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Do you feel like running away?

You may have restless caregiver syndrome.

What’s that, you ask?

I may have made up the term, but I certainly experienced it firsthand.

Have you seen the commercials for restless leg syndrome?

They’re kind of quirky, and I’m not saying that it’s not a serious disorder, but it’s presented in a way that makes my own legs twitch! Nothing like an idea planted in your brain.

But that’s exactly what I felt like some days as I cared for my mom who had Alzheimer’s and Parkinson’s. I just couldn’t sit still. I wanted to run, to stay busy, to go, go, go.

I guess I was scared.

I was scared my mother would consume me.

I was scared that this was going to be my life from now on, and that by accepting it now, I was accepting it forever.

I was scared that if I sat still, thought too long, I’d realize it was a mistake, that this wasn’t what I wanted to do. I was scared I’d grow old and not have the life, the adventures, the memories and journeys I’d always dreamed of.

Restless caregiver syndrome happens off and on in the caregiving process. It occurs when you’ve given up your old life in order to care for your loved one. It’s also compounded by a sandwich generation lifestyle where everyone wants something from you all the time. And, if you’re female, you may be dealing with the oh so lovely change of life–men-o-pause. And, on top of that, you’re probably a boomer and thinking about your own future, i.e. finances, career, retirement, aging, etc.

You became a caregiver because your loved one needed you. You did it believing it was the right thing to do. You told yourself there were some benefits—getting out of a dead-end job, able to spend more time at home, maybe take better care of your own health, or begin that second career you’ve always dreamed of.

Only…

Caregiving isn’t quite what you’d thought it’d be. You’re bored. Stressed. Unmotivated. Overwhelmed by all the stuff there is to do, and how little you feel you get done. You have time (sometimes) but no focus, no initiative.

Your loved one certainly needs your assistance, but you didn’t plan on becoming someone’s personal butler, driver, maid, and cook. They also seem to enjoy your being at your beck and call—or they’re miserable, fussy, or constantly apologizing. You didn’t think all this emotional baggage would come in tow.

You‘re consumed by caregiving even when you’re not caregiving.

You’re fumbling in your own life. Directionless. How long can this go on? The years stretch out in front of you like a vast desert. Some days, sure, you feel on top of your game, but there’s also an underlying sense of sadness. You know where this is going to end.

A restlessness has built up inside you. You gotta get out. You can’t sit in that living room chair one more minute. You can’t scramble one more egg. But you’re stuck.

How to Combat Restless Caregiver Syndrome:

·       Play a game with yourself: if you were under house arrest, but you weren’t caregiving, what would you do? What resources do you have right at home?

·       If someone gave you three years to reinvent yourself, what would you do? Learn a new language? Take some classes and become a computer whiz? Sell your handmade jewelry online?

·       Create a structure you can live with. You call the shots. You decide when dinner is, you decide the med routine. If you want your loved one to go to bed at 7pm so you can have the night to yourself, then arrange it. Create boundaries you can honor that make your life easier.

·       Start planning for time off. Check into respite care; hire a CNA for $20.00 an hour. It may take you a while to get all this in order, but do your homework, find someone you feel your loved one is safe with, and start taking regular breaks.

·       Don’t use your take out for anything that you aren’t dying to do. Go for a mountain hike, antique shopping, to the local pub to watch a football game—anything that will make you feel as if you’ve truly taken a break. No errands. No combining. Time off is time for you.

·       Create a room—your bedroom, a spare office, part of the garage that is just for you. Make it your haven. Put a cooler in there with drinks, stock a mini-bar, and collect magazines only you like— and go there — alone. Your family and loved ones will respect what you respect—and they will run rough-shod over you if you let them.

·       Call a friend and vent for 10 minutes. Set the timer and then just go for it. After that, tell your friend to forbid you from any further complaining for the day. Complaining and whining and griping are good, but not when it’s a toilet bowl that never flushes. I mean that visual to be disgusting so that you’d STOP. Incessant thinking is unhealthy.

·       Use your fidgetiness and wear yourself out. Do something physical—put all your anger and edginess into it. Clean out the frig, scrub the bathroom tiles and get out the gunk around the shower door. Use your restlessness.

·       Find a safety valve. If you’re really about to blow your top, how can you get away? Do you have an emergency person? Can you take them to adult day care? Are they okay for a couple of hours alone if you really couldn’t take it anymore? Have a plan B—because sometimes, it all gets to be too much.

