A story of caregiving told from the heart

I was there for my mom; I know it’s a difficult role

Actor Rob Lowe: We mustn’t overlook the challenge, the pain and the reward

Right now, 40 million Americans are doing truly selfless work as unpaid family caregivers for a loved one. About 25 percent of them are millennials, who often feel forced to choose between their careers and caring for their aging parents and grandparents.

I can relate. When I was in my thirties, my brothers and I cared for our mother throughout her stage 4 breast cancer diagnosis. It’s not a role I was expecting to land, it didn’t come with much preparation, but it turned out to be one of the most rewarding things I’ve ever done — and, undeniably, one of the most difficult.

Caregiving for a loved one is a role that millions more Americans will take on in the coming decades — especially with so many baby boomers saying they want to age in place instead of in retirement homes or care facilities. There are many upsides to being cared for by devoted and well-trained family caregivers, including a reduction in hospital readmissions and a chance for families to bond during a difficult time. But the caregivers themselves often end up paying a high physical and financial cost, which is rarely discussed.

The mental, physical and emotional stress of caregiving has created a vast looming problem for our health care system, yet few caregivers feel comfortable discussing these challenges. So I’ll go first.

When my brothers and I stepped up to be my mother’s caregivers, we did everything we could to support her, from hospitals to hospice care. This often meant trying to figure out and manage her medical paperwork, medication schedules and in-house help, and continually redefining an ever-changing “new normal” for all of us. I often felt overwhelmed.

And many caregivers didn’t have the support I had. A recent study by the National Alliance for Caregiving found that a third of caregivers in America do it alone — and this can lead to a domino effect of health and financial problems for the caregivers themselves.

When you’re caring for a loved one, there’s nothing you won’t do to give them as much comfort and peace of mind as you possibly can. Often, that means you’ll skip your social obligations, wreck your diet, suffer sleep deprivation, even risk your career.

Over time, the stress of caregiving can lead to long-term health problems. A 2017 survey by Embracing Carers found that roughly half of unpaid U.S. caregivers suffer from feelings of depression (49 percent), sleep trouble (57 percent), weight fluctuation (46 percent) and other complications — before money even enters the discussion.

MetLife recently found that caregivers are sacrificing almost $3 trillion a year in lost wages, pensions and Social Security benefits. That doesn’t include the $7,000 on average that every caregiver personally spends each year to provide services. And many caregivers still must use their own personal, vacation and sick time to provide care. It doesn’t have to be this way. EMD Serono and Embracing Carers are dedicated to increasing awareness of the challenges family caregivers face and helping to advocate on their behalf. Working with them, I’ve learned that many caregivers don’t feel supported, don’t know where to turn and often suffer health problems, yet the last thing on their minds is their own well-being.

From my own experience, I can assure you: The person you’re caring for needs you to be at your best. If you don’t take care of yourself, you won’t have the energy or the means to provide the reliable care that your loved ones need. What can you do for yourself? Ask for help.

My brothers and I had each other, but many caregivers — like my stepmother — have no direct help. Luckily, the internet is filled with support groups, forums and other resources where caregivers share advice and provide a shoulder to cry on. Likewise, talk about the challenges with your family, friends and co-workers. That gives them an opportunity to ask questions and find their own way to lend a hand.

Finally, just be present. Caregiving can feel like an overwhelming array of details and responsibilities, prescriptions and pill charts, nonstop schedules and sleepless nights. But time passes, and life does go on. You’ll want to look back and see that you did the most important thing: helping someone you love know they weren’t alone.