Feeds:
Posts
Comments

Archive for the ‘parkinson’s’ Category

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.

Advertisements

Read Full Post »

It’s 2am and you’re in the ER. Your mother has fractured her pelvis. You get the diagnosis your husband has cancer. Your dad has wandered off and you can’t find him–nobody has to tell you he has Alzheimer’s–you already know. Any of these circumstances can throw you to the deep end of the caregiver freak-out pool. I know what it looks like and feels like. You feel numb and alert at the same time. You eyes get this wild look. A thousand thoughts and feelings bombard you and you can’t turn them off. Your life–as it was five minutes ago–is over.

I don’t think caregiver freak-out can be avoided. Bad things happen. Accidents, diseases, falls…life is a landmine. How we react is in large part biological. We go into a kind of shock. Adrenaline floods our systems. Our brains are on fire with everything from confusion to regret. The cocktail of panic, dread, worry, tenderness and loss  is part of our jouney.

The problem is, you can’t (or rather shouldn’t) stay in caregiver freak-out.

You’ll make yourself sick–and you won’t be any good to anyone.

Yet how do you break the cycle?

You’re stuck at the hospital or rehab for weeks on end. Your loved one may need tests or surgeries. You have to call everyone you know and give them “the news,” replaying all the details again and again. You face more changes. Perhaps it’s a wheelchair, or a care facility, or they need to move in with you. Family members come together to figure out what to do.

Your world has changed. You used to get up and go to work or run your errands. Now you make doctor appointments, set up physical therapy visits, get to know your pharmacist on a first-name basis. You’re buying bedpans and meal supplements. Your loved one is in pain or they’re confused and no matter what you do you can’t seem to get it all done, relieve the pain, or comfort the one you love.

You live in a perpetual state of sorrow and dread. Your spouse, your parent, your family member or dear friend is sick, really sick. They’re going to die. You can’t bring yourself to sit five seconds with that thought. You don’t know how to be with someone who is dying. You don’t know what it will be like. There’s so much you don’t know so you stay busy. Crazy busy. And although you never say it aloud something in you believes that if you do enough, care enough, try hard enough..you can prevent what’s to come.

So you take up residence in caregiver freak-out land.

You didn’t realize you changed your zip code, but you did.

Your world, your thoughts, your body and spirit barely resemble who you were. You’ve thrown everything and I mean everything you’ve got into caregiving.

But there’s a whisper behind you. You’re running scared.

I know this because I lived this. My mother had Parkinson’s and Alzheimer’s and heart disease and I was her only child. She needed me and I did everything I could to make her feel safe, to comfort her, to outrun death. I know that awful feeling and I’m not going to offer three tips or anything like that. I hope to share in the next few blogs that is is possible to slowly but not easily possible to move past this initial phase–and why it’s  a little like moving into a nuclear missile testing site–perhaps not the safest address in town.

Read Full Post »

All of us worry about aging. Perhaps we should worry less–and learn from a pro. So, who’s the oldest person who ever lived?

The oldest woman (that can be documented) is Jeanne Louise Calment. She lived to the age of 122.

Born in Arles, France, February 21, 1875, and left this earth on August 4, 1997. Now, that’s impressive–but what’ more impressive is her mindset, her ability to embrace challenges and change. If anything is the key to longevity–with quality–it’s embracing challenges and changes with a measure of wit and grace.

What attributes do you need to live a long, healthy, and meaningful life? Living past 100 isn’t just about longevity–it’s about quality. Being a caregiver, I got to see “old age” close up. My mom lived to the age of 92 and it was only the last two years that were extremely difficult. ( My mom had Parkinson’s, Alzheimer’s and heart disease). There isn’t always rhyme or reason why one person makes it well past 100 with a sharp mind and a spry body while another person seems to hit one health problem after another.

Many centenarians have eaten what they wanted, smoked, drank (usually in moderation)–while someone else who tries to follow all the rules finds a not so pleasant diagnosis. Life isn’t fair. That’s a mantra we must embrace–and not in a negative way–but by choosing to love what is kind of way, and knowing the only thing we can change is our attitude.  Life’s a crap shoot, so let’s play some craps.

Highlights of Jeanne’s Louise Calment’s Amazing Life:

  •  Born the year Tolstoy published Anna Karennina
  • Born one year after Alexander Graham Bell invented the telephone.
  • She met Vincent Van Gogh in Arles, her home town, when she was just 14. She wasn’t impressed.
  • In the end Calment was blind and almost deaf, but she kept her spunk and sharp wit to the end.
  • At age 121, she released her two CDs, one in French and another in English titled, Maitresse du Temps (Time’s Mistress). the CD features a rap and other songs. She wrote or contributed to five books.
  • Her husband died of a dessert tainted with spoiled cherries–she was a widow for more than half a century.
  • She outlived her only daughter who died of pneumonia at the age of 36. She raised her grandson who became a medical doctor and  lived him as well (he died in a car accident in 1963).
  • Calment took up fencing at the age of 80, and rode her bike until 100.
  • Calment enjoyed port wine and a diet rich in olive oil–and chocolate–two pounds a day.
  • At the age of 119 she finally agreed to give up sweets and smoking–because she could no longer see to light up.
  • Calment enjoyed a life of relative ease–from a bourgeois family, she always had enough money–not wealthy mind you, but enough.
  • She was active–and enjoyed tennis, bicycling, swimming, roller skating, piano and even opera. In her later years she sold some of her real estate and lived comfortably in a nursing home in Arles until her passing. She was affectionately known in France as “Jeanne D’Arles.”