·       If you have siblings and you’ve been carrying this burden alone—then make the call and insist they help out in some way. Even if it’s paying for home help, then that’s a help. Don’t let resentment and exhaustion build up. Tell them how hard it is. Insist you get a weekend off every few months—and a week or two of vacation time a year. You only get what you ask for, so ask!

·       Don’t be a perfectionist and think everything has to be exactly right and exactly your way. If you do, you’ll be a slave to the mundane. Choose a few things to do well, and a few things to do lousy. Nobody ever died because the forks were sticking up in the dishwasher.

·       If your loved one is being ugly, then get in the car and leave. Even driving around the block helps. I used to walk out back, down the embankment out at the river—and scream. So what if the neighbors heard! Better they hear me scream than gunshotsJ They’re adults and can be alone for 5 minutes and they need to be taught that you will not be mistreated. Make that point clear.

You get what you allow.

Sometimes, you’re just going to feel restless as caregiver. You’re going to want to run, to scream, to change your name to Flo and become a waitress on some seaside pier restaurant (my fantasy, not yours necessarily).

When you feel like running, then run. Get out as much as you can. Even if it’s just out the front door and around the block. Hide, sneak out, stay in bed an extra half hour, stand in your shower until the water turns cold. Do what your gut is telling you to do–at least in some small way. If you let off the pressure valve, then maybe, maybe the whole thing won’t blow.

Trust yourself. Trust your journey and this process.

Later, there will come a time when you might not be able to “run,” so do it now. Trust that you will come back.

After your loved one passes, you’ll go through this all over again—there’ll be days when you just can’t be at home. It’s a part of the grieving process. There’ll be other days, or weeks that you can’t make yourself leave. Home feels safe.

Again, trust yourself. Trust that your body, your soul, and your heart knows how to heal itself.

~Carol D. O’Dell

Family Advisor at Caring.com

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon

www.mothering-mother.com

www.opentohope.com

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Caregivers are edgy creatures. Their nerves are shot. Rather, I should say that my nerves were shot.

I was impatient, even more impatient than a PMSing woman (all the time) when I was a caregiver and incompetent people, rude people, snippy people, and clueless people got on my “last nerve” as my Mama used to say.

Mother was “nervous,” as she liked to call it. I called it mean, but I was a kid and didn’t know how many irritating people there were in the world (to start with, her own daughter). She could lose it at any time, and honestly, even though I lived with her and knew her tirades, she could even surprise me.

I understand this now. I am a mother. I know how needling, pesty, drive you to your bitter edge your kids can be at times–not to mention husbands, pets, repair men, co-workers and the occasional cashier.

But I kept myself under control most days, and only allowed myself a “did I mean to say that?” outburst once a month, and to tell you the truth….it felt good. I firmly believe PMSing and menopausal women DO mean what they say. They just don’t have the guts to stand behind it the rest of the time.

Caregiving, Alzheimer’s and Parkinson’salong with the exhaustion, sleep irregularities, fights with my mother, needs of my kids, desires of my husband, and a non-listening medical person was more than I could take at times.

Twice during my caregiving years I let my rash, “hair on fire,” don’t you dare piss me off self blow.

Both times were with a a non-relative, non medical person (I used the page to rant, but I didn’t go ballistic with these two groups since I needed them to stick around). Both were expendable relationships.

Both did not respect or appreciate me. Both never even thought about my situation–or care.

Both were writer acquaintances (and my writing is too close to my heart and my perception of myself to have it obliterated) and both were thoughtless and unkind.

And I knew that my life was already hard enough. I knew I had to take up for me.

I knew that I needed kindness, support, encouragement, even truthfulness, but I didn’t need anyone making me feel like crap.

I’m sure I’ve been insensitive many times over, so I do realize they might both be perfectly fine people, but I needed to do this for me.

So I cut them. Just cut the relationship. It was the best thing I could have done. Usually, I’m a fixer, a peace maker, a suck it up kind of person. Forget that when you’re caregiving, your mind, heart and body is on overdrive.

I’ve seen them since–and I can’t say their life is any worse for not being in mine. But mine is better. I took a little control–for myself. 

I told myself that my family, my mother, my children, my marriage were all relationships I valued, and they were and are (at times) hard enough. Other relationships should be easy and supportive–and giving–and healthy. And if they’re not, it’s okay to let go.

I hope this story helps someone. Use your “nerves.” Use your exhaustion, your “hair on fire.” Make your life better any way that you can. If you make a mistake, so what?

 Quote:

“The best revenge is a happy life.”

~Carol D. O’Dell

author of Mothering Mother:

A Daughter’s Humorous and Heartbreaking Memoir

by Kunati Publishig

Available on Amazon and in most bookstores

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