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Archive for the ‘family caregiving’ Category

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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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

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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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Caregiving and Multi-Tasking: Are You Trying To Do Too Much?

If you’re counting medications, talking on the phone to Medicare, cooking dinner, letting out the cat, answering your mother’s incessant questions—and zipping over to the computer to order your husband’s birthday cake—you’re a multitasking caregiving fool.  Not that you’re a fool, it’s just that I figured out it was foolish for me to think I could pull all that off at the same time—error free.

Why doesn’t multitasking work?  

It boils down to our brain structure. Science, April 16, 2010 edition reports a study in brain imaging  when subjects are given many tasks to complete simultaneously. The study asked subjects to “juggle streams of letters, concurrently performing two pairing tasks” only to find that our brains simply can’t do its best job when given too many jobs.

When we give our brains one task, one part of our two-part hemispheres take on the job—whichever the chore is best suited for. When we give our brains a second job, it’s allocated to the other half. We might be able to manage that, but add a third, and there’s no more hemispheres. We volley back and forth, jump from thought to thought, and eventually one of the balls gets dropped.

Sadly, and particularly in the medical field, “dropping the ball” can lead to dangerous outcomes—wrong dosages, a surgery on the wrong limb, a botched procedure. Even as a family caregiver, the wrong medications or incorrect dosage amounts are a strong possibility.

How do you care-give without multi-tasking?

I won’t lie. It’s not easy.

I was a sandwich generation, multi-generational, multi-tasking mom. Three kids, two dogs, a cat, a traveling husband, and a mom with heart disease, Parkinson’s and Alzheimer’s. My days and nights blurred like a carosel on crack. I was dealing with teenage drivers, dating, my mom’s list of medications, her in and out hospital stays, a house to manage, my own feelings of womanhood, marriage, and laying down a career in order to be “mom central.” And yes, I dropped the ball. I let exhaustion and frustration lead me to some poor decisions. There were days I would sold a kid to the gypsies, my mom to the circus–and I had big plans of heading south and taking up life as a salty, toothless waitress.

I had my scares–waking up to find my kid had blown curfew. Waking up to find my mom heading out the back door (thank goodness for alarms!), calling poison control because my mom had tried to drink liquid deodorant (drink milk is what the told me–ever try to force an adult to drink anything?) Those wake-up calls scared the crap out of me. I was blowing it–and the consequences were only going to ramp up if I didn’t figure out how to care for those i loved.

The world comes at caregivers pretty hard and fast.

All we can do is prioritize. Let things wait. Decide what’s most important and shut the rest out, especially when it comes to medications, bathing, driving, and other safety issues. So ignore the phone. Answer that email later. Turn off the television. As the world around you begins to calm, you’ll find you really enjoy paying attention to just one thing at a time.

And perhaps there’s even a more important reason. When we’re multitasking we’re not really present. We may be performing a complicated list of chores, but we’re not the daughter, son, or spouse we mean—and need—to be.

~Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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There came a time when I knew my mother was dying. It wasn’t necessarily a physical symptom, it was a gut feeling. I was scared–even frantic. How do I do this? If you’re a caregiver it’s likely that you will eventually face the last turn in road. Your loved one will entering the dying process and as death draws near you may call or be recommended for hospice.

I felt sad, cornered, overwhelmed, grieving, angry, panicked, even numb, and if I’m really honest–almost relieved. I was not only losing my mother, I was losing a part of me.

How do you know when the end is near?

Do you wait for a doctor or nurse to tell you?

Do you check into the hospital?

Who do you call–what do you next?

All I know is that I had been caring for my mother for a number of years. I was the one who fixed her meals, bathed, her, listened to each breath, monitored everything from her moods to her medicine.

When no one else knew–I knew.

I asked the doctor if we were ready for hospice. He hedged. A few weeks later, I insisted.

Hospice came in and although my mother qualified they didn’t think that death was imminent. Still, something in me knew it wouldn’t be too much longer.

Mother rallied–I felt duped–then she plunged again. In less than six weeks from the time I made that call my mother took that last turn. For three weeks or so, she lingered. She forgot how to eat–and I let her. By that I mean that I chose not to insert a feeding tube. That’s a highly personal family decision, but it was the right one for us. It wasn’t an easy decision by no means–and I knew I’d be the one to witness every breath, every moment. And I took on that role willingly.

I received one of the greatest gifts of my life in those quiet, grueling weeks. My mother taught me how to die. She gave me front row seat–something not many of us in our modern society gets the privilege of witnessing. But I ask, how else will we learn?

How do you know when the end is near?

