Don’t despair! We all know: Mopping up is hard to do …

Heather Jose

Heather Jose

GOT THE FLU? Or, does the person you’re caring for have the flu?

If you are in a relationship, then you’ve hit some time when your partner has been sick. We’re still not through the 2012-2013 Flu Season, according to the Centers for Disease Control. January through March are the worst three months. A CDC mid-season report concludes that this year’s flu vaccine protected, overall, more than half of the people who received it—but only about 1 in 4 over 65.

Mop bucket for a cleanupBottom line: The flu has touched millions of lives. By April, most Americans will be done with symptoms—and the cleanup for our stricken loved ones. Want more information on this year’s Flu Season? The CDC periodically updates a U.S. map showing the states with the worst outbreaks.

We all can rattle off the recommended battle-plan for confronting the flu: Stay home, sleep, drink lots of liquids, cover your mouth when you sneeze and remind everyone around you to wash their hands frequently.

What we can forget as caregivers—especially as the flu season drags toward its ugly end—is this: We’re not alone. As caregivers, most of us have lived through such extra burdens—on both ends of the caring spectrum. Those of us who have received that extra measure of care should stop right now and say a word of “thanks” for the caregivers who dragged us through illnesses and other messy health crises.

What happens when we hit a long-lasting, difficult illness? This can change any relationship. If you’re married, it’s crucial to find a balance between being a caregiver along with honoring your marriage. That’s not easy for any of us. How do you take care of someone and still treat them as an equal partner? Does resentment set in after a time of assuming more than your fair share of household duties?

I have been fortunate. My husband has cared for me more than once in the midst of illness and other extra-challenging health crises. He writes about this in a section he contributed to Chapter 9 in my memoir, Every Day We Are Killing Cancer. (That book contains more than just my version of the story—you’ll find many different voices sharing their perspectives, perhaps one like your own.) My husband’s main advice: Couples need to realize that, even as their relationships are changing, they remain “on the same team.”

My husband has been through a lot! I will never forget the time that I literally passed out—and then threw up on him within a minute’s time. No marriage needs that.  My husband has washed my hair, cleared my drains, and cleaned up in many ways. The mystery is all gone. I commend him for being able to do these things and still view me as a woman who he desires. There have been many days when I didn’t feel up to par and it put a damper on both of our plans. He takes it all in stride.

We’ve learned lessons, but today I’m asking you to share lessons you’ve learned:

Got a simple tip? Or, a deeper insight? Or, perhaps just a comment about how you and someone you love made it through the depths of illness or other extra-tough crises in caregiving? Please share a thought with us this week.

Great heroism sometimes lies in trying 1 next step along the spiral

Heather Jose

Heather Jose

MY AMAZING AUNT is in the midst of her cancer treatment. She still has radiation treatments and another chemo to get through. It is tough right now—as millions of families know.

Side effects strike hard. Mouth sores have overtaken and the pain is intense. The doctors are pleased, but that doesn’t make each day any easier. When I got the latest update I remembered the quote on a card that was sent to me when I was in the toughest part of my own treatment:

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying,’I will try again tomorrow.'”
Mary Anne Rademacher

Mary Anne is the author of books with titles like Life Begins When You Do, Celebrating the Power of Friendship and Courage Doesn’t Always Roar. Just reading her titles provides the message we all need: When we are caught in the spiral of such intense treatment—and millions of us have been there—sometimes the greatest heroism lies in simply trying to take the next step. Trying.

Ancient spiral staircase, photographed by Ines Saraiva and released via Wikimedia Commons.

Ancient staircase, photographed by Ines Saraiva shared via Wikimedia Commons.

Treatment, like life, has phases. And while I fully embrace killing cancer everyday—that overall goal is right there in the defiant title of my own memoir—you need to know that in some phases of cancer treatment that battle is a lot more humbling. I had days when killing cancer simply meant standing for short periods or even just giving in to sleep. There were times when attempting food once in the course of the day meant I was trying—and in trying I was succeeding for that day.

