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A couple of years ago I had a major talk for a college coming up. Mothering Mother (my book) was the spring selection read for the entire college. I was invited to not only come give a talk, but to also visit several departments, talk with students, a luncheon talk with the staff, a one-woman play in the community, and any other publicity (television/radio) that might arise. Pressure. I had to ON. I needed to be prepared, present, interesting, educational, entertaining and all in all, a razzle-dazzle kind of gal for all of the upcoming events. And that’s when it hit me: I need to rest.

This isn’t just woo-woo. Rest is crucial to creativity. A recent study out of Harvard Health shows a direct correlation between creativity and rest. A group was given a complex problem to solve and then divided. One half of the group was told to work on the problem all day. The other half was encouraged to nap. Not only nap (not just a ten minute break), but were allowed to rest long enough to enter REM sleep. You guessed it. The group that napped showed a 40% cognitive improvement in problem solving. “Those whose naps were long enough to enter REM sleep did 40% better on the test than nappers who didn’t get any REM sleep and non-nappers. Rather than simply boosting alertness and attention, REM sleep allowed the brain to work creatively on the problems that had been posed before sleep.”

No wonder Google now  encourages naps. Other great nappers include Albert Einstein, Salvadore Dali, Winston Churchill and Thomas Edison.

Salvador Dali

Back to my story: I spent two months (or more) preparing for the various components of my upcoming events–preparing  posters, writing blogs, tapping into social media to help promote the event, lots of phone calls, printing of new materials, practicing endless hours so that my talks were seamless–and yes, plucking the wiry eyebrows and checking off a rather formidable list of personal hygiene items.

But as the time came closer my world grew quiet. I stepped aside from other commitments. I spent time in my garden. I rode my  bike. I took naps. I envisioned myself fully present with folks who needed me not only to talk, but more importantly, to listen. Every time an anxious thought entered my being I imagined us (students, professors,  community  folk) in a circle laughing, talking, sharing, reading, crying. I decided that going to these events rested and fully present was the best gift I could give myself–and everyone else. In the words of Elizabeth Gilbert in Eat, Pray, Love, I wrapped us in love and light.

So…how’d it go?

Amazing.

I was received with kindness and ease. I was treated with respect and appreciation.

I was able to handle several days of a busy schedule and welcomed each event and each  group of people with joy, sweetness and intention. It is truly one of my best “author” experiences that will forever cherish. And I don’t believe it would have turned out so well if I hadn’t tapped into the secret of rest.

Rest doesn’t mean sleeping (although it includes sleeping).

Rest is a state of regeneration.

Our brains are “free” from our consciousness (and  critic) while we sleep. Solutions can “come to us,” when we stop trying so hard.

Rest doesn’t just mean catching some zzz’s. It’s whatever feeds your spirit.

Clean water, long walks, talking with people who invigorate your  mind and spirit.

It might mean creating a meal, deadheading a bed of flowers, bird watching all afternoon, pouring through magazines and surrounding yourself with  positive images. It might even mean addressing some minor irritations that are sapping you of your thoughts. It’s also body care–yoga,  stretching, getting a massage, swimming, catching up on dental appointments, perhaps doing a juice cleanse.

It means time for quiet. For  reflection. For envisioning how you want to feel at whatever is coming up for you. I wanted to feel deeply rested, present, and have the energy to give myself wholeheartedly to this endeavor.

Flash forward three years:

New opportunities are swirling around me. Several possibilities at once.

My head is spinning and my first thought is:

“Whew! There’s a whole lot about to happen–I better rest!”

 

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In Marianne Williamson’s book, Divine Compensation, the author talks about a time when she lost a large sum of money because she didn’t properly market a presentation that meant a great deal to her. Crying in her father’s arms she told him that she’d lost $10,000, and she muttered how she was ever going to recover financially or reputation wise from this catastrophe. He just smiled and told her to say, “It’s okay. I can absorb the loss.” That got me thinking about a different kind of loss. The loss we endure when a loved one dies.

It hurts. It sends us reeling with pain, regret, guilt, and plain ole’ missing someone so dear to us. Sometimes the death of our loved one seems so unfair. The death of a child is beyond my ability to even comprehend. We lose loved ones in car accidents, too soon to cancer, and sadly, to suicide. Such losses seem truly unbearable. How do we even begin to absorb a tremendous loss?

First, there’s no right–or wrong–way to grieve.
It just is. I’m not about to give a lesson on grieving. It’s personal. It’s primal. And all I can say is that your body and spirit probably know how you need to do it–and it might take longer than you think, and it will probably take you to some pretty dark nights of the soul.

