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Posts Tagged ‘caregiver’

Seth Rogen spoke to the Senate committee on behalf of the over seven million Americans who suffer with Alzheimer’s–five times as many people who suffer from AIDS in America–and yet all but two senators left. Why? Maybe they stepped out because Seth is perceived as a celebrity, but he wasn’t there for that reason. He spoke out for Alzheimer’s because this disease has hit his  family–his mother-in-law.
Maybe the problem is that Alzheimer’s isn’t sexy. It’s scary to most people. It turns our loved ones into strangers. It’s unpredictable. Even former President Regan was hidden away. We didn’t want  to see him “like that,” all undignified.

I too, have seen Alzheimer’s up close and intensely personal. It scared me, too, I won’t deny. But then I just got used to it. Not that it got any easier–the outbursts, the vacant eyes, the chaos and destruction that can ensue, the absolutely frustrating issues with the medical community and their lack of understanding what families are facing, the lack of support that leaves caregivers so often alone physically and financially as they try to do more than is humanly possible, the deep ache of losing a loved one drop by drop and not being able to comfort them because this disease won’t let you in…I know it well. My adoptive mother, who had Alzheimer’s and Parkinson’s, spent her last almost two years in our home and I held her as she left this  earth.

So Seth,thank you.

Thank you for your crass humor that gives us permission to laugh at ourselves.

Thank you for daring to call the senators out and ask why they left, why this didn’t seem important enough to stick around for–even if they didn’t agree with the message or the messenger it would seem that there shouldn’t be Senate hearings if nobody is going to listen.

Thank you, Seth. I know you’re just an actor, that you get paid to entertain, but for one day you hoped to use your celebrity-dom to talk about  something that a wholelotta us are facing in our families, with our mothers, mother-in-laws, grandparents, spouses and partners. I say we get used to messy. We educate others by sharing the nitty gritty. We speak out and speak out some more. We help each other through this.

Maybe you did more good because they did not listen–that it made the news in a big way–so now more people are listening.

You done good, Seth Rogen. You done good.

http://abcnews.go.com/Entertainment/video/seth-rogans-impassioned-funny-plea-alzheimers-awareness-22690205

 

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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.

 

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YES!

Sleep and laughter are perhaps the most healing gifts the good Lord gave us–and it’s the first to go when caregiver stress mounts an assault on your life. You have to fight to protect these two gifts. You have to buy a lock for your bedroom door, take out the TV, turn off your cell phone and not take it into the bedroom with you, refuse to fall for the drama and schemes that your loved ones pull to get you out of bed. It’s not going to be easy….they’re tricksy!

My mother treated the night like we were at the Indy 500. The later it got, the more riled up she got! She’d turn on the lights, bang the cabinet doors, call my name and knock on the door. I had to show her that I wasn’t going to cater to her 24/7. I wish I could tell you that this worked. My mom had Alzheimer’s and sundowners and over time, I had no choice but to get up and deal with the chaos. I had to practically strip her room bare (she seemed to gain super-human strength in the middle of the night and could overturn her nightstand, rip all of her clothes off of hangers and empty her drawers into a pile in the middle of the floor).

If you’re reading this and your loved one isn’t doing these things (yet) this probably scares you. All I can say is that Alzheimer’s takes you and your loved one to some pretty bizarre places. You’ll experience things you never even thought of! And yes, at times, it’s scary.

But at some point you stop being scared. They’re still your mama, your daddy. And caregiving makes you brave. It toughens you up. You face your monsters and you realize that you either stand up and take control or realize you’ll be bullied from here on out. So you deal. You get strong. You love and you hold your temper even when provoked and even when you don’t get any kindness back. You make tough decisions. You do what’s best.

And you laugh. You laugh so you won’t cry. You laugh and cry all in the same breath. You realize that life is precious, and sweetness still abounds, and that the crazy stuff might just be the good stuff. You laugh because none of it makes sense. You laugh so you can let go, so you can feel, so you can hope again.

So right now, look up a joke, or call the funniest person you know and tell them you need cheering up. Vent, share your crazy-awful, silly, you-would-never-believe-what-mama/daddy/husband/partner just said or did….You laugh because it’s the only antidote to grief or sorrow there is.

Laughter and sleep–ain’t nothin’ better…

Take both–or either–any way and any time you can get them.