Calment’s attitude and longevity s attributed to her decision not to worry: “She never did anything special to stay in good health,” said French researcher Jean-Marie Robine.  She once said “ If  you can’t do anything about it, don’t worry about it.”
Calment recommended laughter as a recipe for longevity and jokes that “God must have forgotten about me.” ( L’Oubliee de Dieu?) as her reason for her long life.

For skin care, she recommended olive oil and a dab of make-up.  “All my life I’ve put olive oil on my skin and then just a puff of powder.  I could never wear mascara, I cried too often when I laughed.”

Calment’s Quotes:

“I’ve waited 110 years to be famous, I count on taking advantage of it,” she quipped at her 120th birthday party.

Also on her 120th  birthday, when asked what kind of  future did she expect, she replied “A very short one.”

Getting used to growing media attention with every year that passes, she quips:  “I wait for death… and journalists.”

“When you’re 117, you see if you remember everything!”   She rebuked an interviewer once.

On her 120th birthday, a man in town said, “Until next year, perhaps.”

“I don’t see why not,” she replied. ” You don’t look so bad to me.”

Clement’s Best Quote:

“I’ve never had but one wrinkle, and I’m sitting on it.”

I don’t know about you, but aging like this doesn’t sound too bad. It sounds like a good life.

Enjoy life, learn to let go–even of those you love, crack a good joke, eat what you love, and don’t worry about the rest.

***

Mothering Mother is now available as an e-book! (click here to order for your Kindle)

Read Full Post »

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

 

Read Full Post »

Caregiving my mom carried many ironic gifts. One is that I witness how love goes on–after death. My parent’s marriage lasted for 52 years. They faced the Great Depression, World War II (Daddy served for four years–in France, at the Battle of the Bulge, and then stayed to help rebuild the country), a miscarriage, an inability to have natural children, a two career household when that was quite unusual, and later–one illness after another, including daddy’s final battle with heart disease. What I realize now, looking back on this vast relationship landscape, was that love goes on. As a daughter and caregiver, I am profoundly grateful to have witnessed this.

My mother was a widow for 18 years. She would have never wanted that. She had no desire to marry again. Daddy was the love of her life–and vice versa. I was adopted when they were 54 and 58 years old. Established. They argued (petty but quite verbal) all the time.Both of them retired by the time I was in second grade, so they spent a lot of time together and with me.  They only have maybe two tiffs that seemed rather big the whole time I knew them. They were as polar opposite as can be. He was quiet, a bit melancholy. Deep. Thoughtful. She was loud, vivacious, and her moods were shall we say…unpredictable. And yet, they worked it out.

More than that, they adored each other. They complimented each other constantly.  They respected each other, bragged about each other, doted on each other. And yet, they were completely normal. She talked too much and that drove Daddy nuts. She micro managed his entire life down to picking out his daily underwear. Daddy was slow. Wouldn’t do anything he didn’t want to do. Stoic. Refused to follow the doctor’s orders. That infuriated my pull-pushing, dot every i, OCD mother. He escaped each day down to his chateau–the garage he built with his own hands. That’s what marriage is like.

Daddy did all he could to look out for my mother. He left her a home, a generous savings, health and life insurance. More than that, (which all of that became less valuable over time–almost 20 years has a way of gobbling up money and goods) he left us all a legacy.

I’m grateful that my mother, who fought Parkinson’s and at the end, Alzheimer’s/dementia didn’t forget her husband–not until maybe the last year. We talked of him every day. We kept his pictures out. We shared stories. And as you can probably tell, I adored him, too. With all of my being.

And now, both my parents are gone. Time has taken them. That’s what time does. And yet, they remain. Their marriage endures. They are my example. I am profoundly blessed to have been adopted by such a union–and I say this in full light of my less than idyllic childhood (I did mention that my mother was unpredictable and for anyone who has read Mothering Mother, they’ll also note that she wasn’t exactly easy to care for either!)

Still, love is what endures. Spending the last years with my mother and caregiving for her daily needs gave me the opportunity to witness love in action. Their marriage carried over, like the scent of gardenia on a southern night. The sweetness remains.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Read Full Post »

Caregiving and romance doesn’t seem to go hand-in-hand, but in many ways, it’s the epitome of real love. To care for a spouse, to set aside other aspects of your life and even your marriage to care for an aging or ill parent or child, is about grown up love–the kind that gives, and at times, the kind that sacrifices. Keeping love alive isn’t always easy under the best of life’s busy circumstances, and caregivers even have added stress, but it’s so worth the challenge.

