Every single one of us — because we are alive and we are human — runs the risk that at some point in our lives something will happen to us, making it impossible for us to take care of ourselves.
This something can be any one in a long list of disabling events. A car accident, or a serious disease like multiple sclerosis, Parkinson’s or Alzheimer’s disease, or a developmental disability like cerebral palsy. Or it can just be the result of aging cells when we get old.
What is equally, if not more likely, is that someone in our family — a grandparent, a parent, a sibling, child or spouse — will be among the 10 to 12 million people at any point in time who need help. As a result, we’ll likely be drafted into service, joining the 40 million Americans who are currently serving in the role of family caregiver.
In and of itself, this is not a problem. Almost every family caregiver will tell you that there is joy and satisfaction in this role. That taking care of someone you love, especially someone who once took care of you — this is a privilege.
But it’s still very hard. It requires sacrifice and commitment and it can be heartbreaking. But even that’s ok. As the writer and activist Glennon Doyle Melton says, “We CAN do hard things.”
The problem is when we are doing hard things alone. When the hard work is unsupported by community, business and government; when the caregiving that others are doing is so invisible that you never see it coming when it happens to you.
So then, this job becomes much harder than it needs to be, than it should be. It becomes overwhelming, dishing up one unexpected challenge after another.
Here are five challenges that might surprise you if you find yourself in this role.
Table of Contents
How Physically Demanding The Work Is
Imagine that your 200-pound father, brother or husband needs help getting out of bed. If the only thing standing between him and his institutionalization is you getting him out of bed every morning, you’ll throw your back out many times before you give up.
Bathing. Feeding. Transferring from bed to chair to toilet. These are the things that caregivers do for loved ones every day, often putting their own physical well-being at risk. According to AARP, a third of family caregivers say their own health is fair to poor. Many more say they are overwhelmed and exhausted.
How Expensive It Is
Caregivers often don’t get the help they need. And, that’s because getting outside help is expensive, hard to find and hard to arrange.
For example, say you hire someone from a home care agency to help with cooking, laundry, transportation or personal hygiene. The average amount you’ll pay will be around $20 per hour. If that person is helping out three days a week, four to six hours per day, your weekly costs will be $240 — $360 per week!
So often people who require care are already out of money or had limited finances to start. This means that, in addition to providing an average of 18 hours of care every week, family caregivers shell out their own funds to pay professional in-home caregivers, or even to pay for assisted living facility care.
How Utterly Screwed Up the Health Care System Is
The traumatic scene that family caregivers so often recount is the one where they are standing in the hospital trying to advocate for their loved one in a health care system that is largely impervious to the real goals, wishes and safety of patients.
Most healthcare professionals — doctors, hospitals, insurance companies, nursing homes, and assisted and independent living facilities — have an extremely narrow view of their responsibilities. This view often doesn’t take into account the complexity of needs that often accompany old age or disability and that require providers to coordinate across the many different sites of care an older adult might visit.
So the family caregiver is left with the job of advocating for the dignity and safety of their loved one, on top of managing and coordinating across multiple healthcare providers.
You Are Expected to Do Things For Which You Have No Training
Caregivers are often left performing professional duties without the requisite skills. If a boss gave you a job you weren’t qualified to perform without with any support and then told you your family’s well-being depended on you succeeding, we’d say you were set up to fail. You’d certainly be set up for an ulcer.
Family caregivers’ jobs can include administering medications, intravenous fluids or injections. They have to grapple with complicated insurance rules and legal and financial responsibilities. As a friend said to me, “I can’t believe I’m managing all of this!”
They have to decide — along with their parents and siblings who controls money, who makes health care decisions, and what the health care decisions will be.
In short, they need an RN, an MBA, and social work and law degrees to perform this job.
How Invisible And Unsupported It Is
And, finally, family members providing this care often do it invisibly — their community and friends unaware of what they’re doing every day, wondering why they can’t participate in social and community events.
What resonates with caregivers is the need to be seen for what they do, to have their caregiver identity validated and honored by society. But this so rarely happens.
With so many families in the same situation, it’s surprising that caregivers experience such isolation.
What can we do to alleviate these huge challenges that caregivers face?
There’s no question that family caregivers prop up our health and long-term care systems. The value of the care they provide would be hard to replace through higher spending on government programs like Medicare and Medicaid. So it’s important that we find a way to value their contribution.
And, yet, they receive too little support and recognition from government and business. This needs to stop and a national dialogue needs to start — a conversation about how to organize our systems and communities to ensure we’re well prepared to care for the growing older adult population.
This is an essential conversation and we need leadership like this to make sure we stay focused on solutions. The only way this country will be able to care for the growing population of older adults is if we work together to create systems and communities that support the work that family members do best: taking care of each other.