Facing Our Biggest Fear: Come Rewrite the Calendar with Me?

BY DR. BENJAMIN PRATT

Benjamin Pratt

Benjamin Pratt

Is the calendar your enemy? Many people see hope in a new calendar. But caregivers? We see looming medical tests and family traditions we can no longer follow. One woman told me that, year after year, she dreads March—because she lost six loved ones all in March! The winter months can be especially dark. (Earlier, I shared a prayer for light.)

As 2013 opens, I’m ready to tackle the Big One: Time itself! At least, I’m tackling the way we let time shape our hopes and fears. I’m marching up to the calendar, pen in hand, and I’m rewriting the holidays! Not only that, I’m declaring new holidays with twists guaranteed to boost my spirits.

Come on! Try this with me through 2013. Email us with your new holiday ideas at ReadTheSpirit@Gmail.com. As I spot great reader contributions, I will weave them into our new Caregiver’s Calendar in occasional updates. Together, dear readers, we might get a creative, hopeful movement going. Is your mind rolling, already? I refuse to complicate this brave new idea with a lot of rules, but let me strongly recommend one practice: As you dream up a new holiday with me—plan for someone to cover your caregiver duties on that day. It’s a very valuable idea. We all know that physically and spiritually healthy caregivers pace themselves. So, plan ahead for days “off.”

Here we go! We’re starting with some “real” holidays, anniversaries and milestones. Then, we’re adding some twists.

OUR INAUGURATION DAY

JAN 21—Today, let’s stop and solemnly take an oath as volunteer caregivers. When we assume we have no choice about our work, we are walking a dangerous path. Research shows that caregivers who see their work as a personal choice feel more purpose, vitality and joy. Today, take a break and recite this inaugural oath: “I give myself freely, with love and devotion, to choose each day to be a volunteer caregiver of my beloved. I shall do so by calling upon the support of my community and my God. I shall seek to care for myself so I may do my task with purpose and devotion, so help me God.”

GROUNDHOG’S CHOICE

FEB 2—The groundhog teaches us that we all have a choice. Even if it feels as though the whole world is watching, we can say: “Yes” or “No.” As caregivers, we like to please. Most of us say “Yes” until we are exhausted. So, as the world watches Punxsutawney Phil, we’ll each pick a moment to say: “No.” Need support for that idea? Read Cindy LaFerle’s column: Disappoint someone today? Good. That’s a start.

SUPER BOWL OF LAUGHTER

PICK A DATE—This works! My wife and I experienced it last year and I urge you to join me in making it an annual celebration. Here’s what happened: My wife was recovering from surgery. One day, three of our friends conspired to send us a flurry of texts and emails to make us laugh. What a boost! Ask friends to give you this gift on February 3—Super Bowl Sunday—or ask them to surprise you one day. Imagine wondering when this might descend on you? Better yet, conspire with your friends to give a Super Bowl of Laughter to someone else!

VALENTINE’S FLOWERS

FEBRUARY 14—Who needs flowers? You do. A bouquet works, but consider planning ahead for a blooming pot of Narcissus on Valentine’s Day. These blossoms are bright, white stars reminding you of love and hope.

NATIONAL TALK TO YOUR
DEAREST FRIEND DAY

PICK A DATE—How long has it been since you talked to your dearest friend? Yesterday or years ago—it is time to call again. Use a telephone or Skype—but make the call. Remember: We express our love more by listening than by talking. So, the real focus on this holiday is the listening part of these calls. Set aside enough time; encourage your dear friend to listen to your stories, as well.

MILLARD FILLMORE
BATHTUB SOAK

MARCH 4—That’s the day our 13th president left office. We don’t recall much about him except his installation of the first bathtub with plumbing in the White House. So, let’s celebrate the end of his hard work with warm water, bath salts, bubbles, rubber ducky, candles and music. Sink in. Thank Millard!