Love Do’s:

Number one goal: Survive. We call ourselves “Team O’Dell.” Some days we felt like a black-ops team whose goal was to get through the dangerous landmines of caregiving and raising teens without committing kamikaze. Wasn’t easy, but I liked the idea of the two of us on a covert mission. However you do it, stay united.

Do keep a bigger vision in focus: Your marriage, your health, your sanity, your humor, your passion–keep that visionary “finish line” ribbon in site. No matter what happens, how long or how hard caregiving gets, the goal is survive–and even thrive.

Do practice good manners. Kisses hello and goodbye, thank you for the hot tea, opening the door for your lady–treat each other like you would on your first date. Why? Because in honoring someone else, we honor ourselves and our relationship. It takes a bit of discipline at first and then it’s easy–and really helps to smooth things over on tough days.

Do compliment each other. Tell your loved one how brave they are. How compassionate they are. How funny they are. Caregivers (for the most part) don’t feel attractive, don’t feel perky or sexy, so remind them they are. Nothing is sexier than someone who knows how to love.  Compliments never get old–not when they’re genuine.

Do look for moments of connection. Forget going on a two-week vacation for now–don’t even torture yourself with the idea. You may not even be able to go on a two hour dinner date, much less a weekend getaway–so grab a kiss in the garage, dance to your favorite song in the kitchen, or better yet–start each day with a shower together! (that was the one place my mother respected my privacy–I think she was part-cat and was afraid to get wet!)

Do celebrate every chance you get. See some gorgeous wildflowers in bloom on the side of the road? Stop and grab a handful. Buy her a mini cupcake and stick a candle in it as a “you survived another week” celebration. Celebrating isnt about fancy gifts, it’s about taking notice.

Do say thank you often. Every day, in fact. Consider a gratitude board where everyone writes what they’re thankful for–a great kitchen or laundry room addition. Use a bit of irony: “I’m thankful I didn’t pull all my hair out today–or I’m thankful I didn’t rip that doctor’s nose off when he trated me so condescendingly.” Not all gratitude has to sound like a Hallmark card.

Do invest in your emotional and relationship bank account. The caregiving years may be a time for withdrawals more than deposits. That’s okay. Know that your relationship is strong enough to go on auto-pilot for awhile.

Do give mercy cards. Your spouse snapped at you for no reason? Don’t snap back–offer a mercy card instead. Sometimes we need to let something go, look over it, and realize they’re under so much stress that just need someone to cut them some slack.

Do stand up to your spouse when you need to. The other side of mercy is a showdown, and sometimes that’s just what’s needed. If you spouse is being an ass, pull him or her aside privately and tell them the strong truth. Sometimes it’s the cold-water thrown in your face that gets your attention.

Do use the ole’ good cop-bad cop routine if you have to. Let your spouse use you as an excuse if they need to. Sometimes we need to blame someone else–it’s okay–use every tactic you need to. In times of war the rules change. In times of caregiving, the rules change.

Do know and expect that the love and energy you give out will come back to you. Demand it back. Fully expect that your health and your relationship will rebound. We’re actually hardwired with tremendous reserves for time of great stress or need. That’s why we have such amazing brain and muscle reserve. When you need it, it’s there–but be prepared for the adrenaline dump that comes after it.

Do know how to pace yourself and take needed breaks. You can deplete those reserves–and then you have nothing left and your health can be in serious jeopardy. A six week hospital stint, a month of all-nighters–and before you know it, you are completely shot. Have you ever seen some daredevil on television do something so reckless that it’s just plain stupid? Don’t be a daredevil with your health (mental or physical) for anyone else. If you go past that, its dangerous ground. Accept that there’s is a limit to what you can do.

Do consider each other a source of strength. The arms of you spouse or partner should be the safest place on earth. Create a haven for each other.

Do know that caregiving will end–and yes, eventually it will circle back and begin again. So when caregiving comes to an end, grive, reocver and then…live, celebrate, play, work–fill your life in a million meaningful ways. It takes some time to get back to feeling connected with the rest of humanity, but it will come. We’re meant to be fully engaged on this big blue ball–so when you can, while you can, go make memories, do some good out there, learn, explore, give back, kick up your heels and make some noise!

Keeping love alive is crucial but it isn’t going to be easy.

Whether it’s Valentine’s Day or any ole day, you’ve got to have some fight and some passion in your relationship. Being a caregiver isn’t about squelching all the other parts of you–it’s about weaving them in anytime and anyway you can. Be willing to invest and preserve your relationships and be determined that caregiving won’t take you down for the count. Caregiving is yet another thing you can look back on and realize that ironically it made you strong and it’s a part of who the two of you are.

Life is precious and caregiving seasons come and go. When it’s time to play, to travel, to really get out there–do it with all you’ve got!

In the words of my daddy, “Be good and take care of each other.”

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

Read Full Post »

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

Read Full Post »

Older Posts »