~Carol O’Dell

Author, Mothering Mother, available on Amazon 

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We sat in the Ronald McDonald family room at Shands Children’s Hospital, sequestered for the day, waiting for the pediatric cardiologist to operate on my middle daughter’s 8 day old baby girl. All of my family gathered. We ached with worry, skittered around the edges of dread, squeezed hands and whispered prayers. We also laughed. We have that ability–to tease, to banter, to tell a familiar story, to find sweetness and humor wherever we are. All of us, together, getting through this wonderful and awful day, my daughters, son in-law and husband confined in such a small space, with so much at stake, and yet there we were, healing our own hearts.

I’ve been here before, with both parents, through back surgery, abdominal surgery, heart surgery, through kidney infections, Alzheimer’s and Parkinson’s. I’ve walked this too-familiar road, but never like this.

We drank nasty coffee, the TV on although none of us watched it, flipped through waiting room magazines, covered in blankets, our legs thrown over one another.  The hours dug in long and hard. We’d go through swells of fears and eddies of faith. Some of us took walks, others tried to nap. We played on iPads, shared apps, got fast-food, the only choice we had.

We checked the time, then checked it again. In the lull of the afternoon, our daughter gets a call and steps into the hall. Moments later she flings open the door, her eyes and face already swollen from days of sorrow now blotched and red with fresh tears.

I sprung, arms open…oh god…

The surgery was over. It went well. Our tiny baby’s heart is repaired.

Relief poured up and out of us all. We became a geyser of tears and laughter, cheers and hugs.

If it weren’t for the break that humor gave us, the ability to siphon off some of the dread, the sharing of strength and solace, I don’t know how any of us would have made it through that day. For a caregiver, or family or friend of a caregiver, perhaps this is your greatest gift to give.

How does humor heal? New research has shown that it’s a natural pain reliever and does wonders for our immune system. Laughter is nature’s re-calibrator. Most of all, it’s contagious. And don’t worry about it being inappropriate to smile or laugh when life is at its worst. It’s a testament to the human spirit, to hold the “scary stuff” in one hand, and to balance it with joy, with sweetness, with laughter, in the other.

Even in the darkest of hours, laugh, tease, play and tell a story.

Humor heals. It makes the unbearable bearable. 

 

~Carol O’Dell

Author of Mothering Mother, available at Amazon and on Kindle

Resources:

http://psychcentral.com/blog/archives/2009/02/17/9-ways-that-humor-heals/

http://women.webmd.com/guide/give-your-body-boost-with-laughter

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“Where was I? A caregiver friend of mine asks, standing in the middle of her life as if she has walked back into a room and forgot what she was doing in the first place. Life after (or between) caregiving can make you feel odd in your own skin. You’re not who you were, you don’t know what’s to come, what you’re good at now, or what interests you anymore.

Long term caregiving can feel as if you’ve held your breath so long you don’t know how to inhale and exhale like all the other folks on the planet.

My friend is coming up on the first anniversary of her dad’s passing. Fifteen years spent as a caregiver (primarily) and her hair is now strikingly white, she has a new husband, and for better or worse she’ll tell you she’s just not the same gal she was when she agreed to move in and care for her mom, then dad all those years ago.

Perhaps a better question is, “Where am I?”

Where was I doesn’t particularly matter. You’re however many years older. Your experiences, beliefs, and even issues have changed. And that’s okay. It has to be. It’s the nature of living–things change and so do we.

It’s not that things changed, most of us get that, it’s that aspects of our selves, our lives, were in stasis. We feel like we’ve been in cryogenic sleep and have no idea who won that last 20 World Series. Life has gone on without you. You have no idea what movies are in theatres, and whatever happened to DVD’s?

You may be thinking about going back to work, but what are you qualified to do–other than bring juice, fluff pillows, and argue with insurance companies?

Getting traction, momentum may take some time–and while you’re figuring this all out–grief sweeps in like giant waves crashing on top of you, buckling your knees, you come up sputtering with a mouthful of grit and a belly full of hurt.

Letting go of what was will eventually come. Let it. No, you’re not 35 any more, but 55 isn’t so bad. There are a few perks that come with aging, with living, with loving for so long. Letting go takes time. We don’t open our grip without some resistance.

In Finding Your Own North Star by life coach Martha Beck, she talks about being in quadrant one–when all we know dies, when our lives are reduced to rubble and we stand in the ruins, ashy, beat up, stunned, and the mantra is:

I don’t know what’s happening, and that’s okay.

