The time following a severe traumatic brain injury (TBI) can be confusing and frightening for the entire family. While the person who experienced the brain injury has a long road towards recovery and rehabilitation, their family will also have their lives permanently changed. Without the proper support, the strain can be debilitating for all involved.
Up to 29% of the US population is caring for someone chronically ill or disabled. A significant portion of those are entrusted to care for loved ones who have suffered debilitating brain injuries. Every November, National Family Caregivers Month honors those who are placed in the role of caregiver for their commitment, care, and support they offer to those with debilitating injuries and illnesses.
While they deserve acclaim year-round for their efforts to care for injured loved ones, National Family Caregivers Month helps ensure they are acknowledged for their difficult but rewarding efforts.
Close family and friends accept a heavy burden when they find themselves as the caregiver for an individual who has suffered a severe traumatic brain injury. While mild to moderate brain injuries can have lasting effects for the injured individuals, those who experience severe TBI face much more pronounced challenges and greater disability.
In the past, the rehabilitation period for brain injured individuals was believed to be relatively rigid. The medical community believed positive change could only occur within 6 to 12 months after the injury before progress leveled off and stopped completely. However, more recent findings have made it abundantly clear that positive change could occur for the rest of an individual’s lifetime after injury.
Interestingly and unfortunately, these findings have brought about a few negative changes in the typical rehabilitation period for those who have experienced severe TBI.
Dr. Gordon Atherley recently interviewed Rolf Gainer, Ph.D., Vice President of Rehabilitation Institutes of America, on his show “Family Caregivers Unite”. In the interview, Dr. Gainer explains how patients are now going home from the hospital “sicker and quicker” due to the high financial cost of rehabilitative services and the unclear timetable for positive changes.
However, as inpatient rehabilitation times decrease, family members are forced to shoulder increasing responsibilities. Far too often, they attempt to carry this weight alone, which can be disastrous for their health and can even limit the potential improvements for the injured individual.
Home rehabilitation does offer many potential benefits, but not without the support of both professional experts with a knowledge of brain injuries and family caregivers. As Dr. Gainer highlights, that positive outcomes for those with severe TBI increase as the frequency and intensity of treatments increase. With the involvement of both caregivers and medical professionals, rehabilitative exercises and treatments can be given more frequently and with more focus on the individual.
Without outside support however, caregivers and those who have been injured suffer.
A severe brain injury and the extensive mental and physical symptoms associated with the injury will not go away. Injuries of this magnitude have life-long implications and caregivers should prepare themselves.
The role of caregiver is noble, but it also has a clear effect on someone’s physical and mental health. Without extra support, the role can eclipse most other aspects of one’s life. Any role that is all-consuming is also exhausting and non-sustainable. To provide long-term care for a loved one it is also highly important to keep yourself healthy.
Caregivers should be sure to invest energy in staying active outside the home, nurturing relationships and friendships, and living a full life. It can feel selfish to take time to focus on yourself when you are compelled to spend the energy caring for an injured loved one but, as Dr. Gainer points out, “when a loved one becomes their sole activity, there are usually problems.” By taking advantage of support and care systems like home health, you can better ensure your own ability to provide care in the long-term.
By allowing professionals to provide support you can gain the highest level of care, and best potential long-term outcome, for your loved one while you also care for yourself.
However, there is one large issue looming over this entire situation. Severe TBI is often financially exhausting and caregivers must make early plans for how they will be able to afford care not only for the injured individual, but for themselves as well.
Current estimates from the Evercare Survey of the Economic Downturn and Its Impact on
Family Caregiving put the value of the services family caregivers provide for “free,” when caring for older adults, is estimated to be $375 billion a year. That is nearly double the amount actually spent on homecare and nursing home services combined ($158 billion). While those services may be “free”, they still have a hefty cost on both health and pocketbooks.
Early planning can alleviate much of the anxiety that comes with caring for someone with severe brain injury. As time goes on, injured individuals age just as their caregivers do and both will need increased care. Without a workable financial plan set in place ahead of time, this can be catastrophic, as financial resources can often be drained early on following the brain injury. Begin looking for support resources which can help with gaining Medicaid waivers and grants for treatment, and work with professionals to make a long-term plan. Otherwise, you will likely find yourself constantly fighting to find funds to provide care.
Severe traumatic brain injuries are hard on all involved, including caregivers, but faith, patience, and continued support can be astonishingly fruitful. It helps guarantee the most positive outcome possible. It may not always feel like it, but remember you are doing the right thing and you should be proud of the love and care you have provided. Remember it is just as important to invest energy in your own health as it is to help those around you who need support. Your role as a caregiver can be taxing, but if you keep yourself healthy, the health of your loved one will also benefit.
The role of caregiver can often feel thankless, but National Family Caregivers Month helps show the appreciation we all feel for those who commit themselves to those in need of support, love, and care.
You can hear the full interview between Dr. Gordon Atherley and Dr. Rolf Gainer on what it means to be a caregiver for a loved one with a severe traumatic brain injury, as well as what support options are available for caregivers, here.