CORDELIA DAY

PICK A DATE—Plan ahead for this special occasion on which you will share your personal story honestly with a trusted friend. Too often, we are like Shakespeare’s Cordelia in King Lear. She is a noble figure caught up in the tragedy of Lear, partly because she has difficulty expressing herself to her father: “I cannot heave my heart into my mouth,” she says. As caregivers, our feelings often are suppressed until they lead to confusion. Sometimes they spill out in sighs, tears or laughter—the languages our body uses when we don’t have words. On Cordelia Day, honesty rules. Think of this as an in-person National Talk to Your Dearest Friend Day.

NATIONAL “SO WHAT!” DAY

APRIL 1—Perfectionists are on a steep slope as caregivers. We need the spiritual wisdom of imperfection. Instead of playing practical jokes on April 1, give yourself permission to say: “So what!” Today, it honestly doesn’t matter if the floor isn’t vacuumed, some dishes aren’t washed, our loved ones sleep in their pants and not their PJs. Obsession with perfection eventually drives everyone nuts. Today, reset your priorities: Let go! So what!

AND IN THE SPRING? IT’S YOUR TURN

There’s the first quarter of 2013. 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.

 

For millions of caregivers, the little New Year’s Resolutions are biggest

Heather Jose photo.

Heather Jose

GOT BIG PLANS for New Year’s Resolutions? Are you already fearing they’ll go bust?

This year: Think small.

Some people don’t like to make these resolutions, but they feel good to me. It’s a chance to think about what I would like to do better and what goals are on my radar screen. This year I have goals related to health, work, and financial matters. None of them are earth shattering—but I have found that the little things matter.

Eternal Clock by Robbert van der Steeg, photo courtesy of Wikimedia Commons.

Eternal Clock by Robbert van der Steeg, courtesy of Wikimedia Commons.

When we are in the midst of caregiving, time feels like our enemy—always too little of it. So, in making resolutions, let’s focus on things we actually can fit into our lives. I believe strongly that the best way to be good caregivers is to take a little time for ourselves. As we start 2013—focus on the little.

Five minutes is enough to make a cup of tea, do some push ups, write in a gratitude journal, or pack a healthy lunch. Ten minutes allows me to work up a sweat, plan healthy meals for a week, pray, or chat with a friend. Just a little break—to do a little good—can make a huge difference in mindset.

This year I am rewarding myself for staying on track with my goals and saving money here and there. Rather than pay for a gym membership or a meal plan I am going to pay myself for following through with my own simpler, less-costly goals. At the end of the year I should have a nice little bit of cash for something fun.

That is motivating to me, but you have to find what works for you. Maybe you can plan lunch with a friend or get a pedicure or go to a movie on a regular basis.

With any resolutions, the important thing is to make them obtainable, especially at first. When we start with something that takes all of our willpower, it is inevitable that we will get discouraged and quit. It is easy to revise goals later in the year and make them harder—but it feels like a letdown if we do the reverse.

Keep in mind that taking care of you is essential to taking care of a loved one. We can’t provide care if we become exhausted and find ourselves under the weather.

What are your resolutions? Would you consider making a list of five-minute or ten-minute things that would bring a small dose of health and wellness into your day?

Heather Jose, a 10-year survivor of stage IV breast cancer, wishes you a Happy New Year!

 

Stressed at the holidays? Seize Sunset Moments!

Heather Jose photo.

Heather Jose

MY HOLIDAY CARD to caregivers lacks the snows or sleighs or Santas that grace so many Christmas cards. Instead, I’m sending you a bright image of sunset along “our” Florida beach. Earlier, I wrote about this beach and the tough choices we face when family traditions must change.

As we all head through these days leading to a New Year, remember: While holidays are stressful, I don’t think that’s the intent of a holiday. Like you, I’ve got a long To Do list, while trying to keep smiling at my children—who are driving us crazy from being off schedule. Then, there are the older folks who we work so hard to bring to gatherings—only to discover that they are ready to go home. Know these feelings?

