Who comes to mind when you think of caregivers?
When I think about caregivers, I envision a middle-aged woman in scrubs, or some uniform, helping an elderly man or woman. And, of course, that person is paid for supporting them. The next image that comes to mind is still a woman, who is paid, helping an adult who has some type of injury or illness. These women would be considered “paraprofessionals”, meaning they have either a high school diploma or associate's degree and some basic training in daily living skills. But in each scenario, the person is typically a female who is paid for providing a service.
WHY do I think that? That’s simple; I was taught that that’s who caregivers are. This definition of caregivers has been ingrained into our societal beliefs and passed down from generation to generation. As technology and communication have advanced, it’s been reinforced through intentional marketing, reflecting images of women helping frail-looking individuals or persons who are ill. You see it in magazines, online, on television and in movies, everywhere. Even the care industry, including human services, is female-dominated.
It's no wonder that I never thought of myself as a caregiver for my mom, who my sisters and I have been supporting for the last 11 years, or my husband Jason, until AFTER he completed his cancer treatments.
Why would I think of myself as a caregiver? I’m a daughter and a wife. That’s my role, my title. At least, that’s what I believed because that’s what I was told.
Profile of a Family/Unpaid Caregiver
The first step in supporting caregivers is recognizing them. It’s essential to understand who caregivers are and the individuals they support. The numbers may surprise you. They did me!
Caregivers - By the Numbers
The AARP’s 2020 study on caregiving in the US reports that:
53 million Americans provide unpaid care for a family member with health or functional needs, at a minimum.
This represents nearly 21% of all adults.
60% are employed.
The Age of Majority’s study documents that family caregivers are a diverse and complex group who may be defined by different circumstances and experiences that can affect their outlook on caregiving and the need for paid help. The report the profile of a caregiver as the following:
About 50% of caregivers have been providing care for 1-5 years, while nearly 1/5th have been doing so for 10 years or more.
The most common recipients are:
1st – Mother/Stepmother/Mother-in-law
2nd – Spouse/Partner
3rd – Father/Stepfather/Father-in-law
48% live with their care recipient, while nearly 2/3rd who don’t live within walking distance.
25% of caregivers have children at home.
69% of caregivers are Women compared to 39% Men.
Caregiving Can Be Costly – Even Financially
Caregiving can take not only a physical and emotional toll, but it can also have a financial one as well. A new study by AARP on caregiver out-of-pocket costs shows just how much housing and medical expenses can add up — and disproportionately hurt those who can least afford it.
Family Caregivers in the US provide more than 470 billion in unpaid care.
Eight in 10 caregivers report having routine out-of-pocket expenses related to looking after their loved ones.
The typical annual out-of-pocket expenses is significant: $7,242. That amount almost doubles for long-distance caregivers.
On average, family caregivers are spending 26% of their income on caregiving activities.
About half of caregivers say they used their own money for household-related expenses.
Thirty percent covered rent or mortgage payments for their loved ones, while 21% financed home modifications.
Medical costs (paying for health care, therapists, in-home care, or medical equipment) accounted for 17% of caregiver spending.
Only 5% of caregivers reported having no expenses in the past year with their loved one.
Meanwhile, on average, women spend more hours a week caregiving and have lower incomes. The cost of caring for female recipients is higher.
Can you be a Caregiver?
Good news - You’re Qualified! While everyone can be a caregiver; it’s really important to note that not everyone should or is meant to be a caregiver, and that’s okay.
It’s critical that you know yourself and what you can and cannot do. Some people, like my sister Emilie, can live with the care recipient, while others cannot. Regardless of the reason, some caregivers may say, “I cannot help one-on-one”. Again, that’s okay. You can use your skills, or resources, in other ways to help the care recipient. That’s how JJ and I support our mom as a long-distance caregiver myself.
You can also be a caregiver to the caregiver! Supporting a caregiver is equally as important as it reduces stress on them, allowing the caregiver to provide the best support to the care recipient, but also offers a break. Some examples of support include picking up groceries, running errands, coordinating medical appointments, or simply offering an ear to listen.
Where do Caregivers Live?
Caregivers can live anywhere! Here’s a list of most common living situations.
Live-in Caregivers – live with the care recipient
Local Caregivers – live within 100 miles
Long-Distance Caregivers – live farther than 100 miles
Who We Care For – Care Recipients
So, there are a lot of us who “qualify” under the definition of unpaid caregivers, including my sisters and me. Do you?
Below is a list of the types of care recipients.
Child/Adult with Disabilities
You are a caregiver.
You are not alone.
Caregiving is emotionally, physically, and financially draining. We know, we’ve experience it too.
We Want to Help
Caregiving is hard. No, REALLY HARD. We’re here to say, “You’re not alone. We’re here to help!” That’s why we created the Confessions of a Reluctant Caregiver podcast and supplemental resources!
Through storytelling, guest interviews, and information sharing, JJ, Emilie, and I and our guests discuss our shared experiences. We believe viewers and listeners alike will relate to our reluctance, be affirmed in their ability to be a caregiver and gain the courage to step out of the shadows to express their needs confidently.
Using our past experiences professionally, combined with our caregiving experiences and a good bit of humor, we strive to meet our listeners where they are. We discuss the good, the bad and the ugly of caregiving. We strive to engage caregivers, and those who support them, via the Confessions podcast, blog posts, website, social media, newsletters, emails blasts, training, and speaking engagements.
We aim to instill hope and build confidence by permitting caregivers to express their innermost thoughts and feelings outwardly. Empowered caregivers will be their most authentic selves, courageously confessing their truths without shame or fear of rejection, ultimately living a healthier life.
Roslyn Carter sums it up best:
“There are only four kinds of people in this world.
Those who are caregivers,
Those who have been caregivers,
Those who will be caregivers, and
Those who will need caregivers,
And that’s everyone in the world.”
The more you know, the more you can prepare yourself for your caregiver journey. Whether you HAVE BEEN a caregiver, ARE a caregiver, or WILL be a caregiver, you are not alone. You will always be part of the sisterhood of care.