Advertisement

The Most Important Mental Health Issue You’ve Never Heard Of

      I am the person least likely to talk about emotions — I have bottled up a lifetime’s worth. As a family caregiver for over 20 years, I have been on a seemingly endless roller coaster of emotional stress that has affected me in ways I never imagined. And I suspect I am not alone.
      The wisdom of hindsight has convinced me that it’s time to bring this topic out from behind the curtain and make it part of a broader dialogue: the impact of caregiving on the caregiver. The specifics may surprise you.
      Let’s start with guilt. The caregiving journey is driven by guilt, which comes in many shapes and sizes. As an adult daughter and only child, I had no one to share the experience with. I had to make all the decisions and live with the consequences. First, there’s the guilt of feeling like your life is being pulled out from under you and you just want it back. Then you feel guilty every time you are exhausted and raise your voice in anger to the person you care for. Next, when you must place your loved one in a facility, the guilt is overwhelming — even when you know you are totally exhausted, broke, and have no other choice. Finally, the guilt becomes crushing when you must decide to stop life-saving measures like antibiotics — even though you are respecting your loved one’s wishes.
      Next in line are frustration and anger, which lead to anxiety. Nothing prepares you for the daunting task of dealing with our fragmented health care system, especially when it comes to elder care. As a caregiver, you become the middleman who has to navigate, communicate, and problem solve. You become the care coordinator and the insurance intermediary. You track down services, interview home health agencies or nursing homes, navigate the Medicaid spend-down, accompany family members to medical appointments, research health conditions and diagnoses, analyze finances, pick up medications, arrange appointments … and make endless phone calls.
      Figure thumbnail fx2
      Caregiving is an endless roller coaster of emotional stress.
      Finally, abject fear also plays a key role, leading to more anxiety. What are caregivers fearful of? Common scenarios include:
      • Being unable to afford care as the health care needs of your parents increase.
      • Losing your job because of caregiving responsibilities and the time off required to deal with doctors’ appointments, transitions of care, emergency department visits, legal issues, and more.
      • Living with the constant fear that your dad with Alzheimer’s will wander or fall because you can’t find/afford a caregiver and must leave him alone at home.
      • Expecting retribution by nursing home or rehabilitation facility staff because you complained about the quality of care your mom is receiving.
      • Receiving the 3:00 a.m. phone call after your mom falls getting out of bed to use the bathroom.
      • Not having time to go to the doctor or have tests to find out if the lump you discovered is breast cancer.
      • Fearing you’ll get Alzheimer’s yourself because both of your parents have it.
      All of this leads to emotional and psychological strain that can linger for years. My friend Meryl Comer often speaks of the “heightened state of alert” we remain on — even after caregiving is over. For many of us, this is a form of posttraumatic stress disorder, as described by Judith Graham in a New York Times article (“For Some Caregivers, the Trauma Lingers,” Jan. 30, 2013; https://nyti.ms/2NOJUvw) and more recently in a blog post by Maria Deneau of the Women’s Alzheimer’s Movement (“Alzheimer’s Caregiver Burnout,” Oct. 15, 2018; http://bit.ly/2Jy4ryM), based on her own caregiving experience.
      In my own situation, years would pass without anyone asking how caregiving was impacting my health and well-being. It never occurred to my family, friends, and colleagues that the cumulative effects of over 20 years of being a one-person care team for my parents took an emotional toll that can scarcely be quantified. One of the most noticeable lingering issues is my brain has been rewired to expect the phone to ring at 3 a.m. This was the time health care providers typically would call to inform me that my mom had been injured in a fall. Even though my mom died 3 years ago, I am still on high alert, expecting the call to come again.Improving the work life of health care providers (which includes family caregivers), enhancing the patient experience, improving population health, and reducing costs comprise the four pillars of the Quadruple Aim.
      Our country has begun a serious dialogue about mental health at last, typically in the context of the mass shootings that have become all too common. However, in a country with tens of millions of family caregivers (AARP, “Caregiving in the U.S.,” June 2015; http://bit.ly/2XxXHLe), the emotional toll of caregiving also must be acknowledged and addressed. We have been leaving our caregiving warriors behind on the battlefield.
      Ms Sterling was a caregiver and healthcare advocate for her parents for 20+ years. She is a speaker, writer, and educator on the challenges of family caregiving, dementia, person-centered care and technology. She is EVP of Caregiver Experience at Livpact. Follow her on Twitter at @SterlingHIT.