Let’s refocus on the best images in these fleeting days. Click on the “View Entire Gallery” in our Godsigns photo gallery (at left on this webpage). If you click on an individual photo in the gallery, you can read the captions at your own pace, including a couple of my photos. (Now, that gallery is in a small, pilot phase. In 2013, it will grow significantly. Right now, you can add your own photo via the “Upload Your Own Godsign” box at left.)

And now, from my family to yours …

Sunset Moments

Every year, I am reminded that life is a series of opportunities that I must seize when presented—not pushed off until I think I can find a better time. I call these sunset moments.

The reminder comes when my family vacations during the year-end holidays along the Gulf of Mexico. Every evening as the sun begins to set, we gather to watch the beautiful display of color over the ocean. It is impromptu, and spectacular on a clear night. Drinks in hand we toast the beauty and reflect on life for a few minutes.

It always happens, though, that someone is missing. Too busy running an errand or showering before a night out to enjoy the splendor. I’ve done it myself. Thinking that I’ll go out tomorrow instead.

What I’ve learned is that we can’t recreate that sunset. Invariably the next one is covered with clouds or undetectable because of rain. The splendor is gone.

Life is full of sunset moments. Chances to take a minute or two to enjoy the life that is ours. To laugh, to reflect, to be fully present—that is a one-time chance.

May you choose to fill your life with sunset moments.

Heather Jose, a 10-year survivor of stage IV breast cancer, wishes you a Merry Christmas and a Happy New Year!

What do we do when joyful traditions must change?

Heather Jose photo.

Heather Jose

My parents were married on December 18, 1965. Since my dad was a teacher, they went on their honeymoon during Christmas break. They took the scenic route through South Carolina, but eventually ended up at the Three Crowns on Lido Beach in Sarasota, Florida.

What started as a honeymoon became a tradition. My parents returned to Lido Beach for a few years, but as children came along they found a little motel with efficiency units in Venice. It wasn’t until 1980 that they returned to Lido. The motel had changed things and they were looking for something else, so they came to look at a timeshare. I can still remember looking around on a hot day, wanting nothing more than to go swimming. Long story short, my parents liked the place—and the fact that they would always have the same room—so they bought in. It was literally right down the beach from where they honeymooned.

Sunset on Lido Beach Sarasota Florida.

Sunset on Lido Beach Sarasota Florida. Courtesy Wikimedia Commons.

We never missed a year. Each Friday when school was done we would load into the family vehicle and drive straight through. It wasn’t long before we knew many of the people who owned the same weeks as us. As Michiganders would ask how we could leave at Christmas time we would simply smile. Over the years the relationships grew more and more with our friends on the beach. Dad met one of his best friends there. He and Kenny were double trouble, whether on the golf course, the beach, or out on the town. We would spend all day on the beach or at the pool and then regroup for dinner. it wasn’t uncommon for 20 or more of us to go out together.

As I moved out and married my husband, I began an every-other-year plan for Christmas in Florida. However, after cancer entered my life it became clear that this tradition was one we wanted to pass on to our children. We picked up the yearly ritual again and this tradition continues today.

WHEN THINGS CHANGE …

Families change. The generation of kids when this all started—now is a generation of parents with kids of our own. We fill more and more units at our timeshare and our kids look forward to football games on the beach. Those are the good things. but as we all know there is bad with good. Now neither Dad nor Kenny are able to make the trip. Their health won’t allow it. Each year it is a question as to whether or not we should go and leave Dad behind.

Should we continue the tradition that he started or forego it in order to be at his side?

We have chosen to continue the tradition of Lido Beach in honor of him and our best family memories being made there. You can feel the excitement build in the same way it did when I was growing up. Once we have arrived—everywhere we go is accompanied with a story about Dad. We go to his favorite breakfast spots, and his dinner places, too. I love that my children can know a place that Dad loved. They don’t have the pleasure of having a healthy GrandPaul (or Pops) like many other kids their age. But, it seems right to share his spirit and love of this vacation.