It’s okay to not know what comes next.

It’s okay to have a decent hour when you’re not consumed with grief or anxiety followed by four crappy, baseball in the back of the knees–ones.

It’s okay not to have a plan.

It’s okay to bump into walls.

It’s okay to cry–not cry, scream–not scream.

That’s where you are.

And that’s okay.

My only suggestion is this:

Do what soothes you, follow any inkling of a curiosity, buy, borrow, visit anything or anyone that stirs something in you. These are the seeds of desire.

And our desires, however small or trivial doesn’t matter, are the thread thin roots of our new selves.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Being a full-time caregiver for several years and going the “last mile”has taught me a thing or two. I allowed (not just physically, but emotionally and spiritually) my mom to pass in our home and that has changed me. At the time, when I was in the thick of caregiving 24/7 and having to get up and play “prison guard” to my mom who had Parkinson’s (thank God because it slowed her down) and Alzheimer’s (which revved her up) and heart disease (just to throw another kink in the game plan), I spent most nights hitting my bed only occasionally as if it were a trampoline. In those grueling, full of worry, can’t make it better no matter what I do, nights and days I wondered at times if I would survive. I did, and I’m profoundly grateful for this life-changing, push me to the bitter edge experience. This gal learned a thing or two.

  • I learned not to be afraid of disease. Parkinson’s and Alzheimer’s I’ve seen what they can dish out, and it’s not pretty. They’re bad, don’t get me wrong, but I know the terrain and I find we’re most afraid of the unknown. I hope to figure out how to deal with whatever grenades life throws me.
  • I want to grab life with gusto. No guarantees in this world. So spend your money, take the trips, laugh with friends. Love big and hard and take risks–the good kind. Do it now. Arbor day, Chinese New Year’s–life’s for celebrating in big and little ways.
  • Stand up for myself–and for those I love. Caregiving comes with a zilliion big and little decisions. It’s easy to be bullied by the medical community, by other family members, by the “shoulds” in your head. I learned to stand up and stand behind my own decisions. It’s easier to blame others, and it takes a big girl (or a big guy) to have the guts to stick to my own convictions.
  • Love what is.Pain comes from the fight to make things a certain way, when we can’t let go of what was and walk across the bridge to what is. I thought my mom was back in my life in such a big way so we could “fix’ our relationship–work through our hurts and misplaced expectations. Wrong. I learned to love her, to love me, to love us–as is.
  • Laugh–or scream–but do something to release those runaway rollercoaster emotions. It’s time to stop holding it all in. Sorrow, guilt, frustration, resentment–it’s all there for a reason. They’re clues to help us know what’s going on in our heads and our hearts. But they’re toxic if they’re stuffed down and not allowed to breathe.
  • Do something I’m proud of. It’s time to leave the world a better place than I found it. I want to be known for something. For making a difference. I want some small sliver of the world changed for the better–because of me. I’ll let you know what sliver grabs my heartstrings next.
  • To stop caring what others think. Get a nose piercing, cut my hair down to the nubs, paint my front door purple and my mailbox lime green, dance under the stars, speak up and speak out when I see an injustice–that’s how I want to live now. That’s how I want to be remembered. Conformity sucks. In the words of Nelson Mandela (I believe he quoted it from Marianne Williamson), “Why are you trying to fit in–when you born to stand out?”
  • Nature heals. Nothing brought me more comfort than the sparkle of light on water, a bird’s wings whirring overhead, a breeze lifting my hair and reminding me to stop for a moment and take it all in. When sorrow slams into my chest I hope to remember to fall into the earth and ask it to take from me what I cannot bear alone.
  • To tell our stories. I wrote every day I cared for my mom. I wrote to stay alive. I wrote to figure out life. I wrote to remember our journey. Those journals became my book, Mothering Mother, but I wasn’t writing to get a book deal. I was writing to capture moments, to pick them up like a prism and look at each facet.
  • When death comes, I hope to dance my way to the next realm, not fight it. I hope I’ll have a bit of a heads up and let go of this world with a dash of grace. I hope I’ll take Chief  Sitting Bull’s words and shout to the universe, “It’s a good day to die!”

That’s what I’ve learned. Oh, I can still be shallow, petty, and mean-spirited at times. I still lose my way–but not for long. Caregiving has changed me. For the better.

