According to AARP, in 2017*, 41 million caregivers provided over 30 billion hours of care valued at over $470 billion. Though the number of caregivers supporting loved ones annually in the United States and the amount of care they provide is so significant, they are what I call the invisible population. Sadly, this invisibility doesn’t show up in just one way. Within the healthcare system, caregivers often find themselves shut out.
In spite of massive gaps in care services that we fill totaling in the high billions, few to no resources are provided to caregivers. Why? Because we don’t fall under a billable code – until, of course, the toll of caregiver leads to becoming a patient. We are often relegated to a seat in the corner instead of being included as part of the patient’s team. Most of us have more influence with the patient than any healthcare professional, have the most at stake next to the patient, yet we are not given tools to better support our loved ones. We can also run into challenges with regard to access to information and medical changes.
Caregivers become experts in many things. We wear many different hats including researcher, appointment coordinator, test results tracker, patient navigator, insurance warrior, nutritionist, communications point person, and more. We take over our loved ones daily chores when they are unable, juggle full-time jobs, and parenting. We do it with love and out of love. But that doesn’t mean we don’t eventually run out of physical and emotional energy. It doesn’t mean we don’t need a break, time to recharge, a few moments to process our own sadness, fear, and grief over the impact of our loved one’s illness on us.
Then there are the ways we treat ourselves as invisible. It is rare to find a caregiver who doesn’t consistently put their loved one first – over and over. Time, energy, financial resources, emotional support – it all goes to the patient. Even when we do find a little time or extra money to take care of ourselves, the opportunity can be tainted with guilt.
But we are headed into a caregiving crisis – and while the diversity of caregivers is growing, a disproportionate number of personal caregivers are women, many of whom also work outside of the home. To continue to show up and support those we care for, we must invest more in our own self-care.
And if this country is looking to create a financially stable future, we are going to need to invest in the wellbeing of caregivers. The implications and impact of even one-third becoming patients due to the physical and emotional toll are massive. #timeforchange
*This blog post has been updated with more current statistics.  https://press.aarp.org/2019-11-14-Valuing-the-Invaluable-Series