Guilt travels with us too. We always wonder if we made the right choice. This is not easy. We took him with us for as many years as possible, until the enjoyment of it was gone for him. I think he would want us to continue. I really do.

Traditions bring joy, but they can also bring pain as they change without us wanting them to. This time of year, we all have dozens of traditions that cascade down around us like the winter’s snows. They’re stressful; they’re delightful; they’re emotional. And when a loved one at the center of that tradition is gone, or perhaps is so disabled that they can no longer fulfill the tradition … Then, what do we do?

SHARE THIS COLUMN WITH FRIENDS?

PLEASE: Feel free to reproduce or repost this column and share with friends—or use it to spark discussion in your small group. If you do reproduce this, please credit …

By HEATHER JOSE …
And include a link to www.WeAreCaregivers.com

Three words to light our way this Thanksgiving

By HEATHER JOSE

IT’S MY FAVORITE kind of morning:
The coffee is brewed and in my favorite mug. The house is quiet—just me and the dogs enjoying the stillness as the world wakes up.

Ahhhhhhh.

I live for moments like this, but only because they are rare. The pace around my home is usually quite fast. Sometimes I wonder if life is passing me by.

As Thanksgiving approached this year I wanted to do something to help us all stop and think for a minute. If you are on Facebook you may be seeing a barrage of “Thankful” posts. I think that’s great. I used to do a ”Thankful Thursday” post each week in an effort to remind myself of all the blessings I have received.

A FRESH THANKSGIVING IDEA:
GO OLD SCHOOL

This year, though, I decided to kick it old school. I bought a piece of poster board and a bunch of Post-it notes. I grabbed a Sharpie and wrote GIVE THANKS in the middle of the board. I put the board up in a central location in our house and posted the first “I’m thankful for” note. Then, I threw open the invitation to the whole household.

Our board is filling up fast. I love it. Sometimes I forget all the blessings in my life. Sometimes I just think of the changes. There have been many.

It wasn’t too long ago that we would attend two Thanksgivings in the same weekend, one for my husband’s side of the family and one for mine. This year I will host one small gathering. I miss the old days when everyone was healthy enough to sit down to dinner together and even play cards or Turkey Tracks afterwards. Yes, you read that right, in my family we play dominoes, specifically a game called Turkey Tracks! (Do you have a family game tradition? Add a Comment today and tell us what you like to play after the plates are cleared away.)

THREE WORDS
TO LIGHT OUR WAY

I miss the people in our family who have passed on and those who are too incapacitated to participate anymore. I am sad that my children don’t have all of their grandparents (and great grandparents) to share in the day of celebration.

Heather Jose photo.

Heather Jose

But always, I will be thankful. And I will make Thanksgiving special for my children and the family that will be with us. The Post-its this year are my reminder of our many blessings.

The three most important words I can share with you this week: Always be thankful. That’s a message from me—and I know that it comes, as well, from all those  who we remember at this time of year:

Always be thankful.

Heather Jose is author of Every Day We Are Killing Cancer, a book packed with inspiring stories of gratitude for the many people who rallied around Heather during her life-and-death struggle with cancer.

Let’s be “Thrivers”! Don’t settle for being “Survivors”!

Heather Jose photo.

Heather Jose

BE A THRIVER! I love that statement. It implies action and an attitude of gratefulness. It says that how we approach things, every day, matters in the long run. It affirms that each one of us can make a difference in our health and wellness.

That’s why you will hear more about cancer “thrivers” than cancer survivors here at WeAreCaregivers. In addition to these new weekly columns, I continue to write for Breast Cancer Wellness magazine, where our whole team has been trying to change the way Americans talk about cancer: We want more people to declare that they are cancer thrivers—not just survivors. Since launching and promoting this term a couple of years ago at the magazine, we are seeing it show up in national news reports regularly, these days. And that’s a major boost for people with cancer—like I was and like millions of others are today—in completely rethinking our approach to this battle.

