which means I’m nuts.
And who wouldn’t be nuts, dealing with what we have to deal with? I mean, most days I’m just seconds away from climbing to the tallest point possible, flinging open a window, and screaming at the top of my lungs: I’M MAD AS HELL AND I’M NOT GONNA TAKE IT ANYMORE! But when I get the “justified anger crazies,” I am NOT a happy camper. So what do we do when living in a park with squirrels or randomly screaming in public (or both) actually sound like reasonable life goals?
We take ourselves to a 15-minute pity party, that’s what. So, let’s go.
- Get 3 sheets of paper, a pen, highlighters, a box of crayons, and a kitchen timer. Oh, and that foam bat your therapist had you buy? You’ll need it, too.
- Set the timer. In that 15 minutes of pure, unadulterated self-pity (we’ve earned it and I say TAKE IT), write down on a piece of paper as many things as you can think of that COMPLETELY SUCK about your current caretaking circumstances. I know…we could do this all day, but we’ve only got 15 minutes of fun this time.
- Got your list? Great. Now highlight the ones you can actually do something about. Pick a highlighter color you really like — this is a party, after all. If you’re really feeling spunky, put on some dance music while you’re at it.
Write “ACTION” at the top of another sheet of paper, followed by this law of nature: FROM ACTION I GET RELIEF.
List the highlighted items in order of relative suckitude (suckitude \’suhk-e-tood\ n a numerical quantitative measure, usu. expressed on a logarithmic scale, of just how bad something sucks). Now, make a plan and get after it. Change the things you can. Take as long as you need to make the changes, but do it. You. Will. Feel. Better.
On another sheet of papers, write “CAN’T DO SH*T ABOUT” or just “ACCEPTANCE.” Get the ugliest color out of the crayon box (I recommend Asparagus, Raw Umber, or Beaver) and scrawl down the remaining items. Use your non-dominant hand so it looks crazy and out of control, because that’s how this list makes us feel. Now the fun part: burn the list. Or, if you’re a recovering pyromaniac, shred it. Why not? You can’t do anything about the list anyway. Let it go. That’s what acceptance is: recognizing the utter powerlessness over a situation and then saying “Uncle.” As in, get the hell out of my head. As in, you’re not the boss of me anymore. As in, enough already. This would be a good time to get out that foam bat. Use as necessary. Caution: best used against a mattress or other soft objects, not your computer, your phone, or significant other.
Need more help? Check out this article by my amazing coach, mentor and friend, Jennifer Boykin of Life After Tampons (www.lifeaftertampons.com): Obsessions – The Quarter-Hour Solution. There’s so much wisdom on her website – but she did this just for us! Wow…we are special!
2. CALL CODE BLUE
That’s right. Scream it. HEY!! I’M IN TROUBLE HERE!! Do that with your family, your friends, your dog, cat or hamster. If none of those apply, scream it to your houseplant, even if it’s fake. But just do it.
We need to admit we’re beat up and need to rest. Really. It’s ok to do that. We’re in an emotional crisis and need critical care. (Bring the M&Ms…STAT). Having a loved one with dementia creates such a hodgepodge of emotional pain sometimes we can’t even see ourselves clear of the misery.
So, who YOU gonna call? (You totally just said “ghostbusters,” didn’t you?) Here’s some suggestions. I’m pretty sure I’ve called everyone one of these folks more than once:
- significant other
- sibling (blood, step, adopted or otherwise)
- Executive Director of whatever facility your loved one lives in
- social worker
- owner/boss of home health agency helping your loved one
- pastor / priest / rabbi / priestess / swami (whatever floats your boat)
If none of those apply (really? think hard…), then write a letter to yourself describing the help you need. Then think again. Help is out there. If you’d like, send the letter to me at firstname.lastname@example.org. Maybe the OBC community can help.
If you need some more help learning to ask for help, I’d suggest you start by reading Help, Thanks, Wow: The Three Essential Prayers by Anne Lamott. You’ll learn amazing things while laughing out loud (my favorite combo). Note: This will not be the last time I reference Anne Lamott. She’s kind of my idol.
Next, repeat after me: Misery is optional. Opt out.
Decide to be happy. Think about it. You really can do that. Try my trick — I call it Sound of Music Therapy. Name 5 of your favorite things. 5 things that make you happy, that make your life feel amazing (even if only for a nanosecond). Here’s part of my list (yes, it’s different from Maria’s, although who doesn’t love schnitzel with noodles?):
- vintage cowboy boots
- ice cold Dr. Pepper
- puppy breath
- belly laughs
- The Andy Griffith Show
Now, sing your list in your best Julie Andrews’ voice. Just kidding.
