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.

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.

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 their beck and call—or they’re miserable, fussy, or constantly apologizing.

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

Different personalities handle life, death, and caregiving differently.

We all have gifts to offer the world and to offer as a caregiver. \

Stop trying to be something you’re not.

Stop trying to be your mother.

There are things you’re good at things you aren’t.

Accept this and let go of the guilt. 

By examining your basic personality traits, you can capitalize on your strengths and accept what you can–and can’t do.

There are several types of personality tests such as the Briggs-Meyers and Kiersey Temprement scale. 

Let’s start with a simple one first. It’s actually based on the four humors of Hippocrates and is called Personality Plus by author and speaker Florence Littauer.

Here’s an easy breakdown of the Four Basic Personality Types:

Choleric: This is the commander-type. Cholerics are dominant, strong, decisive, stubborn and even arrogant.

Melancholy: This is the mental-type. Their typical behaviour involves thinking, assessing, making lists, evaluating the positives and negatives, and general analysis of facts. ‘

Sanguine: This is the social-type. They enjoy fun, socialising, chatting, telling stories - and are fond of promising the world, because that’s the friendly thing to do.

Phlegmatic: This is the flat-type. They are easy going, laid back, nonchalant, unexcitable and relaxed. Desiring a peaceful environment above all else.

Positives and Negatives

None of these types is specifically described as positive or negative - each having upsides and downsides. The book makes it clear that the characteristics are for observing and identifying, rather than judging.

• A Choleric is focused on getting things done, but can run rough-shod over others. They are decisive and stubborn, but are also natural leaders and like check lists and getting things done. They can also be charismatic and dynamic and tend to “take the air out of the room.”
• A Melancholy is a planner, making sure things happen, although sometimes they can paralyze themselves with over-analysis. Lists and “doing things the right way” are characteristics of this personality type. While quiet, they are also strong and stay on task. They are the ponderers and can also be great artists and enjoy being alone. They tend to make their own happiness and are easy to get along with.
• A Sanguine gets on well with people and can get others excited about issues, but cannot always be relied upon to get things done. They love interacting with others and play the role of the entertainer in group interactions. They have a tendency to over-promise and under-deliver. They are also inspiring and charasmatic and light up a room.
• A Phlegmatic is neutral - they tend not to actively upset people, but their indifference may frustrate people. They try not to make decisions, and generally go for the status quo. Phlegmatics are peace lovers and bring a sense of calmness to situations. They avoid stress whenever possible and are great at coping skills and solving problems–if you seek them out because they’re not likely to assert themselves. They don’t like being the center of attention.

Do you see yourself anywhere?

I do. I’m a mix of sanguine and choleric and with a dash of melancholy.

I’m one step away from being a party-hardy, but I do have my contemplative side.

I also see myself, sad to say, not delivering on all of my promises. Mostly because I promise too much.

I can entertain a room and love telling stories, planning an event, and rallying a cause.

By  knowing this about myself, I’m able to recognize when I am, or I’m not at my best.

I was also able to assess my mother’s personality–not hard to do–choleric and then some.

I could see why we butted heads. Two extroverts, entertainers, both of us know-it-alls–under one roof. No wonder we had a few fireworks (cannons) go off. No wonder we needed to get out and be with other people–only caregiving and Parkinson’s and Alzheimer’s isn’t exactly a great mix for mingling in a crowd.

Still, I could watch my mother’s face light up whenever we had company.

I can still see her long, elegant hands (she always had great nails) expressing a point.

Even her natural speaking voice had a certain cadence to it. You listened when she talked.

She liked herself, and that makes others like you as well. Some people found this annoying, but perhaps they felt threatened by such a formidable woman. While I’m at it, I can’t fail to mention that she was BOSSY, irritating, and demanding! She wouldn’t mind me saying these things because she wouldn’t consider them a detriment. That’s how things get done, she’d say.

In the end, I have to believe that I was able to offer my mother the homecoming she desired. She died at home, with me by her side and with hospice to guide us.  I fought exhaustion and doubt because I have the personality to go and go–if I believe in something. We stuck together–through fights, medical setbacks, and long, dark nights.

Her memorial service had a presentation of her dynamic life–as a minister, mother, wife, radio and television evangelist, and I was able to give her this because I understood her and how she would want to be remembered. I used my gift to tell stories to remember her. That’s why I wrote Mothering Mother, to capture who she was, who we were.

Learning about your personality and others can help when things get rough.

When I get out of my element, I say that ”my circuit breakers are popping.”

That’s when I’ve created or become a part of a too stressful situation and I begin to lose it.

I forget things, drop the ball, the house gets totally chaotic–I”m even later than usual, and I get fussy.

I mean really fussy. I’m usually a laid back, happy go lucky gal, and when I get mean–something’s off.

I know this about me, and it really helped in dealing with caregiving stress.

I knew what to watch out for. I knew what I could give my mother and my family–and what I couldn’t.

You can’t go changing yourself, so don’t try. Not that we shouldn’t improve, but don’t plan to go out and get a lobotamy.

You pretty much have to go with the Popeye motto, “I am what I am.”

So accept your basic personality and learn to make the most of it.

For us Sanguine’s and Cholerics–hey, we can throw a great party, get people involved in a cause. Make people smile and laugh, make a room look gorgeous, a meal, sumptous, and call up an army in time of need. Those are good things.

What we can’t do for you is pay attention to every detail, plan for every pitfall, or deliver on our gazillion, hair-brained ideas. We do care when we let people down, at least I do.