Cancer is a funny thing. It can bring out the best and the worst in people—depending on your approach to life. I am not arguing that someone who decides to be a thriver won’t die. But, I am arguing that people who decide to thrive will truly live, no matter how many days they have left in this world. And guess what? We are all going to die, so my goal is to make the most of my days. Acknowledging death actually can help a person move toward a more fulfilling life.

You may think that I’m just an optimist. You may fear that this isn’t possible for you. But, over many years, I’ve learned that anyone can learn to thrive through cancer. This may take a major adjustment in the way we view our world. But the rewards are great—a life of purpose, one lived with eyes wide open to the wonder of each day.

“CANCER THRIVER”? WHAT DOES THAT MEAN?

Today, I am a writer, a speaker, a teacher through workshops that I lead. But, I am also a woman. A wife. A mom. A daughter. A friend. And, like millions of other people, I sat in a doctor’s office one day and listened as he told me to “get your affairs in order” because I had breast cancer. That was a life-changing day, because it started me on the path to my real life, the life that I believe I was created to live.

In the first letter that I sent to my family and friends to tell them about my cancer, I wrote: “We are not saying: Why me? Rather, we are saying: Try me!” You could say that letter was just me being young and dumb at the ripe old age of 26—but it set the tone of my life from the start. I knew that I was going to do everything I could to kill the cancer and live the best life possible. My intuition told me that I needed to find out what I could control and take charge of it, because that made me feel better. I also felt deeply that focusing on the extremely dreary statistics was exhausting and could negate the best things that I had done for myself each day.

I have spent a lot of time thinking and writing about what leads some people to thrive, while others cling to survival mode. You can read all about how I came to these conclusions in my memoir, We Are Killing Cancer Every Day. The book also includes perspectives from lots of people who were my allies in the struggle. I’m not claiming that you can bottle my specific formula for every other person facing cancer. But, here are a few principles that I’ve found mark true thrivers:

STRENGTHS FIRST: Thrivers focus on their strengths and build on them. They acknowledge their weaknesses and let them go.

WE’RE IN CHARGE: We are in charge of our own bodies. Thrivers are willing participants in our own health; we are not waiting for someone else to fix us. I chose to work closely with my medical team, rather than passively receive medical treatment.

SIFT THE INFORMATION: Thriving is a process of taking in information and using the very best of it to keep moving forward. This does not mean getting bogged down in the endless information that can capture our minds in a negative cycle. For example, I decided that I did not need to know the possible side effects of every medication that was prescribed for me. Focusing on those long lists of scary possibilities would have been too depressing. My husband volunteered to take in all those facts—just in case we needed to know them. I’m not alone in making this choice. You will find in Godsigns that Suzy Farbman and her husband made a very similar division of roles as she fought to overcome her cancer.

NURTURE YOURSELF: Greet each day with a spirit of making good choices and living fully. Rest when needed. Don’t worry if you stray occasionally. I still recall a conversation with a woman who was skeptical of my strict diet while I was battling cancer. She implored, “Don’t you ever just want to have a chocolate chip cookie?”

I told her, “If I want a cookie, I will have one and move on. But, most of the time, I choose a life watching my kids grow up over my desire for a cookie.”

BAD STUFF WILL HAPPEN; CELEBRATE THE GOOD: Because of the impact of cancer in my life, I can say truthfully that a million good things have happened. It has helped me to focus on the good and believe that anything is possible. It has confirmed my belief in God. It has shown me that family is not a right, but a gift, and that families are built in a lot of different ways. It has revealed my passion for life.

Life is full of choices. Thriving through adversity is one of them.

Caregivers: Who are we? How many of us are out there?


Heather Jose

AS WE BEGIN our journey to reach out and connect caregivers, we should discuss who we are. Over time—as you follow our columns and as you respond to questions on this website—we will be addressing more specific information for different groups of caregivers. We know that caregiving can take on many forms and roles.

CAREGIVERS: WHO ARE WE?