Each person’s journey is different, but my tips to my aunt begin with: Right now, you’re a hero with each new day that dawns in your life.

Like a lot of us, at first, my aunt thought she would tough it out and avoid some of the strong drugs her doctors offered to deal with side effects. My advice: Take the meds rather than toughing it out. Sleep as much as possible, since the waking hours are no fun right now! Trust that your body is surviving. Trust that each day’s step is heading the right way along the spiral.

My advice to her equally amazing husband is: Encourage her to eat, but not to make that the only conversation in the house, to talk to her about things they have always enjoyed discussing, and to recognize that sometimes holding a hand is the greatest comfort there is.

I encourage both of them to look forward to spring, as this one will bring new life like no other, to know that they will look back on this time as a dark time but the point is—they will be able to look back. Above all: Be gentle with each other.

Do you have advice for folks going through such struggles?
What has gotten you through the tough times?

A Caregivers Dream in a Basketball Pass … Just Watch This Video

Heather Jose

Heather Jose

I dare you to watch this video—without crying. It has been a viral sensation as of late, and it speaks volumes about what is good in this world.

Why am I sharing it with you here at WeAreCaregivers? Because as much as this impacted a kid’s life, it did even more for his mom.

One of the categories of caregivers that we recognize as very under served are parents with special needs children. The truth is that special parents spend much of their time and energy standing up for their children. Even the smallest tasks can be a struggle. But the struggle is necessary in order to help these kids be a part of normal daily life. Victories come in the smallest tasks, and are celebrated in a way that few of us realize. I get the chance to see that as I work with children as an occupational therapist.

It is wonderful.

What parents can’t change is the way other people treat their children. I am sure all parents would wish this for their child …

(Click the video screen below to watch the short film from On the Road with Steve Hartman. The CBS network allows us to share the video clip with you, but does require viewers to watch a brief commercial before the actual On the Road story starts. It’s well worth the 30-second wait.)

 

Test Anxiety: Let’s start by admitting we all suffer this waiting game

Two boys getting a checkup.

SEE THAT BOY AWAITING THE TEST? The anxiety often is worse than the test itself. (These young brothers were photographed by FEMA emergency service workers as they got checkups after a hurricane displaced thousands of families.)

MY TURN for a check up rolled around this week.

Heather Jose

Heather Jose

Overall, the trip to the clinic for these tests wasn’t too inconvenient, just a day spent doing a scan, some labs, and seeing my oncologist. I’ve done many of them in the past fourteen years since learning about the cancer. You would think that I would be used to it by now. I have the routine down. I can fit everything that used to take visits on two different days in to a matter of hours.

It’s the Test Anxiety that gets me. Every time. This visit I thought I was doing really well. I hadn’t been fretting about it as I sometimes do. On the days leading up to the appointment, I wasn’t overly sensitive to an ache or pain thinking that it could be cancer. That was good.

But that anxiety crept up on me as I waited (and waited and waited) for my doctor to come in to see me. I was surprised that my bone scan results weren’t available yet. That was a little unusual. I began to wonder what the hold up might be. Why was my doctor taking so long? Was she making a plan? Were my scans showing activity?

Was this the day my life would change—again?

As it turned out, everything was fine. My scans were stable. My doctor was simply running behind. I could feel my body relax as I heard the news.

But, is this a familiar story in your life, too?

It is important to realize that there is a level of anxiety that surrounds doctor visits. At one time, my own stress level would elevate weeks before a visit. On more then one occasion my husband or friend would have to talk me off the ledge. The stress could become all consuming. I knew that the results would affect the life that I was living. It is challenging even now as I try to work and live a crazy life knowing that everything could change in a single day of testing. I don’t like to tell people about it or make it a big deal—but it always is there.