What is clean pain?
Clean pain, according to the Association of Contextual Behavioral Science, is when we accept pain. We don’t try to make it more–or less–than it is. We acknowledge it. We let it take us. We know that we will be in pain for a time. But we also expect the pain to subside. We don’t add to it–by fighting it, by denying it, by blaming or demanding or asking “Why me” a thousand times. We choose not to dwell on it, growing more and more anxious, creating scenarios that may never happen. We simply know that we are of this earth and that there will inevitably be times of physical and/or emotional pain. In other words…we absorb it. Let it in but see our souls as a sieve. The excess pain that cannot be taken in will be sifted and allowed to leave.

It’s easier to have clean pain when death is expected. I grieved my mother’s diminishing life and her forthcoming death long before it got here. She was 92. She had Parkinson’s, Alzheimer’s and heart disease. I did not wrestle with the fact that it was her time to go. I tried to make her last months comfortable and meaningful. I stood as they wheeled my mother out of our home. I had spent the last three weeks by her side assisting her as she passed over. It was grueling. It was not easy by any means. But it was right. I stood in the driveway and watched them lift the gurney into the Hearst. I watched as the taillights left my view. I bundled her sheets and walked to the garbage. Then I walked down to the river. I cried and I breathed. My last parent was gone. Not only did I grieve her. I grieved the shutting of this door. The next few months felt as if I had been charred in a great fire. I felt antsy and useless. I floundered and waited for hope, for life, for meaning to return.

As far as clean or dirty pain. My mother’s passing was clean. And since that time I’ve lost others I love. It’s not always a clean pain, but at least I am aware that that is what I choose. Not to fight with death. To absorb the loss. My heart and mind is boggled at times. I can’t fall into the quagmire of the whys. There is no why that will make sense to a hurting, grieving, all encompassing loss.

But I do know that the more I allow, the more I absorb the losses that come my way, and the more that I (to quote Byron Katie) “love what is,” the more at peace I am.

Linda Ronstadt announced to AARP that she has Parkinson’s–and can’t sing a note. Linda is the voice of my youth. I sang Desparado more times than I can count. You’re No Good, Don’t Know Much…and part of me is sad to think that this song bird is silenced. In the words of a fellow Parkinson’s thriver (he’s more than a survivor), Michael J. Fox, “Parkinson’s a disease that keeps on giving.”

We know that Parkinson’s causes hands to shake and feet to shuffle, but there’s a whole lot more going on. It’s a neurological disease that affects the brain and the nerves–and nerves serve as a highway that signal to the body its movements and function.

Parkinson’s is something that I know a thing or two about. My mother had PD (as she called it) for the last ten years of her life.

What is Parkinson’s?
Here’s a simple lay-person definition.
You get Parkinson’s when your brain doesn’t produce enough Dopamine, a chemical it needs to help the firing mechanism in your nerves. Without enough Dopamine your nerve endings don’t get the message of what to do. That causes all kinds of problems. Parkinson’s medication is mainly a synthetic type of Dopamine. It usually relieves the symptoms for a few hours but must be taken regularly. It never fully eliminates the problem, but it helps, and works best if taken on a regular schedule. Some days are better–or worse–than others. No real rhyme or reason…

According to Mayo Clinic Parkinson’s symptoms include:

Tremor. Usually it starts in a limb–and it starts at rest–a shaking leg, “pill rolling” rubbing your fingers together repetitively), head movement, knee bouncing.
Slowed movement (bradykinesia). Known as the Parkinson’s shuffle. Walking, getting out of a chair, cooking, dressing maneuvering across a room are all affected. Changes in flooring can virtually freeze a person with Parkinson’s since the brain is trying to process how to handle it–giving it another overwhelming task to perform.
Rigid muscles. Muscles become stiff and range of motion can be limited, so lifting your hands to put on a shirt can be difficult, or bending. Soreness can also accompany the stiffness since the muscles are working so hard and yet can do so little.
Impaired posture and balance. Your muscles are misfiring and grow rigid and this can lead to becoming stooped over. Balance is a HUGE problem with those who have Parkinson’s. Not only do they feel imbalanced, but because of their uncooperative and stiff muscles fall hazards are common. This can lead to needing someone in the home or traveling with the person with PD in order to prevent a devastating fall.
Loss of automatic movements. Known as the Parkinson’s mask, a person with Parkinson’s may lose their ability to blink, smile, use gestures when talking or show any emotion, which can affect their communication needs and relationships. They also might not swing their arms when they walk, which also causes an imbalance.
Speech changes. Many folks with Parkinson’s find that their voice grows softer. They may also slur, blurt or not be able to maintain a natural rhythm or tone to their speech, and they may lose their ability to sing and have a pitch to their voice.
Writing changes. Most folks with Parkinson’s find writing a challenge. Their handwriting grows smaller and eventually illegible.

