Perspective | I just got a taste of our nation’s caregiver crisis. We’re in trouble. (2024)

The purplish line of surgical ink slashed across his shin, just below the knee sticking out of his hospital gown.

“They want to take that much?” I asked, utterly failing to mask the horror on my face as I imagined his foot, his ankle and that much leg gone. And what life — our lives — would be like.

“Well, yeah, it makes the most sense, for recovery,” my husband said. “The doc said prosthetics are really good now.”

Prosthetics? Whoa, whoa, whoa. What’s going on here?

The previous week, my husband was complaining about a foot injury that wouldn’t heal — a blister that turned into an open wound that turned into streaking red up his leg, plus shaking chills.

That was just more than a month ago. And in that month, we’ve had the tiniest glimpse into a world that tens of millions of Americans inhabit daily as caregivers to another adult.

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It’s brutal, frustrating, inspiring, conflicting and heartbreaking.

I became a regular reader of the amputee subreddit, where folks talk about adapting sewing machine foot pedals and accordion keys for life with fewer digits and limbs.

I spent hours researching the medications, the wound care, the diabetes that exacerbated the whole thing.

And because I’ve interviewed so many of them, I returned to the stories of military spouses, mostly women, who somehow survive the role reversals, grief, love, despair and exhaustion that is part of their new lives, and still find time to inspire and share with others.

“The exhaustion cannot be put in words,” said Candace Laguna, 43, a mother of four who also cares for her veteran husband, who has had 20 surgeries and is getting ready for four more here at Walter Reed National Military Medical Center in the D.C. area. “Because regular life goes on too. You know, moms have kids and things besides their spouses.”

I do not even dare to compare our one-month glimpse into the medical and caregiving world to anything these families went through. No way.

But I loved talking to Laguna about the complexities of caring for men who aren’t really great at being cared for. Frank Laguna, 48, was known as “Frank the Tank” and pushed through injuries in Iraq that multiplied in later military service.

But just one small experience is huge for perspective and understanding the massive crisis America is facing when it comes to caregiving.

Laguna had to cut her career in biotech short and leave a lucrative job opportunity to stay home and care for The Tank. They’re living in transitional housing and have an opportunity to get a custom home built through a veteran program, but they can’t afford the land in Maryland for the build.

Women like her do an estimated $1 trillion in unpaid care work in America.

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That’s according to last month’s analysis of the Bureau of Labor Statistics’ American Time Use Survey by the National Partnership for Women & Families, which found the majority of family caregiving, whether it’s child care, elder care or care for an adult with medical needs, is still done by women.

“Time spent providing care is time spent working, and America’s caregivers make critical contributions to our communities and our economy. That is why we will continue our push to ensure every person receives the essential supports and protections — including paid family leave — that they need to thrive,” said Jocelyn C. Frye, president of the National Partnership for Women & Families.

Laguna said caring for caregivers isn’t only about financial compensation.

“We're not always looking for the next legislation that will give us more money or more things, but legislation that is more about humanity,” she said. “In the workforce, you have the Family Medical Leave Act, yes, but it’s not always a friendly legislation. It takes a lot of fight, sometimes to maintain it or to even get it processed through HR.”

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Caregiving isn’t necessarily ingrained in America’s work-obsessed culture.

And that’s a looming disaster as the “silver tsunami,” the tide of aging Americans, bears down on an infrastructure and culture that simply can’t accommodate it.

Indeed, a lot of employers have no idea what’s going on in the lives of their employees who are caregivers, according to a 2019 study at Harvard Business School by professor Joseph B. Fuller and program director Manjari Raman.

Only 24 percent of the employers in the study said that caregiving influenced workers’ performance. Meanwhile, 80 percent of employees with caregiving responsibilities conceded that caregiving affected their productivity.

Hello? Bosses?

The same study found that 32 percent of employees had to leave a job because of caregiver duties.

“We’re trapped within a caregiving crisis, within an economic crisis, within a health-care crisis,” Joe Biden said in a speech in 2020, back when a presidential campaign addressed caregiving outside of the West Wing.

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“We have a national care crisis and we’re talking about golf,” Jason Resendez, president and CEO of the National Alliance for Caregiving, wrote on X during that mess of a presidential debate almost two weeks ago, when the candidates sniped at each other over golf scores.

Resendez is out there telling our leaders that we are a nation of caregivers — at least 50 million of us are the backbone of the U.S. health-care system — and something needs to change.

I was lucky to have a huge bank of sick leave and a boss who didn’t hesitate to tell me to take the time off when I wondered if I should try to balance my husband’s temporary medical care with the column.

But we’re only a month in. For many folks, this is a reality for decades.

And so far, husband remains a biped.