Test anxiety is one of those things that isn’t talked about enough. Yet it affects how we deal with others, especially our caregivers. It can make seemingly normal situations and turn them upside down. If not recognized as such, it can cause hurt feelings. However, when acknowledged and addressed as a real issue—it is manageable.

We even laugh about it at times. And that is healthy. It feels good to be honest about these fears, doesn’t it?

Well, I have shared honestly today. Come on: How about you? Share a story with us.

Recall Love Languages? Think about them in this new way …

Heather Jose photo.

Heather Jose

Do YOU KNOW your Love Language? Are you among the millions of us who have read The 5 Love Languages: The Secret to Love That Lasts?

Gary Chapman has sold more than 6 million copies of the book in 38 languages. As incredible as this may seem, his book has ranked in Amazon’s top 100 best sellers for more than a decade.

At this point, Chapman’s 5 Love Languages aren’t much of a “secret” any more. His key insight is that the word “LOVE” means at least five distinctly different things to people. One person feels loved through words of affirmation; another through quality time; someone else through receiving gifts; or acts of service; or personal touch.

This means that we each have different things that make us feel loved. For many years, Chapman has been helping couples improve their relationships by learning about these distinct love languages.

Here’s the new insight I had this week…

Love Languages for Caregivers

Dr. Chapman recently was on television with Oprah. Seeing that interview got me thinking: This isn’t just about husbands and wives. Chapman’s work also relates to each of us as caregivers as we seek to meet the needs of those we care for.

Learning about Love Languages starts by recognizing this basic truth: Experiences that mean a lot to you, that make you feel loved, may not hold the same meaning for the one you are caring for.  It is valuable to meet the needs of the one you are caring for in a way that really speaks to them.

What if you could eliminate some of the things you may be doing simply because they are not speaking your companion’s language?

Let’s Get Personal

That’s what it takes—personal reflection. What is your Love Language?

I am an “acts of service” person. Nothing says love like cleaning my kitchen! On the other hand, my husband is more of an “affection” kind of guy. So while I feel loved and cared for when he does something for me—he does not respond to an act in the same way that I would. Kitchen cleaning just doesn’t speak to him in the same way!

This idea isn’t relevant in all cases. It seems to me there are periods of caregiving when these languages may not be quite as important. As my father declined in recent months, a gift of food—something he once would have loved—lost is allure for him. In fact, toward the end, the most important thing was just time spent by his side.

As with anything in life, these languages will ebb and flow—and may change over time—but consider pulling out a copy of Chapman’s book and reading it with fresh eyes. His wisdom may help more than you and your spouse!

How about you? Add a comment. Tell me what you think.

For Valentine’s Day, we all think of love. What about caring?

Heather Jose photo.

Heather Jose

Happy FebRUARY 14th!

We don’t celebrate Valentine’s Day in my house, at least not in the traditional sense. Haven’t in all the years of our marriage. My husband jokingly says “Why does everyone celebrate the day before my birthday?”

Yes, he was born on February 15.

However, we do celebrate February 14th. I like that so much better. There is no money involved, only creativity. The end product might look rather simplistic (take a look at several that I’ve saved, at right)—but the meaning surpasses any card or flowers that would have been purchased. You see, each year we simply make each other a card. The words inside are much more important to me than anything a third party could concoct. I usually discover the homemade card from my husband, tucked it in the corner of my bathroom mirror—or balanced carefully on the faucet after he has left for work.  Most years, he finds the card I have made inside the bag he has packed for his annual birthday snowmobile trip.

LOVE’S GOOD,
WHAT ABOUT CARING?

We call the 14th the holiday of love, and yet I prefer to think more about care. Last year we exchanged cards less than two weeks after Larry’s mom had passed away. This year we will be doing so right after I lost my dad. Though our love certainly is important—the care that we have shown each other has always been much more the focus.  Our cards recount the things we are grateful for, the accomplishments that have made us proud and our commitment to the future.

