After my dad’s bladder cancer diagnosis in March 2004, I regularly attended doctor’s appointments with my parents and provided emotional support to them. My dad received ongoing treatment, which he managed, for his cancer.
Because I made attending his appointments a priority, I also advocated on behalf of my dad, especially during one particular appointment with his primary care physician to review scans of ever-present nodules on my dad’s lungs. The doctor looked at the results and said, “This looks like cancer. I’m going to refer you to an oncologist.”
My dad’s head dropped and he slumped on the exam table. Because I had been a regular presence during my dad’s doctor’s appointments, I said to the doctor:
“He’s had these nodules for a while and they’ve always been benign. What changed that you think there’s cancer?”
The doctor flipped through pages and pages of my dad’s medical record. He compared two pages and then said, “Oh, I’m sorry. There’s no difference. There’s no indication of change which means there’s no cancer.”
That kind of caregiving continued for about 11 years. I advocated for my dad, stayed present for my parents, communicated with my siblings, participated in decisions around treatments and second opinions, managed worries and uncertainty, planned with my parents for next steps, provided emotional support and technology support while I sustained my own quality of life with regular exercise and healthy meals.
My caregiving intensified in the fall of 2014 when scans indicated his cancer had spread. In March 2015 he had surgery to remove his bladder, a kidney, and prostate. After that surgery, I provided his ostomy care plus managed and communicated with his care team. Over the years, I added on responsibilities for managing his wound care and skin care treatments as well as assessing his safety and well-being. I also managed the crisis, like when he had a stroke, thought he was having a heart attack, and fell. (Oh, the falls!) I also continued to do that work I had been doing since 2004.
When I think of my experience through the Six Caregiving Stages™ concept, I was a Freshman Caregiver for just about 11 years before becoming an Entrenched Caregiver.
My earliest work as a family caregiver started in 2004.
We Need to Stop the Wait for Support
Currently, though, we define caregiving by the hands-on care tasks we do. By that standard, I only would have met the definition of a family caregiver in March 2015. Even then, Medicare didn’t cover caregiver training for me. That benefit didn’t exist until 2024, and even now, it only covers training in hands-on tasks and behavior management, tied to a practitioner’s treatment plan. Our earliest work (advocating, communicating, providing emotional support) doesn’t trigger coverage for that benefit. We’re working to change that.
My experience isn’t unique. We often miss the early years of a caregiving experience, which means we miss a really crucial window when we can add in support and resources. In the early years, we may not be providing hands-on care, but our work is significant.
Our data from our Non-Reimbursed Family Caregiver Savings Calculator indicates the work we do as a family caregiver starts with responsibilities within more than seven of the Nine Caregiving Domains™. We’re not providing personal care yet, which most researchers use as a trigger that defines us as a family caregiver, but we’re interacting within the 19 Caregiving Systems™. We’re doing work in the Providing domain, like providing emotional support. We’re just not doing the work that typically labels us as a family caregiver.
Within most definitions used by researchers and caregiving organizations, we’re overlooked until we begin providing care.
In my case, then, the work I did as a family caregiver began in 2004, but I might not have counted as a family caregiver until 2015. Honestly, I had to work through whether or not I really was a family caregiver during that decade. Was I really doing enough work to “qualify” as a family caregiver?
That’s a problem. If I wondered whether or not I worked hard enough to receive support and help, then I can’t imagine how many others doing what I did for a decade decide they aren’t doing enough to receive help and support.
We need to define family caregivers as an emotional experience, because providing emotional support begins as soon as caregiving starts. As family caregivers, the caree relies on us for emotional support. Family caregivers deserve to rely on their own effective emotional support.
We can’t have family caregivers wait a decade for support. We need to connect to support early, before it’s hard, so it’s there for us when it gets hard. The best day to build our support is on our best day so we have it on our worst day.
Our formal definitions of a family caregiver mean too many family caregivers wait. Too many family caregivers question whether their situation is hard enough to warrant support. We need to stop the waiting. We need to be the answer with real support.
That’s why we built the Non-Reimbursed Family Caregiver Savings Calculator: to prove, with data, that my decade wasn’t unusual. We now have more than 500 responses from family caregivers who calculated their value, and their numbers tell the same story mine does.
What’s the value of a family caregiver’s work?
We asked family caregivers to calculate their number by defining the scope of their work. With this data, we can form the foundation for the argument that family caregivers need to be reimbursed. Family caregivers do the work of systems, and yet remain the only system without a reimbursement rate. Our calculator is more than a form to complete; it’s an insight into the value family caregivers deliver every day. Here’s what 509 family caregivers have told us so far.
The Numbers So Far
509 family caregivers have calculated their number
$1.04 billion in documented, non-reimbursed lifetime value
$167,176 average non-reimbursed value, per family caregiver, per year
Focused on the Few, Missing the Many
Researchers commonly define a caregiving role by the personal care provided. Our data shows that definition misses the largest number of family caregivers. Family caregivers overwhelmingly provide emotional support: 84.5%, compared with 57.8% for personal care like bathing and dressing.
Caregiving Begins With Multiple Responsibilities
The scope of the role doesn’t build up over time. It begins from year one.
By their first or second year, family caregivers already operate across 8.2 of the Nine Caregiving Domains™, statistically the same breadth as family caregivers years into the role. Rather than the number of domains a family caregiver manages, hours, care types, and non-reimbursed value grow with experience. The role doesn’t widen gradually. It starts wide and then deepens.
Within that first year or two, the single most-selected responsibility is emotional support, at 88.9%, even higher than the 84.5% rate across all family caregivers. New family caregivers don’t ease into the emotional weight of the role. They carry more of it than most, from day one.
The next most-selected responsibilities at year one and two are just as telling: updating providers & family members and managing worries & uncertainty, both at 84.1%. Because family caregivers are doing relational and administrative work, they need support developing coping strategies for the emotional load. They need help getting oriented to systems full of providers, processes, records, and qualifying criteria for benefits.
There’s More Behind the Number
Which single responsibility tops each of the Nine Caregiving Domains™? Why “83% of family caregivers select each domain” and “78% select all nine at once” are two different, equally true findings. Read the full comparison between family caregivers at year 1–2 and family caregivers years into the role.
Data drawn from the Non-Reimbursed Family Caregiver Savings Calculator, live since May 10, 2026, deduplicated by session token (last entry retained per family caregiver).
My first few years of caregiver with my Dad were the same. I was mainly emotional support and attending doctor appointments with him and my stepmother. I distinctly remember often questioning whether I actually‘qualified’ to be called acaregiver during that time.
It wasn’t until his final couple of years of life, as he got sicker, when my stepmom was constantly calling me. Reporting on every situation every behavior , every thing he did. At times I had to leave work or drop everything I was doing and drive to their house to ‘mediate’ and calm folks down. I was more entrenched the last couple of years. With my mom, present day, I am all she has. I am most assuredly a caretaker from day one as there is no one else.