It’s instinctual, guttural, spiritual, biological–but you’re also subconsciously weighing every piece of information you’ve gathered–as spouse, daughter, son, or friend. You’ve been there all along and even if you’re not medical, you know when a shift has occurred. You’re picking up on cues you’re not even aware of.

Trust that you may know before anyone else knows–and you might not be able to explain why.

In the end I was fully present. Scary–yes. But the frantic fear was gone. It was tough beyond words, but it was also good–necessary–and for me, holy.

Few of us have another way out of caregiving, especially for our elders. We all must die.

Knowing the end is near is a rare gift–one I’m profoundly grateful for.

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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April 8, 9, 2010, I’ll be speaking at Owensboro Community and Technical College in Owensboro, Kentucky. My book, Mothering Mother is their Spring Common Reading Room book recommended for their entire college to read. They’re embracing the message–that when a community cares about caregiving–it makes a big difference.

Caregiving is a community affair. It impacts our society as well as our families. Meeting the needs of one elder can often take a two dozen people–doctors and nurses, rehabilitation therapists, pharmacist’s, the clergy and church members, neighbors, extended family and the list goes on.

But more important, caring for an elder impacts the family. Ask any grandchild who is facing the loss of a grandparent–what it’s like for them and their parents–the worry, exhaustion, grief, and guilt that come in tow. Caregiving can change a family–in good and in challenging ways. Families sacrifice, grapple to find the time and resources needed, and then feel at a loss when there’s nothing more youan do to make things better.

This isn’t an “age” problem. Many teens, college age persons and young adults care give as well. Cancer, mental illness, accidents, and heart disease are just a few of the diseases and circumstances that can enter a person’s life at any age.

And right now, we’re all struggling–financially–to make ends meet. Many families have moved in together and created multi-generational households out of necessity. Loss of jobs and not being able to afford  professional care are just some of the reasons we come under one roof. We pool our resources and do the best we can–we love and give–and hope it’s enough.

I’ll gather with the nursing department, “The Family” psychology class, English classes,give a reading and even do a presentation for the community at the Shephard Center. Many are free and open to the public–so if you live in Kentucky or Southern Indiana –consider stopping by.

I’m grateful for the opportunity to share my story. When a community listens, people come together, learn, ask questions and begin to prepare. Caregiving is so much easier when we gather our resources and share the load.

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When our home became a multigeneration family household, I found that the clutter factor exploded. I did want my mom to move in with us–I was glad to have her–but I didn’t realize that she wanted to keep every wadded up ball of aluminum foil and every plastic bowl or plate she had saved from a frozen meal! Along with the family photographs and heirloom came ten pounds of crap. Pardon my language, but what else do you call it? Standing in my kitchen and surrounded by more boxes than a U-Haul could hold, I found myself on the verge of tears. How could I manage a house of seven people, two dogs, and a cat? I had to somehow tame the mess, feed and nurture them all–including me. Little did I know that clutter came hand-in-hand with caregiving.

7  Tips to Tame the Multi-Gen Clutter:

  • Throw things out when they’re not looking. You have to. If not, you’ll drown on VHS tapes, plastic cups, and magazines from the 80’s.
  • Create a video/dvd/cd archive. Hire your teen or college kid to scan in your photos and then store–or ditch those paper copies. Make a back-up disk and give copies to other family members. Do you know that I have over 20,000 photo scanned now? Crazy.
  • Create centers–places where things go–and then become the enforcer! All coats in the hall closet–not draped over the chair. Have a homework center, medicine center, library book center and  video game center. Be a stickler about making sure everyone puts their items in the centers.
  • Instill a 5 minute clean up time–and do it several times a day. Everybody pitches in–and be sure to do it before bedtime. 5 minutes times 5 people is the equivalent of you doing a 25 minute clean-up alone.
  • Tell yourself it’s for a season. Face it, seven people, seven times seven. You’re just going to have to deal with some of the clutter. Having my mom’s knick-knacks sit around wasn’t exactly my choice of decorating style, but it gave her a sense of home–and that matters more. Today, my mom is gone, and I’ve completely decorated to my taste–but I miss my mom.
  • Choose one surface that will always stay nice. Put flowers on your dining room table and forbid anyone’s junk/medicine bottles/backpacks/mail, water bottles, etc., fill your one serene space.
  • Your bedroom–your sanctuary. Don’t let your bedroom or bath become the dumping ground. Paint one wall a soothing color. Get a new bedspread and decorate your sidetable with things you love–good books, magazines, mints, pens, and few photographs you love. You may not be able to control the whole house, but your sacred space is vital to your sanity, and to your heart.

Stuff is just stuff.

Family is infinitely more important. But you have to be able to locate them…in the midst of the clutter!

Carol D. O’Dell

Author of Mothering Mother, available on Kindle

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