This is not a complete list, rather it is a starting point …
MILLIONS ARE INVOLVED: More than 1 in 4 American adults are caregivers right now, according to a new Pew study. Most are responsible for another adult, often their own parent or a spouse.
CHILDREN: 1 out of 5 caregivers takes care of a child with disabilities or health issues, Pew found.
MANY WAYS TO CARE: Countless forms of caregiving include a friend caring for someone with cancer, a church member caring for someone in grief, a work colleague caring for someone who has experienced trauma.

CAREGIVERS: A COMMON SEARCH FOR ANSWERS

While each group presents its own unique challenges, caregivers have similarities. One commonality is that caregivers need assistance. For example: Most caregivers supplement the vital help they receive from medical professionals with their own research online. Pew found that “caregivers make extensive use of the Internet.” We are “voracious” Web readers of helpful information. About 4 of 5 caregivers search for online assistance—and that’s such an important part of their lives that 90 percent of those online caregivers have a high-speed Internet connection available at home.

CAREGIVERS: WHAT DEFINES US?

CLICK THIS IMAGE to read the whole Pew report.

WIKIPEDIA gives this definition: “Caregiver” is the term Americans, Canadians and Chinese use to describe us. People in the UK, Australia and New Zealand prefer to use the word “carer.” Wikipedia says those words “refer to unpaid relatives or friends of a disabled individual who help that individual with his or her activities of daily living.” Wikipedia has much more.

PEW’s July 2012 report gives this definition: “Women are slightly more likely than men to be caring for a loved one, as are adults ages 50-64, compared with other age groups. Caregivers are more likely than other people to report that they themselves are living with a disability, 34% compared with 24%. The call to aid a loved one cuts across all other boundaries: those who work full-time and those who are retired; those who have children at home and those who do not; those who are married and those who are single; those who enjoy a high income and those who do not. All of these groups are equally likely to say they are caring for an adult or a child who needs their help.”

CAREGIVERS: HOW ARE WE THRIVING EACH DAY?

We will talk more about this question in coming weeks. One short answer is: We assist with “activities of daily living” (ADLs)—tasks people need to accomplish each day. From getting dressed or making a sandwich, to paying bills or managing medications—these are all ADLs. Caregivers find themselves performing a myriad of tasks for their loved ones. The simple truth I hope you’ll remember this week is: Whatever you find yourself doing as a caregiver—there are millions of other people doing the same thing today. You’re not alone.

GET INVOLVED: Tell us about yourself. Upload a Godsigns photo through the link at left. Leave a comment by typing in the “Share Your Thoughts” box below. Please, share your own caregiver story. We would love to know more. Who are you caring for? Have I mentioned your group or your daily activities today? How much time are you devoting to caregiving each week? How long have you been doing this? And, when you’re searching online, what’s the most important way we can help you?

KEEP IN TOUCH: Take a moment and click the SUBSCRIBE button at left to get our free Tuesday newsletter so you won’t miss future columns.

Calling all caregivers: Do you know your own talents?

Heather Jose

Welcome back! I’m Heather Jose, your host at WeAreCaregivers. Last week, I introduced myself and two of our other authors: Suzy Farbman and Dr. Benjamin Pratt. This week, I want to share with you some of the wisdom you will find each week at WeAreCaregivers. Here’s the first bit of wisdom: We all need to slow down, if that’s possible in our hectic lives, and take this one step at a time. Today, ReadTheSpirit Editor David Crumm writes about why simply slowing down and getting to know each other is one of the most important things we can do to help the world right now. That’s my advice for caregivers. We can’t hope to do this alone. We need each other.

Next, I’m making a personal appeal today: If you’re among America’s 65 million caregivers—or you know a caregiver—keep in touch with me.

Keep in Touch with Me
Click, then select Caregivers newsletter

CLICK the green button at right and choose the free WeAreCaregivers newsletter. Sign up via email (you can cancel any time). By getting my Tuesday newsletter, you won’t miss a column, a fresh idea, a chance to help others—and you’ll lift your own spirits as well.