CONSIDER: What if more people used February 14 to show gratitude for caring?

What would happen? Rather than pairing off we could use the day as a chance to share gratitude for many. It could be a “thank you” day for people who make a difference to us. I think we’ve got another new holiday idea for our 2013 Caregiving Calendar. (Read more about how readers are helping us create a new Caregivers Calendar.)

Happy February 14th!

And, thank you for sharing this journey with me.

Our Sandwich Generation? Millions of us find love—and stress.

Heather Jose photo.

Heather Jose

SANDWICHED? Are you caring for both younger and older relatives? You are not alone! My colleague, sociologist Dr. Wayne Baker, is devoting all this week to an OurValues series exploring the huge Sandwich Generation in America. A new Pew report reveals that half—that’s right, half—of all adults in their 40s and 50s are sandwiched. Me, too. That means we have at least one parent over 65 as well as at least one young child—or a grown child we are helping to support. We’re like sandwiches providing various forms of sustenance to younger and older generations in our families.

Please enjoy Dr. Baker’s OurValues series all this week.

Classic Peanut Butter and Jelly SandwichAnd, enjoy all that we have to offer at We Are Caregivers. Today, I want to recap some of the resources we have been providing to caregivers since this website was founded in mid October. The Pew report shows that the Sandwich Generation is fairly happy, overall. That sounds accurate to me, as a sandwiched adult myself. We are able to care for others because we love them and we keep finding ways to refresh our own spirits, each week. However—Pew does report that sandwiched adults are more likely to be financially stressed and are likely struggling to find enough time to get everything done. Collectively, our stress is rising!

Our specialty at We Are Caregivers is sharing ideas for coping, reducing stress and keeping our minds, our bodies and our spirits healthy. Here are some of our stories that already are helping readers:

Pew Says We Face Time Crunches:

This year, try Micro-Resolutions in 5, 10 and 15-minute segments.

Do You Fear the Looming Calendar?

Our invitation: Help us rewrite a new Caregivers Calendar.

Are You Too Busy for Spiritual Surprises?

Let me tell you about: Grabbing life’s Sunset Moments.

Sorry that You Disappointed Someone Recently?

Discover: Disappointing someone may be the key to your own health.

Is Loneliness a Problem in Your Family?

Consider: Pets are a spiritual boost for millions of Americans.

Wondering If God Is Still Out There?

Join us: Share a snapshot of a GodSign you’ve spotted!

And, Last But Certainly Not Least …

Always: Be Thankful! Here’s how I do it.

A Grief Observed: Remembering Dad … and our family

Heather Jose photo.

Heather Jose

novelist Madeleine L’Engle, thanked C.S. Lewis for writing A Grief Observed. “I am grateful for his honesty, because it makes quite clear that the human being is allowed to grieve, that it is normal, that it is right to grieve, and the Christian is not denied this natural response to loss.”

In his book, Lewis argues that we should talk about death and tough subjects like cancer, which felled several of Lewis’s loved ones. Talking about these things helps to disarm paralyzing fears and frees us to appreciate “how much happiness, even how much gaiety” we experience with our loved ones even in the midst of life’s most painful times.

Since launching We Are Caregivers in October, we have not written much about grief, but it is a natural part of life. After 9/11, Queen Elizabeth put it so simply: “Grief is the price we pay for love.” One of our authors is the Rev. Dr. Rodger Murchison, author of Guide for Grief.

Today, though, my column is personal. I’m sharing my story.

Remembering Dad

My father passed away this week. We knew it was coming. It has been years since we learned that he had corticobasal degeneration. However, that did nothing to lesson the pain and shock. I got the call on Friday the 18th that we should get there if we wanted to say good-bye. My husband and I were actually on a much-anticipated night away. It took most of the night but by late Friday my two brothers, Mom and I were at his side.