Is there any good news?
Yes, there is!
I won’t kid you. This is one tough disease that affects every aspect of your life. It takes enormous fortitude and patience from you, the person with PD, and from your family members whose lives are also affected. You may (you will in time) have to give up driving, perhaps even cooking (how come they never recommend you give up cleaning?) and you may need help getting dressed, going to the doctor, and you might need to consider not living alone. All that is overwhelming, but I ask you to look for every possibility that some good can come out of this.

So, here’s the good news.
You need people. That’s a good thing. You get a buddy to hang out with. We need to be needed, so trust that whoever is in your life to help you is there for a reason, and that they’re getting something out of it, too.
You haven’t lost your sense of humor. If you have, go find it. It can get pretty darn hilarious trying to get your shirt on for 20 minutes only to find that you have it on backward and inside out–and you kind of like it that way!
Embrace the chaos. Curse, cry, scream, laugh it off. It’s your life, so hell, make the most of it.

And one good thing–you can dance.
I’m not kidding. Dancing, yoga, tai chi are all things you can do. Ironically, your brain can actually grab onto the flow of music and you can move with fluidity.

Let me tell you about Kate Kelsall. She’s a gal who has had Parkinson’s for over ten years now. She’s also a blogger and a wife and whole lot more. She got PD in her early 40s and her enthusiasm for life amazes me. Her blog is called Shake, Rattle, and Roll–and that’s just what she does.

Here’s a short note for Linda:
A few million of us are thinking of you today. If thoughts are a form of love, and I happen to believe they are, then a whole lotta love and support is coming your way.
Yes, your news makes us a bit nostalgic, but in our hearts, you’ll forever be our song bird.
So sing a new song. Dance, love the people who are in your circle, and open wide and let them love you back.

I never thought this day would come–when I’d write about making peace with my mother. My mother was difficult, and that’s an understatement. It’s not that I’ve ever known anything different. When some people read my book, Mothering Mother, they ask how I could have forgiven her, much less taken care of her. The reason is simple: caregiving is more about you–your character,  your journey–than it is about them.

While my mother was demanding,  domineering, rather self-serving, somewhat violent (I grew up in the day when spanking, whipping, and  even slapping your child across the face (which she did more times than I can count) wasn’t all that unusual–mine was just a bit more extreme), but my mother was also funny, bigger than life, and she ironically adored my daddy and me.

I spent  my 20s pretty darn angry–about being adopted, about her  rages, and in general, just one big hot  mess. Eventually, I got tired of being angry. I got tired of carrying such a huge “life isn’t fair” grudge around all the time.

So, in essence, I simultaneously wore it and decided to let go.

Not because she  did or didn’t deserve it, but because I did.

And in full disclosure, there were many times (teen years especially) where I was not the ideal daughter and she had every right to be beyond frustrated/irritated and  at a complete loss as to what to do with me.

We continued to have  our tiffs and rifts. I still had to stand up to her–toe to toe–and she still managed to wield her emotional  knives and sometimes I didn’t see them  coming and  would once again buckle under the hurt. Still, this formidable woman gave me more good than ill. I honed my strength, my courage, and my faith by having it tested again and again. And in time, as I  married, birthed and  raised children, I became aware that  all mother-daughter relationships are fraught with a tangle of emotions, regrets, and misunderstandings. I  have  more compassion for my mother these days and I ask mercy from my own adult daughters. Yet I know  there will be so much I won’t understand and they won’t understand  until it’s time. Until then I will be their whetting stone and they  will sharpen their axes on me just as I, in turn, did to my mother.

I am finally at peace with my mother. Not in some Pollyanna way. I am at peace now because I am somehow able to open wide and embrace all of it–I can remember and absorb the pain and it no longer poisons me.

I remember the day  I opened Jack Canfield’s book, The Success Principles and read his first entry:

I am  100% responsible for my own life.

That day I finished growing up (not that  we are ever done growing).

The angst of a mentally ill birth mother, a alcoholic-addictive father, a cold grandmother saddled with grandchildren to raise, being  abused and  being adopted by the age of four to a mother wrestling with religion and force and hardened old and narrow  ways–all of it burned by some holy fire, no more than ashes.

