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.


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.


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.


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.”


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!


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.