What this means is that we need each other. I need those quiet, consistent friends to help me stay on course. I need a phlegmatic to calm me down when I get too worked up, I need a melancholy daughter to ask me how I’m doing, what I need–and then take the time to hear me out. I need my choleric daughter to organize my office while I listen to her fume about the injustices of the world. I need my melancholy, phlegmatic husband to pay the bills, put money in our 401K and run my beautiful website he designed. Does he drive me crazy with his skepticism and practicalities? Sure does. But my kite-flying high ideas drive him bonkers too. Still, we make a good team.

Isn’t it wonderful how we can look around us and see how we all fit together?

Caregivingis tough, but no matter which personality type you have, you bring gifts to the table, to your relationship. It is no mistake that you are you mother’s daughter, your husband’s spouse, that your sister happens to be so opposite of you sometimes you want to scream–and then other times she balances you out, and smooths over siatuations in a way you couldn’t have.

By understanding better who you are, where your soft spots are, what you’re good at–you can offer your loved one unique and just what they need.

Accept your personality and your relationships as they are meant to be.

~Carol D. O’Dell

Family Adviser, Caring.com

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

www.kunati.com

www.Caring.com

www.opentohope.com

One of the practices hospice recommends is to ask your loved one’s fforgiveness–and to offer yours.

I’ve been thinking about this all day. The importance, or power of forgiveness and how it might keep us here on earth, lingering. Everything hospice does is to make passing easy, comfortable, and to give a sense of closure to everyone.

And here’s this forgiveness“issue” needing to be addressed, perhaps for the first time in many family member’s lives–and for others, it’s a reassurance, a final healing of many healings we all must go through in life.

Isn’t it amazing that a lack of forgiveness can hold you to this world when your spirit is ready to leave?

It doesn’t even matter if your loved one is in a coma, or if they have cancer and are on morphine, or if they have Alzheimer’s or some other neurological disorder that may make you feel that they are beyond understanding. They’re not. You’re not. I believe that forgiveness, and the ability to give and receive forgiveness is at a cellular level. What we think, dwell on, harbor, hold on to, refuse to let go of–it has to go somewhere. It enters our muscles, or bones, or organs, and permeates all that we are.

I’m not implying that those who linger on and on, for whatever reason have “unforgiveness.” I’m not saying that at all.

Sometimes the hurts we harbor are from blantant acts of cruelty while others bubbled from years of silent sorrows. Either are weights to our souls.

What’s it mean to forgive–and be forgiven?

I was brought up in a Christian based household, and unfortuately, some interpretations of the Bible have us tangled in sin and shame. We create a trap we can’t seem to find our way out of. Not all faiths do this, not all families or churches do this, but I know that it took me some time to realize God doesn’t need to do the forgiving, we do. 

God’s forgiveness of humanity, of each individual’s life is limitless, and easy. He’s not into grudges, resentments, and guilt. We are. Unfortunately. We’re the ones that have to “work at” forgiveness.

“Forgiveness means being able to finally say, ‘thank you for giving me the insights I’ve gained from this experience.’”

I heard this from one of the founders of the book, The Secret, and no matter how you feel about that subject, this quote turned things upside down for me–in a good way.

That hit me in my gut. I thought of rape victims, family members of murder victims, family members of people who have overdosed or committed suicide, of all the lives taken by war and disease…and yet all of us, all of us must eventually come to our own end, to a place of giving and receiving forgiveness.

No matter what has been done to us.

No matter what we have done.

We will all be there, in our final days and minutes of passing–and forgiveness stands guard of the gate.

***

I can only speak of my own life here. My own hurts. I’ve had some. And it took a long, long time to come to this place. I’m not necessarily grateful for the experience, but I am grateful for what I’ve learned. My deepest hurts and shames, both of my own doing and that done to me, what I’ve learned has been a greater tenderness for life, a few stones of wisdom to carry in my pocket, and the ability (occasionally) to discern what’s really important.

This is what I’ve learned. What I’ve gleaned from a few very dark nights.

***

I can’t begin to postulate as to how to do this, or when, and I’m not going to lecture anyone here. If you’re reading this post, maybe it’s for a reason. You’ll know when you need to look at something again. You’ll know–life has a way of revealing what it is we’re supposed to deal with, examine.

It’s okay if it isn’t right now. If the wound is fresh, then most likely, no. You’ll have time. This isn’t something to fix or check off a list. Forgiveness is rarely instantaneous, and it can’t be forced.

Again, for me, I get lots of “passes at” forgiveness. I’m usually a last minute packer, but this is one area, I hope not to leave to last minute.

It’s like circling a mountain. Each time I find myself at the same location, looking at the same old issue, but sometimes, my elevation is a bit higher. I do a little heart work, see it from a different perspective, and then I keep walking–knowing that I’ll circle the mountain again, and I’ll have a new opportunity. Until then, I need to just live.

***

If you or your loved one is at this last juncture, and this question is one that needs to be addressed, know that this isn’t your last time. Heart work, healing work continues. Two bodies don’t have to be on earth to continue learning and forgiving.

But take this moment, say the words, “I forgive you. Will you forgive me?”

Whether it comes out just like that–or in some other form, words or no words, allow the power of forgiveness to change you.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon and in most bookstores

www.mothering-mother.com

Forgivess quotes:

Forgiveness is the giving, and the receiving, of life.     George MacDonald

Forgivess is the frangrance the violet gives when the heal has crushed it.    Mark Twain

Forgivness is the final form of love. Reinhold Niebuhr