Caregiving is not easy. You may have your daily tasks well in hand—but who gets the call when some new need arises? Who is responsible? You. To be at your best you need to meet your own needs on a regular basis. This is a matter of determining what makes you feel good, what renews your spirits. I like coffee from a real mug while sitting in my Adirondack chair and looking at my flowers. I also like how I feel after I have made time to workout. In order to complete the marathon you have undertaken—take care of yourself!

DO YOU KNOW YOUR OWN TALENTS? REMEMBER THESE 3 THINGS

Here’s a piece of wisdom you can print out and stick on your refrigerator or office wall: As caregivers, we often forget our own talents in the midst of all the daily tasks we have to shoulder. Remember that we all have these three talents …

WE ARE EARS. Here’s just one example: At a doctor’s appointment, an extra set of ears is a good idea. Patients are often what I call “hyperhearers,” meaning that we only hear certain statements and fail to retain any other information. There have been many times after a meeting with my oncologist when my husband and I have compared notes and found that we heard very different things. He is more factual; I am more emotional. I would have been missing some crucial pieces of information at times without my extra ears.

WE ARE VOICE. What we say matters. Think about taking your loved one for a medical test at a clinic or a stay at a hospital. These experiences are emotional and often times taxing. While some tests and hospital visits are quick, many of them require multiple steps and hours of waiting, sometimes more than one day. Unfortunately, when it’s time for a medical test, I don’t find the techs to be overly sympathetic to the fact that test results matter to patients. It is nice to have someone to mull over concerns with you. During a hospital visit, days grow very long and spirits sink without a supportive voice.

WE ARE ARMS. As caregivers, we understand that we are arms and legs and strong backs for our loved ones. But stop and think about the many ways our arms help others. Sometimes, our arms become extended arms, showing concern even if our loved ones wind up in a hospital or other care facility. When someone enters a hospital, having a caregiver around as much as possible is a bonus. It need not be the same person all the time. This may be a good time to enlist your entire support network. I have found that the staff’s perception of a patient changes when they can see the patient as a “real person” with friends and relatives around them. Those are your extended arms at work. As a healthcare provider myself, I know that the more I get to know people, the more willing I am to do something extra for them. It’s human nature.

FINALLY, I invite you to print out this column, cut out the reminder box and post it somewhere you’ll see it at least once a day.

Hello, I’m Heather. Let’s talk about caregiving.

Heather Jose photo

Heather Jose

I‘m excited to meet you as we launch our new home page called WeAreCaregivers.com! Bookmark this page and check back regularly. Every week, I plan to bring you helpful tips, practical news for caregivers and a mix of inspirational columns by myself and other writers. Together, we can find common threads in our lives.

That means you are an important part of this effort, too! I’ll tell you about several ways you can share in a moment. But, first, if you don’t want to miss future news and columns, click on the link (at left) to “Sign up for our Email Newsletter.” Don’t worry: It’s free, comes only once a week and you can cancel at any time—so give it a try for a few weeks. When you click on that link, you’ll be invited to receive the WeAreCaregivers newsletter from me via Email and, if you want, the ReadTheSpirit weekly newsletter and the OurValues newsletter, as well. Get them all—or just our new Caregivers newsletter. It’s your choice.

This new WeAreCaregivers.com is more than our group of writers talking to you. The “We” includes you. Every day, you can help other caregivers, right here on this website, by sharing a photo, a tip or a personal note. All of us need this kind of help. Me, too! As I look around me, I see caregiving everywhere! My mom is a caregiver. She provides assistance both to my dad and to her mother as well. I watch as my aunt juggles her job and the demands of her father. I sit in meetings with families who have children with special needs. And for 14 years now, I have seen caregiving from the perspective of a cancer patient.