I am 100% responsible for my own life.

Peace.

Only by loving what is–all that she was, that I was, all that we are and will  forever  be–am I now capable of holding us in that sacred and loose place. I can smile and say with  an open heart and wide arms,

“Oh, we’re  such a mess, aren’t we?”

We don’t tend to talk about our love lives and caregiving in the same conversation. Why? Does sex go out the “caregiving window?” Do you stop desiring your partner when you enter into the caregiving role? Many do. It’s not that we don’t still love each other. We may recommit our hearts  and lives even more when our loved one needs us–but needing and wanting are two different animals and you don’t necessarily have to stop being a sexual creature just because you’ve aged, have a disease, or find yourself caring for someone.

I recently watched this AMAZING TED video titled, “The Secret to Desire in a Long-Term Relationship.” presented by Ms. Peres bas traveled the world studying erotic intelligence. Ms. Perel talks about the dilemma modern couples face–marrying for love (as opposed to a mere societal contract) and living a very long time together–all while supposedly enjoying security as well as hot sex.

There is no caretaking in desire. Wanting is desire. Neediness is not attractive. Ms. Perel reminds us that anything that reminds us of parenting i.e. (taking care of someone) is a turn-off, as it should be. We need our parents. We want (or desire) our mates.

What’s a caregiver to do?

Nothing saps your desire as much as exhaustion and worry, sleep deprivation, a counter lined with pills, a hospital bed in the middle of the living room, care assistants traipsing in and our of our houses, or a long stint in rehab. We think that sex has to take the back seat when someone is sick, aging, or has entered into the dying process.

But it’s part of who we are. Sex is mystical. It’s a binding agent in our relationships. It’s a way to express not only joy and playfulness, but it’s also a healing force–physically and emotionally.

I faced this issue (sort of) while caring for my mother who was living with us (hubby, kids, and me). She needed 24/7 care for Parkinson’s, heart disease and dementia. She was demanding (to say the least), fearful, as well as in need of real hands-on care. Not exactly the ingredients needed to get in the  mood. I found myself compartmentalizing who I was at any given moment. I’d slip out of caregiving mode and into mothering mode when one of my children needed me to help them study for a big test, or to take photos of them before they went on a special date. I’d slip off that role and step into being my husband’s lover as I slid the bathroom door shut, turned on some sultry music and stepped into the shower for a few minutes of “alone time.” Twenty minutes later and I’m back in the kitchen, dressed, and cutting my mother’s pills up for the week.

I had to learn how to shut down one part of me and slip on another.

What made that challenging was stepping out of the lingering emotions–resentment (can’t I just have 30 minutes to myself?) guilt (I know she needs me, but my girls need me, too), worry (I’m so afraid they’re going to put her back in the hospital–and they’re going to push for exploratory surgery and not only will that not fix anything, but there goes my life for how many weeks!)

How do you still tap into your love life even while caregiving?

Here’s a few things I learned:

  • Stop trying to be everything to everybody. It’s impossible. There will be gaping holes I can’t ever fill.
  • Decide not to always be available. Shut the door. Go to my room. Shut the door. Lock it if I have to.
  • Time for me–first. I learned to not bolt out of the bedroom in the morning. If my family made it through the night (or even part of the night, in my mom’s case), then they could go 30 more minutes without me. Having time to shower, dress, journal or stretch before I hit the caregiving concrete really helped me separate them–from me.
  • Don’t get lazy. Kiss good morning or good bye. Say thank you. Make the effort to smile. Learn to be a good conversationalist. Sit next to each other on the couch instead your own recliners. Spritz on his favorite perfume–not because you’re  going somewhere–just because he likes it.
  • Create sexy moments–and a moment may be all there is. Duck into the pantry for a steamy kiss, grab his butt while he’s in the fridge, flirt by text, tousle his hair at the breakfast table. You may not have the time or energy to do any more than that–but “that” can be really good.
  • Slip in and out of roles–as I mentioned above, turn off–and on–who you are. Do this for yourself. Learn to turn OFF caregiving. Go back, just for a few moments, just to be their daughter, or wife.
  • Be playful. Desire is loose. It thrives on spontaneity. So if you feel yourself always clenching, always on alert, stop. Do some stretches. Visualize your favorite memories–of a perfect spot on a beach, of a time when you two felt the magic. Put on some music. Smile, even if you have to take it. Recognize when you’re being too serious for your own good–and figure out how to get back to some of that joy and ease.
  • Ask for what you need. Ask him to rub your shoulders. Ask if he’d go for a five minute walk with you. Ask if he’d hold you when you’re feeling sad or vulnerable. Use your words and believe that you deserve all good things.
  • Whether you have someone in your life right now or not–make the time and space to nurture your own sensuality.  Figure out what that means to you, but bottom line is  to make time for you, make space for just you, give yourself permission to give yourself pleasure (I’ll leave that up for interpretation) whether that’s sexual in nature or involves a few minutes alone with a Dove chocolate bar while listening to Andre Bochelli serenade you in the laundry room.