The disease had mostly taken Dad’s ability to talk, but on Saturday morning he mumbled his last words. “I love you,” he told Troy, his firstborn. I find it particularly fitting since they sparred more than the rest of us. I didn’t need to hear that again, but maybe Troy did. On Saturday we brought all of Dad’s grandkids in to say goodbye. There were heartfelt tears as they told Pops that they loved him. Our children are young, ranging from 15 years to only 2. It was an amazing thing to watch them comfort each other and grieve together.

Monopoly TokensWe thought that he wouldn’t make it through the night. We decided to take shifts in order to have someone by his side. However, he pulled through. We spent the next four days and nights by his side. At times we watched TV or read, but on two occasions we broke out the Monopoly game and the beer. Dad would have loved that, his kids, his favorite game, and a beverage. One evening when Mom had gone home for a little bit, Dad’s breathing grew more labored. We stopped our game and prayed to God to take Dad home. When we said, “Amen,” Dad sighed—a big, comfortable sigh. It was amazing.

My father passed on Thursday morning. I like to think that he wanted to eat breakfast in heaven that morning. He loved breakfast at the family table at any local restaurant. I can imagine him walking in dressed in his suit and tie and introducing himself to all his new friends with a handshake.

I am going to miss him so much. Yet, I am glad he isn’t suffering anymore. I will never forget the time spent with Mom and my brothers over the past week—literally more time than we have spent together in years. That is what he would have wanted, for us to be together. Our families have been extremely supportive, keeping things rolling while some of us pressed, “Pause,” on our lives to be with him.

We are in the process of putting together a celebration for his life, and it was an unbelievable life. The stories of the lives that he touched are already pouring in. I think Troy said it best, though. He loved God. He loved people.

You can see his obituary at the Life Story website.

Like Micro-Volunteering? Turn that smart idea into Micro-Resolutions!

Heather Jose photo.

Heather Jose

MICRO is the new buzzword for squeezing more time from your over-scheduled life. Micro-volunteering is making headlines, especially as thousands pitched in for the National Day of Service. There’s a lot of power in this bite-sized idea.

Here at WeAreCaregivers, we are helping with this frustrating situation: Did you enjoy my friend Dr. Benjamin Pratt’s series on rewriting a new Caregivers Calendar? If you missed it, here’s Part 1 and here is Part 2 of Ben’s creative invitation to readers. You’ll hear more about Ben’s idea throughout 2013—for example, Ben’s new Our Inauguration Day is coming up Monday. Keep sending us your ideas at ReadTheSpirit@gmail.com, because Ben hopes to keep going through the whole 2013 calendar.

AND TODAY, I want to get serious about our daily time squeeze. I’m proposing MICRO-Resoutions. You’ve probably thrown out your “old” resolutions from a few weeks ago, haven’t you? They likely were too time consuming. Well, there’s a reason that MICRO is so popular right now: It works!

MICRO-Resolutions Work in 5, 10 or 15 Minutes!

Stopwatch in HandThis year, I don’t see a magic window of time opening up so that I can devote hours to wellness. But I am not letting that stop me.  I can stress and make poor choices or I can do the best with what I have.  I am choosing the latter. I’m admitting: On a daily basis, there’s no time to prepare elaborate meals or long workouts. Most days, I can count on only a few minutes worth of wellness. Here are some ideas for fitting in goodness on a time crunch. Add a few to your crazy day—and, please, share your ideas with us.

In 5 minutes time you could…

Brew a pot of green tea
Call and schedule a doctor’s appointment
Breathe Deeply
Do pushups and situps
Make a fruit and veggie packed smoothie
Get a mini massage
Enjoy the fresh air
Take vitamins
Pray

In ten minutes time you could…

Plan healthy meals for the day
Work out a schedule that includes time to exercise
Go outside and play in the garden
Visualize
Cut up fresh veggies to grab and go
Snuggle with someone you love
Pack a great lunch for work
Play tag with your kids or fetch with the dog

In fifteen minutes time you might…

Put together a meatless meal
Call a friend
Read something inspirational
Yoga
Go for a walk or jog
Get a jump on bedtime
Decompress with music

I hope as this year begins to take shape you can carve out a little time for yourself as well. You need it. You are worth it.