~Carol O’Dell

Author of Mothering Mother, available on Kindle

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Today, my mother would have been 100 years old. I’m celebrating. She left this earth eight years ago, but she hasn’t left me. I spent the last three years of her life being her full-time caregiver and now, I’m back to being her full-time daughter. I feel the length and depth of our relationship. I see it as a whole or I can zoom in at any facet–when I was four and she adopted me, when I was fourteen with a splash of zits across my forehead, when I was 30 and a mother of three. Mother was there–for every stage. She still is.

I decided to take a quick glance at the year mother was born to see what it was like back then.

I decided to compare 1911 to 2011. Here are a few stats.

  • First use of aircraft as offensive weapon occurs in Turkish-Italian War. Italy defeats Turks and annexes Libya
  • Chinese Republic proclaimed after revolution overthrows Manchu dynasty. Sun Yat-sen named president
  •  Mexican Revolution: Porfirio Diaz, president since 1877, replaced by Francisco Madero
  • Roald Amundsen becomes first man to reach South Pole
  • U.S. explorer Hiram Bingham discovers Incan city of Machu Picchu.
  • Marie Curie (France) receives the Nobel Prize for discovery of elements radium and polonium
  • Chevrolet was founded in France
  • Ronald Reagan and Lucille Ball were born in 1911
  • First class stamp: .02 cents
  • Child labor at its height in U.S.

I notice the beginning of the car-craze we  grapple with still, today, Only now we’re focused on oil and how to fuel our four-wheeled allies. How much it costs, who has it, who needs it. It’s a pawn. It influences governments, commerce, and is a huge player in war. I also noticed Libya in the news–way back then–and again, in 2011.

Other similarities: more amazing inventions and discoveries include:

  • A 9.0 earthquake rocks Japan followed by a nuclear reactor scare of radiation contamination hundreds of miles in diameter.
  • Egyptian citizens take to the streets demanding and later receiving governmental changes.
  • Lybia breaks out in civil unrest as do other Middle East countries.
  • Gas prices continue to soar after last year’s major oil catastrophe in the Gulf of the U.S and due to escalating problems in the Middle East and a growing demand for the product.
  • Unmanned aircraft by DARPA is capable of staying in the air for up to five years
  • Virgin birth of a shark–second occurence we’re aware of (not kidding, folks, here’s the link)
  • Travolution system (by Audi) that allows its cars to exchange information with traffic lights
  • Gene that leads to longer shelf-life in fruits and veggies (Why include this? Think globalization and how we keep tampering with our food)
  • Omniderm–a substitute for human skin has been invented (and patented) by Israeli researchers, also artificial  corneas created by  U.S. doctors that could potentially restore sight to the blind
  • CERN successfully completes tests on the world’s first particle collider ( a potential form of energy)
  • Child labor is outlawed in major countries, but human trafficking (including children) remains a serious concern
  • Stamps now cost 44 cents

It’s obvious. The world has changed. The world is changing. And yet, I notice how certain concerns circle back around.

In some ways, I’m sad that mother’s not here to blow out her own 100 candles. But realistically, no. I’m relieved she’s passed on and is a part of this great universe.

Why? At 92 my mother has Parkinson’s, Alzheimer’s and heart disease. The last eight years wouldn’t have been pretty. Or satisfying. As a caregiver, I would have been way beyond burnout. Financially, her money would have been way gone, and money equals care in our country. I have no idea how I would have met her physical needs, much less her emotional needs. I don’t think, knowing where she was headed, that she would have been much more than incoherent and bedridden. Sad to say. Heartbreaking, actually.

Now, I do know of centenarians who spent their big century b’day by skydiving. That’s simply amazing.

But I’ve made peace with the realities of caregiving. That wouldn’t have been my mother’s outcome. She left this world with only the last year or two being rather rough. Not bad, to live 92 years and only the last two being less than desirable. Still, we enjoyed some good times those last few moments of her life. We played the piano, held hands, I let her eat anything she wanted–mostly Klondike bars. We looked at old photographs. I brushed her hair. She left this world on a gentle June evening with a breeze lifting a lace curtain overhead and me, by her side.

Happy Birthday, Mama.

What have you been up to these past eight years? Riding a comet? Are you sitting on a lawn chair enjoying some distant shore? Walking hand-in-hand with the love of your life?