How does nurturing your love life make you a better caregiver?

It fills up the well of your soul.

It gets us in touch with our physical and soul-full selves.

It infuses us for energy, joy, and even relaxation.

It reminds us we are indeed, still alive.

I hope you’ll be brave enough to enter into this conversation–with yourself first, with your partner, and I’d love it if you’d leave a comment!

It’s time we started talking about what we long for…and a warm, fun, play-filled, healing, tender or rompous (yes, I made up that word) love life is just the beginning…

Have you ever noticed how in a store or a restaurant you’ll talk to someone who has a baby–or you’ll see an elder sitting alone and you’ll start a conversation? Our “bookends,” I like to call them, have a way of allowing others to open up and say, “Hi!” It’s a good thing, too. As fulfilling as those two times in life can be, they’re also lonely. It felt so good to see my babies wave and a stranger wave back–to see them smile. And it felt so good to see my mom’s face brighten when someone commented on her crazy blue petal hat.

Caregiving meant I spent a lot of time with my mother. A lot. A whole lot. And truth is, we needed each other, but we also needed other people in our lives. Sometimes we got fussy with each other just because there wasn’t anyone else around to break our monotony.

Caregivers find it difficult to maintain friendships. We’re not exactly stellar company. Most of us are sleep deprived and we probably need to complain for a good 15 minutes (just to get all the stress out of our systems) before we can calm down enough to have a casual and uplifting conversation that doesn’t include a diatribe about bowel movements.

Why have we lost our conversational skills? Myopic vision. We can’t see past our own situations. Because folks in pain–physical or emotional–can’t see or feel much past their own all consuming issues. Besides, who wants to talk about adult diapers, ER trips at 2am (for no other reason than for gas…), or the latest update on Medicare? We forget it’s a great big world out there and we’re not the only ones going through crap–and that good things are happening, too.

Caregivers either tend to be sleepy (we nod off at the red light), grumpy (we snap at the bag boy for squishing our potatoes, which who knew they could be squished), or we’re weepy (every commercial–luxury car commercials remind us of what we’re missing even though we’ve never thought about zipping through the streets of Rome Italy at 100 mph). 

Our worlds have grown small (unless you count all our new friends at the doctor’s office) and our waistlines have grown wide (can Oreos be considered a vegetable?) Although caregivers might not always be pleasant (talking about myself here) we just need someone who makes us smile, helps us to laugh, and don’t mind if we lean on their shoulder occasionally and ball our eyes out. We also need someone to tell us to STOP our whining, open our eyes and see that planet earth is still spinning and still a pretty snazzy place to be. You know what they say…location, location, location….

I hope you have at least one person who is brave enough to speak the truth into your life and someone who will be there for you–no matter what.

If you don’t have one, then consider reaching out to an online caregiver buddy.

You cn meet them on a caregiving site–Caring.com’s forums, AARP’s chat rooms, or the Alzheimer’s Association boards–all of them have literally hundreds of folks just like you–they’ll get your snarky humor and they’ll get it when you say all you feel like doing is crawling back in the bed. Sometimes a friend is someone who’s a lot like you.

I recently had the honor to peruse the web for the best caregiver stories out there, and I happen to know there are some amazing caregivers who blog, photograph, and share their art and their lives. They open up their curtains so you can peek in. You’ll find stories that echo your own. I hope you’ll check out their stories. http://www.caring.com/articles/best-caregiver-stories-web

Bottom line, the world’s not the big scary place we think it is. We’re all just people bungling around in our own lives. And we’re all a tad lonely.

So break out of your bubble today and give someone a compliment. Take the time to check on someone you haven’t heard from in a while. Play peek a boo with a toddler who’s in line in front of you. Hold the door for an elder–and give them a smile.

Be the first to reach out–and the world will reach back.

You just might make their day.

 

“Only the hand that erases can write the true thing.”

Meister Eckhart