I Lived the National Caregiving Trends (Part Two)

In May, the AARP released a report, Caregiving in the United States 2020. It is a comprehensive survey of unpaid caregivers in the U.S. The data was gathered via an online survey of nearly 1,400 caregivers.

In Part One, I addressed the data from the report — and my own experience — regarding providing complex care at home and being a sole caregiver. In this part, I’ll address the emotional and financial impacts on caregivers.

The emotional well-being of caregivers is declining

The report found that caregivers perceived their own well-being as less than in the similar survey AARP conducted in 2015. Only forty-one percent of caregivers rated their own health as excellent or very good, compared to forty-eight percent in 2015. Even more concerning, twenty-one percent rated their health as fair or poor compared to only seventeen percent who said that in 2015.¹

Anyone who has done it, especially for a seriously ill patient can attest to how hard caregiving can be. How brutally hard. My own life was upended, literally overnight, by a metastatic bladder cancer diagnosis. Appointments piled up, as did pills and treatments, faster than we could keep track.

Financial well-being is tough to sustain as a caregiver

Forty-five percent of survey respondents felt some kind of financial impact from caregiving. (Financial impacts included: stopped saving; took on more debt; used up personal short-term savings; left bills unpaid or paid them late; borrowed money from family or friends.) Roughly a third of recipients felt two or more of these impacts as a caregiver.²

Financial challenges tend to snowball

The financial challenges faced by caregivers tend to compound. Even as a spousal caregiver with excellent health insurance for my spouse and myself, the challenges added up. My husband got very sick very quickly. And while I tried to keep working, it just wasn’t possible. He had too many medical appointments. And he was soon taking narcotics to manage pain; this made it difficult to leave him home alone or to consider letting him go to appointments by himself.

I was fortunate that I was able to take a leave of absence from my job. But because I was on leave, my employer would no longer pay the bulk of our health insurance premiums. So, I went from having an income and paying about $300 per month for our insurance to having no income and paying $1200 per month.

An expensive drug wasn’t covered

A drug not typically used for bladder cancer was identified via genomic sequencing as one that might work for my husband. But because it wasn’t approved for bladder cancer, our otherwise excellent insurance denied coverage. The drug cost $10,000 per month. We appealed the denial and eventually won but because we wanted to start the drug ASAP (wouldn’t you?), we paid nearly $20,000 out of pocket (while having no income and paying for the $1200 per month insurance that wouldn’t cover it). I know I am not alone in having many examples of how the financial stressors pile up with a bladder cancer diagnosis.

The AARP Caregiving Report gives us the data around these experiences

I encourage you to read the report. It is rich with data about the status of caregiving in the United States. And it offers strong data to support the idea that we, as a country, need to do a better job of supporting caregivers.