What’s it like–over there? Is there an –over there?

Wherever you are, know that you are here as well–with me.

You used to relish telling me what to do. And now, I listen.

All my love, your daughter–

Carol

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

 

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Many people think that caregiving and womanhood go hand-in-hand. We’re nurterers by nature, we’re led to believe. Probably because they don’t want to do it (whoever “they” are). You’re good at it–so you should do it. We’re also good at cleaning the bathroom–not because we have a knack for it–it’s mostly because nobody in the house seems to even notice (I’m generalizing).

Caregiving can seem to run counter-intuitive to staying a woman.  Maintaining a vibrant, healthy, dynamic, enticing, savvy and nurturing selfhood can literally be sucked out of you by never-ending days, with the medical and insurance world, worry, regret, guilt, grief–who can be “womanly” with all that?

The truth is that what’s behind going on behind most front doors is that we know caring for our loved ones–whether babies or elders–is an important job–and most of the time, only one person in the family has the strength, autonomy, and chutzpah to do it.  We’re lonely and scared, brave and exhausted. We fear we don’t know what we’re doing. We fear we’ll be found out.

We try to be patient and kind but oftentimes, we fall short. We feel like we’re trying to outrun disease and death–and impossible task. We feel helpless to stop pain and depression. We love what we do but we worry about our own health and relationships–and we feel as if we’re giving huge chunks of our own life away–and in some ways we do it willingly, but we grieve all we’ve lost. We’d cry or even give up, but we don’t have the time–and something deep inside us  urges us to get up and go on.

Let me clarify this: there are many ways to be a woman. We don’t all need to be pin-up dolls. We’re far to rich and textured, complex and fascinating to be shoved in one tiny box. We can be cowgirls, butchers, dentists, outriggers, poets and prophets. Short hair, no hair, long hair, big boobs, no boobs, there’s no one way to be–but all these ways of being can be in jeopardy if you (or others) ask too much of you and you never fill your reservoirs.

But how? Your snarky self asks.

I know. My caregiving years were largely make-upless (not that you have to) pudgy due to horrible eating at 2 am (me and a bag of Oreos met for regular intimate discussions on the stresses and strains of caring for a mother with Alzheimer’s and Parkinson’s who had no respect for the words, “It’s after midnight for (#*%& sake!!!)

And worse, I was ugly–to myself–ugly thoughts, self-deprecating eat ca-cah and die, your life is over, your friends are gone, you’ll never go on vacation again, your kids will never want to take care of you, not after this, sex? are you kidding? can we say hello 200 pounds? That kind of looping inner-monologue.

I often wonder, if I could gather all my thoughts about my weight, my body, my hair, my boobs, my s0-and so doesn’t like me, am I pretty, am I sexy, too sexy, not enough, way to much–and I took all those seconds and used that brain power and time to say, learn a language, get a degree, or…run a small country…what could I accomplish?

So I’m not going to preach to you about treadmills. I’m going to tell you how I got through, and I do mean got through. “I will find you. No matter how far or how long, stay alive and I will find you!” I could hear my inner Daniel Day Lewis from Last of the Mohicans yell to me from the cascading waterfall.

So how did I get through?

I journaled all the crap going on in my head–allowed myself to vent all the really ugly scary nasty truthful tearful and sometimes hopeful, crazy and funny things I was thinking and experiencing.

I walked outside and cried a lot. Nature had a way of soothig my soul. A red cardinal on a branch, a sunset so red and so orange that I forgot my pain. The wind whipping in and around the trees turning the whole world into a dance.

I screamed in the car and in the shower. Yes, I too am surprised the neighbors didn’t call the cops. I hoped someone would call DFACs (department of children and family services) to come to my home and SOMEONE, ANYONE away. Do they have foster homes for fussy moms and rolling eyed teens? How about for grumpy caregiver?

I gave up trying to keep a tidy house. Between a hospital bed, portable potty, bedpan, cane, walker, mother who liked to go “shopping” or “trashing” in the middle of the night (she would have fit right in at a frat party), teenagers, dogs, cats, home health aides traipsing in at all hours of the day, I just gave up. Welcome to clutter-ville.

I did decide that my room was off limits. Our bedroom was the only room I refused for junk to pile up in. I bought a gorgeous bedspread–that kind that can thrown in place and look decent, painted the wall behind my bed a sumptous eggplant and bought a nice strong lock for my door. Best thing I ever did–that and the coffee maker I put in my bathroom so I could have my coffee before I hit the world full-tilt.