Yeah. It doesn’t have to be that you solved world hunger or stopped global warming — it can be really basic. Something that makes you happy and grateful. Do it. (Just please don’t sing that Bobby Farrin song that shall remain nameless, lest we all wind up with it playing endlessly in our heads. Oops…too late).
Need more help? Check out this article 7 Reasons to be Happy Even If Things Aren’t Perfect Now at one of my favorite websites, Tiny Buddha, www.tinybuddha.com. There is a wealth of information there about getting happy, no matter what.
3. START CPR
If you’re like me, you spend so much time in your life caring about and for someone else, you forget to take care of yourself. Then we wind up in the corner, comatose and rocking, because we forgot the rule taught to us by flight attendants everywhere: Put on your own oxygen mask first.
For me, that means taking some quiet time daily, and doing some form of exercise (ok…I don’t do that daily) – even if it’s a simple walk down the street. Move your feet – modify your mood. I don’t know how many times I’ve had to prove that statement to myself. If I make myself move and sweat a little, the madness (of the stomping, cussing and throwing things variety) tends to pass. Or at least diminish greatly. Try it.
And sometimes, taking care of myself means NOT calling my mom. Or NOT talking to a family member about the meds or the issues with the facility or doctors or whatever. It means taking care of me, whatever that means that day (and yes, sometimes that means eating 15 Oreos).
Now, let’s get cracking:
- Grab a piece of paper and write down 5 ways you don’t take care of yourself. By each one, write 1 simple thing you can do to fix it.
- Then list 5 things you’ve always wanted to do for yourself, but for whatever reason, haven’t ever gotten around to. Pick 1 of those, and make a plan to DO IT.
4. CHARGE THE PADDLES. YELL CLEAR!
You’re about to resurrect yourself. It’s time to get going again. Make sure everyone knows they need to stand back. There is life after dementia. It’s a disease that rocks the entire family, some more than others. It’s exhausting and frustrating and heartbreaking, and there are days I feel like I’m not really living, I’m just surviving. That doesn’t work. Don’t settle for survive – thrive.
It’s ok to have a great life even though your loved one has dementia. It’s ok to go on vacation, laugh your head off, relax, play golf, have dinner with friends, etc., even though your loved one can’t. It’s ok to feel joy and happiness.
My mom is sick with an incurable and progressive disease. I hate that. But I can’t change it. And staying miserable won’t make her better. But deciding to thrive in spite of it all sure will make us better.
Coco Chanel said “My life didn’t please me, so I created my life.” We can all follow Coco’s lead. So here’s what we do:
- List all the people you feel you need to get permission from to live your life. Are you on that list? If not, add your name to the top.
- Now make a big “X” through all other names other than your own.
- Go to the nearest mirror and repeat after me: I hereby give myself permission to live my life. Doesn’t that feel good?
- Now get specific. You know that list of 5 things you made earlier? Things you wanted to do but never got around to? Pick one and repeat after me (yes – you’re still looking in the mirror): I hereby give myself permission to [insert fabulous thing].
You’re on a roll. Not only are you taking care of yourself, you’re living your own life. YAHOO!
If you haven’t already discovered Danielle LaPorte (www.daniellelaporte.com), this would be a great time to do so. I’m so inspired by her, and love her article In Honour of the Fact That Life is Short.
5. ZAP YOUR HEART BACK TO ITS NORMAL RHYTHM
We’re going to get our minds right. We’re going to take a deep breath and calm down. We’re going to sit quietly until we can hear our heartbeats return to normal. We’re going to take care of ourselves so we can keep being there for our loved ones suffering with dementia.
We’re going to thrive in spite of dementia – because we deserve to. We’re going to laugh. We’re going to eat good food, and drink whatever it is you drink. I’ll have San Pellegrino with lemon please. Because, yeah…I drank enough in my previous life to last a lifetime. But I’m toasting with you. Here’s to our new mantra: Rest. Repair. Repeat.
We’re going to learn to be happy. Need help? I did, so I found this article from The Huffington Post: The Habits of Supremely Happy People.
This is about progress, not perfection. This is about learning to be still in the middle of chaos, to be happy in the middle of madness. Don’t expect to turn into the Dalai Lama overnight. But make a conscious effort to slow down and take care of you. One day at a time.
When in doubt, take a nap. When in fear, tell someone. When in despair, take a walk. Then watch cartoons. Sit on the floor and eat popsicles. Tomorrow is a new day.
Onward and upward!