Life Care: Surviving the First Hours, Weeks, and Months of a Sudden Life-altering Medical Event

Life Care Skills 101 - How to Survive a Medical Catastrophe

"Linda" my husband screamed my name. Startled, I was busy studying for the case management certification exam while our newborn twins were napping. On this beautiful September day, my husband decided to trim tree branches using a chainsaw. Hearing his cries for help, I ran outside, finding him lying on the ground, in severe distress, without evidence of external open wounds. Long story short, my husband was airlifted to a tertiary care hospital. The neurosurgeon announced he sustained multiple vertebrae fractures, the fall causing bone fragments to retro-propel into his spinal cord, causing an incomplete spinal cord injury (SCI) from L4 to S1. His other injuries were minor in comparison. My young husband is now a paraplegic, and my premature newborn twins are five months old. My life passed before my eyes; it hurt to breathe, and I was numb with pain. How was I going to survive this medical calamity?

Over the following weeks and several months, I honed my life care skills that got me through the most harrowing medical and personal experiences. Since then, educating, supporting, and advocating for patients and families experiencing a medical catastrophe has been one of my most rewarding experiences as a case management nurse. I provide them with my life care skills 101 – getting the acute phase of sudden medical adversity.

Create A Care Team

Decide who will manage and oversee the numerous critical care issues related to the patient. Typically, this person is the spouse or parent interfacing with the medical staff, discussing decisions, and having the authority to make decisions. Designate a communicator to disseminate ongoing communication updates to designated family, friends, and co-workers. Only some people want to start a blog or use facebook. CaringBridge, a free secure online website for sharing health updates with family and friends, was my choice with our medical crisis. My girlfriend was the communicator posting frequent updates on CaringBridge, so friends and family obtained the latest news about my husband's condition. These posts drastically reduced my phone calls. Numerous resources exist within CaringBridge, including Meal Train, Shipt, and Gofundme, allowing loved ones to support our family quickly. Appoint a Project manager to create tasks in the CaringBridge Planner or generate a Google Doc or spreadsheet stating, "Linda needs someone to buy groceries, babysit, etc.," allowing your community to lend support.

Let people love you

When tragedy strikes, loved ones feel helpless, and they know you are experiencing profound agony. Permit people to perform generous acts such as cutting the grass, cleaning your house, or picking up the kids from school. These activities generate a sense of well-being for everyone impacted. When people said, "Let me know how I can help," I directed them to my Meal Train or a local restaurant. Place a large cooler and a plastic bin outside the front door so folks may drop off meals or care packages. I will never forget the red cooler outside our front door with repeated delivery of tasty meals and tender notes comforting me during my distress and exhaustion. Pizza delivery to our home occurred every Sunday for almost a year. A neighbor I barely knew deposited adorable Halloween pumpkin outfits for our 6-month-old twins. My husband's spinal cord injury was a tragedy, but our family experienced priceless generosity from our community. I treasure these moments of love despite overwhelming heartbreak.

Apply for Social Security Disability Insurance

After learning my husband was a paraplegic, I asked the hospital's trauma ICU case manager how I should manage my husband's short and long-term needs. He only said one sentence, "Apply for SSDI." I thought the case manager was crazy. Unrealistically, I anticipated my husband would recover and return to his lifestyle, similar to pre-injury. Three months later, I was online applying for SSDI and regretted not performing this immediately. I learned you should apply for disability benefits when you develop a disability (Apply Online for Disability Benefits). If your application for Social Security Disability Insurance (SSDI) is approved, you must wait five months before receiving the first SSDI benefit payment. The first payment is the entire sixth month after the SSDI application date. A key point to remember is the SSDI payment is from the application date and NOT the date of injury or diagnosis. The Department of Social Security has identified impairments within 14 major body systems considered severe enough to prevent gainful activity. The impairments include brain tumors, traumatic brain injury, and diseases requiring bone marrow transplants, to name a few life-altering health conditions.

Confirm Employment Leave-of-Absence, Disability Coverage, and Return-to-Work Policies

Refrain from relying on your immediate boss to know the exact details of these critical policies. Communicate directly with your employer's human resources department. Both my husband and I lost our jobs during his hospitalization, recovery, and the resulting chaos, not comprehending specific policies and depending on immediate managers who were not the corporate HR managers. The good news is that our former employers eventually rehired both of us, but I will always remember the important lessons I learned.

Live One Minute At A Time And Let Emotions Flow

The uncertainty of not knowing my husband's long-term prognosis and caring for my newborn twins with their medical needs was overwhelming. I learned to live hour by hour and sometimes minute by minute when the extraordinary responsibilities, decisions, and amount of work froze me. Allowing myself sensory moments grounded me, such as rubbing my dog's ears, feeling a cup of hot tea in my hands, and walking barefoot on the grass, provided bits of relief to my overwrought nervous system. Permit yourself space to release grief, anger, agony, and loss. According to Harvard Medical School, researchers established emotional crying releases oxytocin and endorphins. These feel-good body chemicals reduce both physical and emotional pain.

Find Personal Support

You are the central person holding everything together, and likely your children and other family members depend on you. Search for podcasts or apps that deal with your medical situation. Locate a mentor or counselor to vent and find emotional guidance. Making gut-wrenching decisions impacting your loved one and family long term is very stressful. Often, I was unsure of my next steps. The frustration of the unknown, momentous decisions coupled with colossal demands unleashes all sorts of emotions, which is normal. A personal support person is essential to get you through a crisis; this is the time for maximum support.

Lifecare skills are invaluable through any challenging event, especially a medical crisis. Utilizing these tools helped my family progress and eventually flourish again. I hope these interventions will also assist your patients and families during an acute medical event.  

References/Resources

The Basics About Disability Benefits: Social Security Administration

Is crying good for you?: Harvard Health Publishing/The President and Fellows of Harvard College