Politicians, pharmaceutical companies, physicians, patients, attorneys, law enforcement, and the common citizen have all weighed in on the public health emergency we know as the opioid crisis. Yet one demographic, with significant input into this issue, has received little or no mention in the discourse of chronic pain patients and opioids. That would be the 65 million and growing population of family caregivers.
Serving as a caregiver for my wife for more than 30 years, I’ve handled enough opioids that their street value easily runs into the millions. A car accident in college left her severely disabled with massive orthopedic trauma, eventually costing her both legs. The number of major surgeries she’s endured has soared to at least 78 and she’s undergone twice that number in smaller procedures such as nerve blocks, infusions, etc.
The amount of pain my wife lives with is staggering, and she’s done it since Reagan’s first administration. Managing the pain continues to be a moving target for her, as well as the physicians who’ve treated her. She is currently working with her fourth pain specialist. A few of her doctors throughout the years overshot the mark and prescribed her massive and dangerous amounts of opioids. Some of those times resulted in seizures and even respiratory arrest. For most of those frightening events, I was the only one present to assist her and call for help. No training for any of those medical incidents was covered when I majored in music decades ago.
As the president tackles America’s opioid crisis, one of the challenges will be to appropriate accessibility to patients requiring these medications but to provide better insight, guidelines, and engagement to prescribing physicians.
An additional, yet unaddressed challenge remains the issue of family caregivers. I regularly engage with pharmacists, physicians, nurses, hospital staff, and a patient with significant health issues as I act on behalf of my wife. I alone know her complete patient history that covers more than 80 physicians in 12 hospitals. On any given day, I, like millions of my fellow family caregivers across America, regularly perform tasks normally handled by trained medical staff. None of us has attended “Caregiver University,” and we struggle daily to wrap our arms around an often-impossible set of circumstances, many of which regularly involve opioids.
When writing the countless prescriptions handed to me on behalf of my wife, not one physician, physician assistant, or nurse ever took seconds to say to me, “Hey, she’s got chronic pain issues, and taking a significant amount of medication for an unforeseeable amount of time … you might want to seek some counseling and/or support groups for yourself through this journey!”
Chronic pain is a family issue. It affects all significant (and a few insignificant) relationships of the person in pain. Treating someone in chronic pain is also a family issue. When opioids are introduced or removed in the treatment of chronic pain, the patient is better served when the family caregiver possesses the necessary resources to seek to their own emotional well-being through what will inevitably be a rocky journey.
The challenge of helping individuals with severe pain often leads physicians to overextend the dosage, or, due to fear of over-prescribing, they provide too little. Either way, significant attention is required on behalf of the patient’s caregiver to better understand what these drugs will do to their loved one. Behavior changes, mood swings, erratic actions, and dependency erupt in an often-blinding speed. The voice of the patient can easily be muffled by the demand of the receptors created by long-term opioid use. When that happens, it’s far too easy for caregivers to step into the role of enabler. Counseling, support groups, and other means of education equip caregivers to better understand this journey and not fall into traps that lead to abuse of narcotics or jeopardize the health of their loved ones.
All caregivers suffer from the “three I’s": We lose our independence, we lose our identity, and we become isolated. In that isolation, caregivers not only lose themselves but can easily journey down a path of bad decisions. If, while caring for someone regularly taking opioids, the caregiver suffers from back pains from constant lifting, what stops the caregiver from helping themselves to something that will make them feel better? These are not rare events. The scenarios extend into the horizon, and with the massive aging baby boomer population, the frequency and challenges will only increase.
Opioids provide a necessary function for many people in chronic pain, and special care should be extended to help provide a safer and better care of life for these individuals. The person picking those medications up at the pharmacy, helping organize the meds, and providing transportation back and forth to the physician’s office also deserves a safer and better quality of life.
Prescribing physicians, would you take an extra couple of minutes to offer guidance, support, and resources to the weary soul pushing the wheelchair or standing in the exam room corner? It can prevent more heartbreak than you will ever know. Introducing the challenges and pitfalls while educating caregivers about the impact of opioids on their own lives provides a well-lit path towards healthiness; healthy caregivers make better caregivers.
Peter Rosenberger is a 30-year caregiver, radio host, author, speaker, and advocate for caregivers. He hosts a weekly radio show on the topic, syndicated nationally and broadcasted worldwide. Rosenberger is the author of Hope for the Caregiver (2015) and Seven Caregiver Landmines and How You Can Avoid Them (2016). Follow Peter’s caregiving journey on Facebook and Twitter.
If you would like to write an op-ed for the Washington Examiner, please read our guidelines on submissions here.