No. 1 Reason Why the CDC Should Track Family Caregiver Stress: We Deserve It


No. 1 Reason Why the CDC Should Track Family Caregiver Stress: We Deserve It

heavy-934552_640At the end of July, Howard Gleckman, a columnist for Forbes, wrote about the policies some states have implemented to help family caregivers. (Read: We Need to Do a Better Job Caring for Family Caregivers.)

I meant to write about Mr. Gleckman's article, published at the end of July, but I was too stressed trying to help and care for my parents. Since July, my parents' collectively have had three hospitalizations, one short-term stay in a nursing home, one respite stay in an assisted living facility, one major surgery, an outpatient procedure to remove skin cancer on the head and neck, one midnight fall, one afternoon of chest pains, numerous doctors' appointments and countless procedures to find and stop internal bleeding. And, this is after my dad's March surgery to remove his bladder, left kidney and prostate because of cancer and his May hospitalization to remove a blood clot in his carotid artery.

I've been entrenched in the health care system. I've been at the hospital at 7 a.m., 7 p.m. and 2 a.m. I've interacted with countless specialists, doctors, nurses, discharge planners and social workers.

I've been a consistent presence and voice as my parents receive treatment options, updates and care plans. And, yet, no one--not one of those health care professionals--ever asked how I was managing. Not my dad's primary care doctor who nodded to me as we discussed my dad's health in the doctor's office and my dad's hospital room. Not any of the specialists, residents and nurses who witnessed my vigil in my mom's hospital room. Not my mom's primary care doctor who answered my questions about how to get the best care for my mom and explained her treatments and procedures. (Note: I switched my mom to another doctor because this primary care doctor would not remove my mom's leaking and infected feeding tube which they could not use because, well, it leaked and caused an infection.)

Mr. Gleckman wrote about programs some states have implemented to help family caregivers like:

  • The Caregiver Advise, Record, Enable (CARE) Act, implemented by 13 states, that requires hospitals to take three steps for all patients: If a patient agrees, designate a caregiver at admission; notify her before the patient is discharged; and describe the tasks she will need to perform at home and provide instruction in how to do it.

  • A formal assessment of family caregivers in 15 states for Medicaid recipients who receive long-term supports and services at home.

To me, these program miss the mark.

I've received training on ostomy care for my dad before his discharge from the hospital after his March surgery. It's different when you get home! I even taped the hospital training with my iPad. What happened at the hospital when the ostomy nurse changed my dad's ostomy bag was completely different for us at home. We figured out and we adjusted but not until after my dad spent one night sitting up in his recliner all night because we couldn't figure out if his bag was really leaking and if it needed to be changed.* Looking back, with months of experience behind us, we now know exactly what to do. During his first week at home, we had no idea because we were tired and nervous and emotional and worried. We're smart but the emotions and the fatigue paralyze.

I love that family caregivers of carees with Medicaid benefits will be assessed. But, what about the rest of us?

It's foolish to have state-specific programs. It's short-sighted to have programs which only help a percentage of family caregivers. How will we gain a better understanding of what family caregivers experience (and endure) with states implementing their own programs? How will we have data that represents the national experience when the data only represents a percentage of the millions of individuals who provide care to a family member or friend?

We need a national initiative that tracks family caregiver stress and its source so we can create and fund programs which really and truly help family caregivers.

Now, more than ever, I believe we need the Centers for Disease Control and Prevention to track family caregiver stress and its source.

Join me in signing our petition to have the CDC track family caregiver stress. Family caregiver stress is the true epidemic in our communities. And, we deserve solutions and support that make our days easier.

How You Can Help

  • Haven’t signed our petition yet? Add your signature asking the CDC to track family caregiver stress and its cause.

  • I emailed Dr. Tom Frieden, Director, Centers for Disease Control and Prevention, and sent tweets; I will continue. You also can send an email to Dr. Frieden. You also can tweet him (@drfriedencdc) and the CDC (@cdcgov).

  • Let’s ramp up our pressure to make this happen. Join me for a special chat on Twitter on Friday, October 16, at 1 p.m. ET (Noon CT, 10 a.m. PT). During our hour-long chat, we’ll talk about family caregiver stress and ask the CDC to track our stress. To join our chat, go to, log into your Twitter account and follow our hashtag: #trackstress.

* The hospital ostomy nurse trained us on a system which didn't work for us at home. Our visiting nurse, which we received upon my dad's return to home, changed us to a much better system. She also took my evening phone call when we couldn't figure out if my dad's bag was leaking and arrived early the next morning to help us. Every family caregiver needs visits from a visiting nurse after a hospitalization.

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Hi--Totally agree we don't need more research. We do need to position and treat family caregiver stress as the epidemic it is. Who tracks epidemics? The CDC. We need data (which differs from research) to get funding to give help. When the data proves what we know--family caregiver stress is an epidemic--we'll get true help. The CDC isn't about politics or self interest. It's truly about saving lives. And that's what we need.