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.