|Sitrep Oct 2022 Vol. 9
Thoughts From our Board
CAPT Patricia Watts Kelley, PhD, NC, USN, (Ret.)
Historically, society has relied on women to provide what is often referred to as “eldercare,” especially daughters, daughters-in-law, and wives who were not in the workforce. In a previous study by Kelley and colleagues (2015), the injured service members from the Wars in Iraq and Afghanistan who require caregiver support are younger, with an average age of 29 years. Today, while the typical caregiver is still a woman, increasing numbers of men are also caregivers.
Regardless of gender, the caregiver most likely needs to work full-time and has limited schedule flexibility to balance caregiving, work, and other responsibilities. Today’s caregivers are assuming more complex roles in addition to basic caregiving, such as health and medical care at home, caregivers are navigating complicated and fragmented healthcare systems and serving as surrogate decision makers. Federal regulations encourage shorter hospital stays with clear expectations that caregivers can and will support a recovering and/or disabled adult at home and manage the transitions in care to and from the hospital. From previous studies, caregivers are often expected to manage technical procedures and equipment for recovering or injured service members at home (e.g., tube feedings, drainage tubes, catheters, complex wound dressings) and manage a complexity of conditions with sparse or no training. According to the National Alliance for Caregiving, Caregivers describe learning via on-the-job training and “trial and error” with the constant worry that they will make a deadly mistake. Caregivers interact with a wide range of providers in several systems. They are responsible for providing information regarding medical histories, social support, medications, and treatment plans. They also work with and arrange the services of community-based organizations. In addition to the coordination of care, financial responsibilities for items not covered under insurance can impact the success of their daily caregiving. Despite the critical and essential role that caregivers serve in caring for their loved ones with complex health needs, caregivers are often marginalized or ignored in the healthcare delivery system and are often overlooked. Substantial evidence indicates that caregivers are at higher risk for depression, anxiety, stress, and emotional difficulties compared to non-caregivers. Evidence also suggests that caregivers have lower self-ratings of physical health, elevated levels of stress hormones, higher rates of chronic disease, and impaired health behaviors. Caregivers who cut back on paid work hours or leave the workforce to meet caregiving responsibilities lose income and receive reduced Social Security income and other retirement benefits; they may also incur significant out-of-pocket expenses supporting their loved ones. Despite the array of negative consequences, caregivers also report positive outcomes. Numerous surveys suggest that, for some people, caregiving instills confidence, provides lessons on managing difficult situations, brings them closer to the care recipient, and assures them that the care recipient is “well cared for”. In conclusion, caregiving is an essential component of support for our service members and Veterans; however, we must recognize that the support and assistance for the caregiver is essential to maintain their health and wellbeing
*Refences provided upon request
Adapt and Overcome
In 2015 while my husband Sean was serving in the US Navy, he deployed to Afghanistan. A few months after his arrival in Kabul, he suffered an anaphylactic allergic reaction and was medevac’d out. He received his initial treatment in Germany and was eventually sent back to the U.S. for long-term medical treatment. This started the challenging journey of going from specialist to specialist, trying to identify the cause of the reaction and how to prevent it from happening again. Thankfully Sean was quickly enrolled in the Navy Wounded Warrior Program and gained a whole team of professionals to help us navigate this process. During this period, he developed excruciating head pain, which was eventually diagnosed as Trigeminal Neuralgia also known as the suicide disease due to the high rate of suicides as a result of intense pain. His treatment plan included many visits to Neurologists, pain management, and psychotherapy to help him deal with his pain. The prescribed medications for Trigeminal Neuralgia treatment led to other complications and conditions. I took great pride in being Sean’s caregiver and attempted to control the situation by managing his medications and medical treatment. I researched everything I could to learn about his illnesses. It was exhausting for him as well as for me as his caregiver. In 2016 he underwent neurosurgery at Walter Reed National Military Medical Center. The Navy Wounded Warrior Program representatives walked alongside us during this time. Master Chief John Schwanke was his non-medical care manager and was bedside at the hospital, providing a listening ear and much-needed laughter. Becky Baker, one of his case managers, worked diligently to get me lodging at Fisher House during the two weeks that Sean was in the hospital. During his neurosurgery, Becky sat with our family and brought us snacks and puzzles. These acts of kindness helped balance out the difficult parts of Sean’s hospitalization. I began to hang my hope on each new surgery, treatment, or medication (and there were and still are numerous), looking for a cure. Each new plan had mixed results, some positive and some not. There were times that I leaned on my faith in God and accepted support from my friends, family, and the Navy Wounded Warrior Program representatives. But there were plenty of other times I thought I had to figure it all out on my own. Somehow as a caregiver, I felt I wasn’t allowed to drop my pack. Now in 2022, I look back on this journey, and I can proudly say I have better balance. My faith has been a stronghold, and I’ve learned it’s not entirely up to me. I try to appreciate the good times a little more and stay present in the moment. We’ve seen our children graduate, marry, and now we have grandchildren. When times are difficult, I readily ask for prayer and help and reach out to my support system. Being a caregiver can be a roller coaster, but you are not alone on the ride