I watched the Food Channel and HGTV. I read about a half a poem a day. All the reading I could fit in–but I wanted it to make my soul howl for beauty. I opened art books so when I walked by I could Van Gogh’s Sunflowers.

I signed up for college. CRAZY, I hear you say. Yeah, but one night a week I left my mother in the care of my husband and two kids (God bless ’em) and I attended class. It was the most amazing experience of my life. I have no idea how I pulled it off, how I studied, but I did.

I drank good coffee. Elixar of the Gods. That’s all I’m saying.

I decided that I was probably going to have to deal with the weight thing after caregiving. And I did.

I allowed my loved ones to hug me–and help. That was probably toughest of all. Me, super-amazing, I can do it all–accepting assistance. Admitting I could in no way do it all. Not even do it half. More like do it crappy. Multigenerational households, sandwich generation folks are ironically blessed. Triple the work, but lighter the load. My kids learned kindness, patience, and reaching out beyond themselves. My marriage grew stronger. Add caregiving to the list of things we survived.

I got to where I would talk back to my mother. That’s the great thing about Alzheimer’s–she wouldn’t remember it in five minutes, but I sure felt a ton better! Not vile stuff I’d have to ask forgiveness for on her deathbed (that’s okay, too) but the honest truths/stand up for myself/I’m your adult daughter doing the best I can so back off kind of stuff. The stuff I should have been doing all along.

I allowed each day to be what it was. Some good. Some awful. Kind of like a rip-tide. Fighting against it useless. Just don’t drown. Let it take you–out–far out. Then, when it releases you, swim like hell.

Somehow, Daniel Day Lewis met me on the other side (recurring fantasy, I admit). My mom passed–but she was 92. Good long life–career, marriage, child, grandchildren–the kind of life we all hope to have. Overall, she didn’t get too sick or too out there until the last three, maybe four years.

She taught me how to live, lots of what not to do, but lots of what to do. I made peace with my biggest adversary. Not her, myself. She just led the way.

And my womanhood–it survived. Maybe those caregiving years weren’t my sexiest years–but sexy isn’t always the goal, now, is it?

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

In spite of everything, yes, let’s !

                               ~Vincent Van Gogh

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One of the most challenging and heart wrenching parts of caregiving was that I felt I was losing little parts of me every day–my intellect, my creativity, my humor, my friendships…the list went on.

It wasn’t necessarily true, but the sheer amount of time it takes to care for an elder or someone with a chronic illness or disability is pure mathematics–and then there are the emotional hurdles–the zombie-like state that comes with lack of sleep, the grief of losing someone you love right before your eyes, the longing for the life you had–your career, your connections–some of it is pretty darn real and not in your head. And yet boundaries create energy.

Boundaries create energy?

View your life as the Colorado River–tumbling on its merry way–and then someone gets a grand idea. Build the Hoover Dam (aka caregiving). Major roadblock.

You can consider your free and frolicking river/life has come to a screeching halt–or you can see all that pent-up energy as power. Electric. Energy.

Yes, a major part of you is held back. Yes, there’s lots you can’t do.

If you think your life is over, well, it is. Thoughts create our reality.

But…if you find a channel, some way however imperceptibly small to tap into the essence of you–what you love–to learn, to write, to garden, to connect, to read, to create art and craft–then you have a way to live inspite of all that’s going on around you.

This is how I survived and thrived in my caregiving years.

I was fiercely determined to seek out what I love–to invest in me in some small way every day.

For me, that means art, nature, and faith. Those are my tenants.

Art, for me, was/is everything from:

  • painting (sporadically)
  • reading the Letters of Vincent Van Gogh
  • reading poetry, snippets of the Psalms, Song of Solomon, and Job (love when God talks back to Job!)
  • the books and art materials I’ve collected over the years–and never fully explored
  • heading down to the river to cry, curse, scream, and pray (my prayers were mostly tears and moans)
  • walking around my own yard/weeding/exploring
  • journaling–every day in small chunks
  • watching the Food Channel, HGTV, History Channel and Discover–things that fed my need to learn
  • friends to call/vent/invest in their lives
  • surrounding myself with what I love–fresh flowers, good coffee, candles, magazines

I was so hungry for life, color, meaning, connection.