“It’s looking good, but you’re not out of the woods yet,” his surgeon told him during a follow-up visit last week.

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An expert in diabetic wound care looked at his wound and studied the MRI that showed infection spread to his bones right after that purple amputation line was drawn. But he believed it was worth trying to save the foot.

So there were two surgeries, 11 days in the hospital and an ongoing home regimen that has so far involved a wound pump attached to his foot, four daily IV infusions of antibiotics, redressing the wound, rushes back to the hospital after he accidentally snagged his IV line, his pump stopped working and he had a terrifying, exorcist-like reaction to one medication. This plus up to three or four drives every week for appointments back at the hospital, and one visit from an in-home nurse every week. And NO WALKING.

“Stay off your foot! I’ll get it for you,” I just yelled, while writing this, hearing him scrambling to get (more) coffee.

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I never imagined I’d be able to run an IV and wash a raw foot bone before breakfast, but this is marriage. And it’s our entry into a world that millions of others occupy.

We started this journey caring for my father-in-law in our home part of last year and thought of putting his wheelchair, three canes (he kept losing them) and walker up on Craigslist because he moved back to California. Never mind.

We’ve now added a knee scooter, crutches and an IV pole to this sexy collection.

More importantly, we’ve gained a deeper humility and appreciation for what millions of Americans are living through each day in silence.

They need to be heard.

Perspective | I just got a taste of our nation’s caregiver crisis. We’re in trouble. (2024)

FAQs

When should you stop being a caregiver? ›

Signs it's Time to Stop Caregiving

Irritability/frustration after something small. Avoiding the loved one. Physical fatigue. Restlessness.

How does caregiving affect marriage? ›

Cutting into the time you have for family matters, such as childcare and housework. Causing frustration and fatigue. Causing resentment of the loved one in need. Creating tension or conflict between your spouse and other family members involved in your partner's care.

How do you handle difficult situations related to caregiving? ›

10 Tips to Manage Emotionally Challenging Caregiving Situations
  1. 1) Agree on a strategy and a plan before you act. ...
  2. 2) Monitor your feelings. ...
  3. 3) Recognize that your loved one may feel trapped by needing care. ...
  4. 4) Acknowledge negative feelings. ...
  5. 5) Understand that there are no perfect families.

Why is being a caregiver so hard? ›

Being a caregiver requires endless amounts of energy, empathy and patience. Caregiving is a time-consuming undertaking that can easily lead to burnout. If you're caring for a loved one, it's important to be aware of the challenges caregivers face, so that you're able to address them if you need to.

When should you walk away from caregiving? ›

Signs such as avoiding the loved one, anger, fatigue, depression, impaired sleep, poor health, irritability or that terrible sense that there is “no light at the end of the tunnel” are warnings that the caregiver needs time off and support with caregiving responsibilities.

What is caretaker stress syndrome? ›

What is Caregiver Stress Syndrome? Caregiver stress syndrome is a condition characterized by physical, mental and emotional exhaustion. It typically results from a person neglecting their own physical and emotional health because they are focused on caring for an ill, injured or disabled loved one.

What is the hardest part of a caregiver? ›

Dealing with Emotional Stress and Burnout

Emotional stress and burnout are significant challenges faced by caregivers. The demands of caregiving, coupled with balancing work, personal relationships, and other aspects of life, can lead to increased stress and feelings of being overwhelmed.

What does caregiver burnout look like? ›

Caregivers who are "burned out" may have fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.

Why am I so angry as a caregiver? ›

Social isolation, which many family caregivers experience as they spend more time with the person they're supporting, can also fuel anger. Other times, resentment can start to bubble up—when you're around people who don't have to care for a parent or when time is taken away from your own kids or needs.

Do caregivers age faster? ›

A new study by Ohio State University in conjunction with the National Institute on Aging has shown that adult children caring for their parents, as well as parents caring for chronically ill children, may have their life span shortened by four to eight years.

Can you get PTSD from being a caregiver? ›

PTSD (post-traumatic stress disorder) can occur after any traumatic event or experience. It may surprise you to discover that providing care for a loved one is one of the main causes of PTSD. Yet, the condition often goes undetected, and thus untreated, as many people aren't aware that caregiving can lead to PTSD.

When caregiving gets to be too much? ›

Caregiver burnout is a state of physical, emotional and mental exhaustion that can happen when you dedicate time and energy to manage the health and safety of someone else. Caregivers who experience burnout may feel tired, stressed, withdrawn, anxious and depressed.

What is the average length of caregiving? ›

Months and Years Providing Care

The average duration of a caregiver's role is 4 years. Only 30% of caregivers provide care for less than a year. 24% of caregivers provide care for more than 5 years.

References

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