Please, leave a Comment below or you can email us anytime at ReadTheSpirit@gmail.com

 

Readers are chiming in! Help us celebrate 2013 with new holidays!

BY DR. BENJAMIN PRATT

Benjamin Pratt

Benjamin Pratt

We’ve touched a nerve! We’ve tickled a funny bone! We’ve got readers marching up to their calendars and bravely declaring new holidays! Just joining us? Here’s the original column last week that touched off this year-long effort to redraw the calendar. Why? Because caregivers often regard a new calendar as a dread reminder of looming stress.
Not these readers!

THE WEEKLY E-UPDATE

Kristin Coron, a mother of two from Virginia, has lots of friends involved in caregiving. Taming the calendar is crucial, Kristin says, sharing an idea from a friend who works full time, has three teen-aged children and balances the effects of a chronic disorder. “Each Sunday she composes an email that lists the week’s events, after-school commitments, celebrations and appointments. She sends it to her family. What a great way for everyone to know when they are needed—and when an extra-busy week means they should step up with extra help!

TAKE-OUT NIGHT!

Kristin shared a second calendar-taming tip: “Every head cook and bottle washer should implement this one—Monday night is Pizza delivery night!” Or, pick your own most-stressed evening. Kristin says her friend hit on this idea when Mondays became a traffic jam in the family calendar. This weekly holiday from the kitchen tamed the stress. Don’t like pizza? Make it Chinese night. Or, pick your own cuisine!

SNAKE DAY

Winter weather tends to lock up our families and our spirits—so get outside as soon as possible! Try celebrating Snake Day, says the Rev. Judy Hall, who describes herself as “a deacon in the United Methodist Church, a pastoral counselor and presently the caregiver of my wonderful husband of 40 years.” Judy also lives in Virginia and says her own love of early spring walks converged years ago with a practice she heard about from a biologist in rural Virginia: Snake Day. He described it to Judy as the point, in early spring, when snakes feel it is warm enough to emerge and sun themselves. Judy says she has been enjoying such spiritually uplifting walks since her teen-age years. She says: “Part of that practice is beginning to see and grasp the signs of hope so extravagantly announced in the natural world by the coming of spring. It makes me think of Robert Frost’s Nothing Gold Can Stay.” The poem opens:
Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.

COOKIE-BAKING DAY

Cookies aren’t just for Christmas! Nor are family gatherings in the kitchen. Phyllis Smith, a retired teacher and now a caregiver from Texas, shared this idea for a new family holiday. She writes: “This has been one of the best ways that I have found to get myself out of the slump that sometimes comes with daily caregiving. I had not thought of it as a celebration but it really does take on a feeling of joy—especially as I see the joy that it brings to others. So, why not declare an occasional holiday for your family and friends. I do this about every six weeks. Many times I do it alone and it still reliably lifts my spirits. Of course, the best times are when my grand-children are with me. They love to help and then to take what we have made to the nursing home. We vary what we bake. Around holidays, I bake and decorate sugar cookies or a Texas sheet cake—because I know the nurses and their assistants love that! When my grandchildren are here, we usually do snickerdoodles, chocolate chip cookies, or brownies because that is what they like. Sometimes, I bake for the residents at the home and they like banana nut bread or other breads. Mix it up! Have fun. Declare it a Cookie-Baking Holiday!

NOW: IT’S YOUR TURN

I’ll be back with more—but only if you chime in with your ideas to encourage more of this wise-and-wacky redrawing of the calendar. Add a comment via the link above—or email us at ReadTheSpirit@Gmail.com. Just joining us? Once again: Here’s the original column last week that touched off this year-long effort to redraw the calendar.