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: 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 of 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 massive and dangerous amounts of opioids, sometimes resulting 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.
As the government tackles America’s opioid crisis, one of the challenges will be ensuring appropriate access for patients requiring these medications while also providing better insight, guidelines and engagement to prescribing physicians.
An additional yet unaddressed challenge remains the involvement 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, which 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 my wife’s behalf, not one physician, physician assistant or nurse has ever taken seconds to say to me, “Hey, she’s got chronic pain issues, and is 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, the patient is better served when the family caregiver possesses the necessary resources to care for 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, provide too little. Either way, significant attention is required on the caregiver’s part to better understand what these drugs will do to their loved one. Behavior changes, mood swings, erratic actions and dependency can erupt at blinding speed. The voice of the patient can easily be muffled by the receptors’ demand, 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 narcotics abuse or jeopardize their loved ones’ health.
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 who regularly takes 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 population of aging Baby Boomers, 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 quality of life for these individuals. The person picking up those medications 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.
I encourage prescribing physicians to 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 they will ever know. Addressing the challenges and pitfalls while educating caregivers about the impact of opioids on their own lives shines light on the path toward 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).
PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.
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