The Flu Is Once In Awhile; The Stress Is All the Time

Denise

The Flu Is Once In Awhile; The Stress Is All the Time

Denise
credit-squeeze-522549_640In December, when my 83-year-old dad registered at the front desk to see his new doctor for his old cancer which won't go away, the receptionist gathered his insurance information and date of birth. Then she asked if my dad had traveled out of the country within the past 90 days and had any chance of contracting Ebola.

When my dad checked into the hospital a month later to have his cancerous growth removed, the receptionist confirmed his insurance information, date of birth and address. And this second receptionist also asked my dad if he had traveled out the country within the past 90 days and had any chance of contracting Ebola.

Each time when asked about traveling out of the country or contracting Ebola, my dad answered, "No." I know about these questions and his answer because I attend these appointments and procedures with my dad. I'm standing right next to him. With support and help from my siblings, I take care of my dad. I am his family caregiver.

We have a great system in place to track potential epidemics in order to prevent and contain them. How well we track the flu epidemic amazes me every time a television newscaster shows me a graph that details the areas in our country with an outbreak.

So, let's do what we do well—track epidemics—to track an epidemic already ablaze in our communities: Family caregiver stress.

We think that health care happens in the health care system. It actually happens in the family. Consider:

  • 5,723: Total number of hospitals (2012 American Hospital Association Annual Survey

  • 920,829: Total number of hospital beds (2012 American Hospital Association Annual Survey

  • 834,769: Total number of physicians (2012, The Henry J. Kaiser Family Foundation

  • 65.7 million: Total number of individuals who care for a family member or friend (National Alliance for Caregiving, 2009)


And, yet we have no national program which helps these family caregivers, who deal with the incredible stress of managing a family member's intense care needs. The health care system provides once-in-awhile care. Family members provide all-the-time care, day in and day out. Every day is Monday during a caregiving experience. When you care for a family member, you can take time away but you can't get a break from worry. For many, a caregiving situation lasts decades as we fine-tune treatments which lengthen the time we live with chronic illnesses. The treatments keep us going but our family caregivers keep us alive.

Year after year of that stress and worry takes a toll. Pegi, who cares for her husband, succinctly describes caregiving stress in four words: Constant state of alert. A family member with a chronic, unstable illness (or, more often, illnesses) could experience a health crisis at any moment. When he does, the family caregiver assesses the situation, puts in place solutions which hopefully may help, makes the call about whether or not to contact the doctor, and decides if a trip to the emergency room is needed. Consider living with that stress, the pressure of deciding how to manage the significant care needs of a family member when you've never been trained to actually provide that care. Think about waiting for a doctor to return a call when you're standing in front of a situation that feels like life and death right there in your living room.

Even if 10% of family caregivers feel stressed, we have almost 7 million individuals overwhelmed with worry and uncertainty and anxiety. That's a health crisis.

As we track this epidemic, let's also keep data about the cause of the stress. Family caregivers face financial pressure, perhaps dealing with loss of an income in order to provide care or trying to manage the overwhelming medical bills that care requires. Or, more often, both. The lack of affordable help can be stressful as is the loneliness of the experience that can keep you alone in the house with a family member and a chronic illness. Family caregivers feel the stress of trying to fit a life into a life of caregiving—going to work, maintaining important relationships, being an involved member of their community. They also cope every day with losses and grief and declines.

Family caregivers regularly interact in the health care system—they accompany their carees (the family members receiving care) to doctors offices, rehab centers for physical therapy, the emergency room for help, the outpatient center for treatments, the hospital for surgeries. We can discreetly ask these family caregivers to share their current stress levels, their overall stress levels and the causes of their stress. I say discreetly because many family caregivers will be uncomfortable talking opening about their stress in front of their carees, who already may feel like burdens.

According to research released by the Pew Research Center in 2013, about 39% of U. S. adults–up from 30% in 2010–care for an adult or child with significant health issues. Let's better understand how many of these family caregivers feel stressed and what stresses them the most. With that data, we can better focus funding and help so that those who care get the care they need.

Family caregivers are the backbone of our health care system. Let's take care of them, too.

We want the Centers for Disease Control and Prevention to add family caregiver stress as a epidemic to track. You can can help by signing our petition: http://bit.ly/trackstress.

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Lillie Fuller

Reading this made me cry! You know my Dad has been gone for almost 12 years and I still carry the stress of when I cared for him. I still worry and wonder what I could of done better to care for him. On top of that I worry if I am doing the right thing for my mom and I miss the life I did have. Some days it is all just too too much.