This a tough job—caring for others. The hours are long and the reward is often little. But there are bright spots too. Tell us your story. Let’s begin this journey by connecting. Who are you caring for? What helps you? Any advice? Here are several ways to share with us right now …

SHOW US YOUR GODSIGNS SNAPSHOT

Cover of GodsignsGot a photo to share? Here’s why we are asking: Suzy Farbman, a popular writer who you might have seen in magazines or on Oprah, has just published a new inspirational memoir about her successful struggle to recover from cancer. “Godsigns” helped to light her way. No, Suzy isn’t writing about big miracles. She’s describing the many little ways that we can find hopeful glimpses of God even in the midst of our toughest struggles. Sometimes these Godsigns are as universal as the wondrous experience of seeing a star-filled night sky, or a beautiful bird landing on your porch, or the smile of a child. Spot a Godsign in your life? Snap a photo and upload it on our front page (at left). Add a line or two describing your snapshot—then check back with us soon. We regularly will post some of these photos at WeAreCaregivers.com to inspire others. It’s easy—and a good thing to do. Those uplifting little Godsigns helped you—now let them help others.

SHARE YOUR TIPS, IDEAS AND NOTES

Got an idea to share? Another writer contributing to WeAreCaregivers.com is the Rev. Dr. Benjamin Pratt, a pastoral counselor and veteran caregiver. He wrote the practical new book, A Guide for Caregivers: Keeping Your Spirit Healthy When Your Caregiver Duties and Responsibilities Are Dragging You Down. You might have enjoyed Ben’s columns elsewhere on the Internet or you might have heard him on the radio or at a conference. He talks and writes about the spiritual challenges of long-term caregiving. Ben’s most important advice is: Don’t do it alone. And, right here, you can start exchanging ideas with others. Whether you’ve read his book or not, you can start sharing ideas online, right now.

DON’T DO IT ALONE: I’VE LEARNED THAT LESSON MYSELF

Together, we can make this new website a place of refuge, information, and above all community. Every week, you will find other men and women who are just like us in the daily challenge of caring for others. At WeAreCaregivers, we’ve done our research: We know that being a caregiver is a common thing. In fact, 1 of 3 people are taking on the role of caregiving in some capacity right now. However, even though this experience is so widespread—very few people talk about it. That is why we are here.

Each week, I’ll be here to welcome you. Remember my name, Heather Jose, along with the WeAreCaregivers.com home page. You can read my entire story in Every Day We Are Killing Cancer. As you’ll learn in that book, I have spent many years surrounded by caregivers and being cared for myself. Fourteen years ago this December I was told to get my affairs in order as an oncologist reviewed the scans that showed the spread of breast cancer. That was a terrible shock for a 20-something mother of a 1-year-old daughter. Cancer was not on my radar until that day! The title of my book comes from a hand-lettered sign that I carried with me through the long, tough journey to recovery.

SET YOUR GOAL TO ‘THRIVING,’ NOT JUST ‘SURVIVING’

Over the years, I have learned many things about the interaction between caregivers, patients and the medical community. As a longtime columnist for Breast Cancer Wellness Magazine, I’m an advocate of describing the goal we set for ourselves as not just “surviving,” but actually “thriving.” And, we can’t hope to thrive, if we’re alone.

Professionally I am trained as an occupational therapist. I have worked primarily in schools and nursing homes. These settings have opened the doors to caregiving in many ways. If you remember and share only one thing from your visit, today, it’s this: Become an active participant in your own health and don’t tackle these challenges alone. That’s the message that runs through everything I write. It’s what I say when I stand before conferences of health-care providers, caregivers and cancer thrivers across the country. It’s the message that saved my life.

So, you’ve heard a little of my story; you’ve met a couple of my friends who will visit with us in future weeks here at WeAreCaregivers.com. Now, it’s your turn. We’d like to meet you. Got a Godsigns snapshot to share? Get started via the Godsigns links on our home page (at left). Got a tip or idea to share? Take a look at the whole list of ways you can share with other Caregivers right now. And, keep in touch: Don’t forget to sign up for the free weekly newsletter.