In reality, the act of caregiving requires those involved to wear many different hats, leveraging different skill sets, and sometimes adopting different personas to facilitate communication.
Hats, skill sets, and persona associated with caregiving, from my perspective, are medical in nature. Navigating the health and medical system alongside a loved one is only one element of caregiving.
You are a caregiver if you provide any type of physical, financial, social, or emotional support to an individual. Let’s go further to include those individuals who support and enable caregivers by helping them adjust their lives and schedules so that they can be available to aid a loved one.
But that’s only a definition, what does it really mean to be a caregiver? Surely, one aspect of the definition is more valuable than another, right?
A nurse-type persona generally fills this role, making sure medications are managed, meals are healthy, blankets are tucked in. My father didn’t need any help managing himself physically, but he did need my help painting the barn. “I’m getting old” he’d say as a way of asking for help with something he’d easily been able to do in his pre-cancer days.
Being physically available to support a loved one is sometimes all that an individual can offer as they have more time to give than other types of resources. Sometimes, by nature of proximity to their care recipient, individuals find themselves offering more physical support than others in the Care Circle. Either way, for those who cannot physically be an in-person caregiver, those who can are invaluable.
Caregivers who assume financial responsibilities often write checks and pay bills, but also may offer monetary support to offset the expenses associated with age or illness. Growing old and being unwell is expensive.
The National Council on Aging, reporting on the latest data from the US Census Bureau, says that “More than 17 million Americans age 65+ are economically insecure—living at or below 200% of the federal poverty level (FPL) ($29,160 per year for a single person in 2023).” The Joint Center for Housing Studies of Harvard University found similarly distressing figures in their 2023 Housing America’s Older Adults report. Research in the report showed that “in 2021, nearly 11.2 million older adults were cost burdened, meaning they spent more than 30 percent of household income on housing costs.” This represented “an all-time high and a significant increase from the 9.7 million recorded in 2016.” Millions of US citizens aged 65 or older and living independently currently have incomes below the Elder Index.
In short, it is a big problem.
Financial caregivers often have the uncomfortable role of talking to their loved ones about monetary resources, taking over responsibility for finances, and finding themselves trying to manage care providers and other hired support. No one would argue the pressure of this role, but it may be met by a level of resentment from those who are physical or emotional caregivers and feel that a financial caregiver isn't truly engaged.
Often overlooked or taken for granted, these caregivers frequently remain invisible. Perhaps my own personal remorse is visible. I hadn’t recognized just how much emotional support my husband provided our children and me while I was focused on losing my dad. In the years since his passing, while helping my mom with her computer, we discovered incredibly meaningful communication between my husband and my father. How could I not have known of this special gift? When I write that caregivers include those supporting caregivers, I do so with my hat in hand, humbled I didn’t see support at the time.
Emotional caregiver was my role, focused on collecting family stories, understanding the family tree, making sure that my father knew his life had meaning and would be remembered. Later, my brother acknowledged I was able to fill this role because of the special father-daughter relationship he witnessed.
The Caregiven app encourages every caregiver to have these conversations and record them along with family stories so all are easily shareable among Care Circles.
Showing up, checking-in, sending notes, and encouraging loved ones to make the most of every day is all part of social caregiver engagement. Perhaps this group includes a neighbor, a friend from the old days, or even a familiar hat you wear which inspires story telling. Socially oriented supporters are adept at keeping a Care Circle as well as updating a family and friends network.
There were things my father wanted others to be aware of, and many things that he did not; I was able to be that voice. Times varied as to when he wanted visitors and when he just needed to be alone with his thoughts; I was able to be that gatekeeper, often without him knowing. I enveloped many things he shared with me during our conversations and used that information to better his end-of-life journey, including calling his hospice nurse before visits to inform her what to anticipate.
As those giving care recognize, daily expectations are unknown. By separating out different roles from the singular label, I hope to have expanded your perspective on the many layers that define a caregiver.
There is a need and a role for everyone in any care journey. Perhaps by distinguishing opportunities, we leave more room for others to participate and find ourselves with fewer hats to wear.
We're in this together...