Even when I could barely dress I searched out the things that made my soul, my Geiger counter, go off the charts. Thank God (and I do mean that) for books, for paint, for the Internet, for television, for the nature that surrounded me. You don’t have to go far to find beauty and passion. Nothing is more breathtaking and comforting than a red cardinal, the morning rays as it streams through your kitchen window, or the purr of a contented kitty.

Her are a couple of photos of some paintings and sculpture I did during my caregiving years. I’m still so amazed I could even keep my eyelids open–shows you that your heart’s desire is (at times) stronger than exhaustion and grief.

Six months after my mother died I started editing my journal entries–it became Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir.

At the same time I began a short story about a woman who quits her life (call it my personal fantasy!) and finds herself in the South of France painting with the apparition of Vincent Van Gogh.

Seven years later, it’s novel=length and ready for publication–White Iris. The seed of this story began in my dammed-up life–caring for my mom, reading Vincent’s letters, painting sunflowers and irises on my kitchen cabinets.

My hope is that you will find your way, dear caregiver. Tap into what you love. Surround yourself with it.

Don’t give up. Give in–to what you love.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

***The artwork was created during the time I cared for my mom.

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“I quit!” That’s what you’d like to say some caregiving days.

You feel like crap. You’ve gained a ton of weight. Your life consists of round the clock care–oftentimes for someone who doesn’t seem to appreciate it, and the only way out of this is…death. Yours or your loved ones–not great choices. You don’t know whether you feel like screaming or crying, but running away is definitely topping the list.

You’ve checked into other forms of caregiving–hiring more home health care, nursing home care–both expensive options.  The economy isn’t exactly helping these days.

It’s not as if you can just stand up and say, “I don’t want to do this anymore.”

Or can you?

Isn’t everything in you is screaming that very sentiment?

Not that you don’t love them. Not that you don’t want them to be treated with the utmost care and dignity, it’ just that it’s never ending. There’s never enough of you.

How to Caregive When You Want to Give Up:

  • Embrace your inner Eyore. Sometimes it helps to be grumpy–to get it out of your system. To just let all that negativity out–give yourself permisssion to be a real curmudgeon–especially if you’re always  the “nice,” the “up” one. Sometimes we make caregiving look too easy. It’s time to tell it like it is!
  • Change one thing. Most caregivers do more than they need to. They don’t say no, not even to the trivial things. It’s time to change that. What’s one thing that drives you nuts? Stop doing it. I got so tired of rechecks. Every doctor wanted to see mother–who had Parkinson’s and could barely walk–and Alzheimer’s back in six weeks. Forget it. I stopped the rechecks. We went only when she needed new medication or had a new problem. Having power in this one area felt so good!
  • So quit–for five minutes, or five hours. If you’re being treated ugly or you’ve just had it, say it“I QUIT!” Then walk out of the room. Walk out the front door. Get your keys and purse and sit in your car. You may not have to or need to go any further than that but I guarantee you, you’ll feel amazing!
  • Pretend you’re free. Take it one step further, what would you do if you weren’t caregiving today? Go to the zoo? Zip over to get your hair done? Take a nap? Can you imagine–down to the smell of ammonia and nail polish? Stay in that zone–where you truly believe you’re free–for the next five minutes or five hours–or whatever time you can afford yourself. You quit, remember? So act like it. Give your brain cells a rest.

Why go to all this trouble of pretending? Isn’t that for kids?

Neurologists are finding that we can trick our bodies–by visualization–and if you’re a great little actor/actress your body actually thinks you did that amazing thing–skiied, won an Emmy, or…quit~! It gives your muscles and your mind the break it’s longong for. Don’t be surprised if you kind of miss caregiving–it’s addictive. But you may feel this huge sense of relief, even if it’s only temporary.

Why be so bold? Because you should be caregiving because you want to. Yes, because you’re needed, but also because you love someone and you genuinely want to make their life better.

When you quit it’s like recalibrating something inside you.

When you walk back through that door–do it as a choice–with your heart leading the way.

This won’t solve all your issues. It won’t miraculously give you 20 hours sleep or magically make Alzheimer’s disappear, but it will relieve a little bit of angst.

It  will remind you that each day you must choose to love, to give, to be there for yourself and those you love.

When we feel stuck we fall into resentment –or worse, apathy.

So when you need to, quit, give up, and start anew.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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