I Didn’t plan on this!

As a new nurse, many years ago, at Vanderbilt Hospital, working in the neuro trauma step down and physical rehabilitation unit, I recall certain family members expressing how they were unprepared to care for a loved one with TBI (traumatic brain injury), or SCI (spinal cord injury), etc. As one can imagine, caring for a newly cognitively impaired individual suffering post head trauma, or family member suffering new onset of permanent quadriplegia is not something any human being can ever plan for, or ever even want to have to imagine. As hard as I tried, having to navigate a family through the rigor of intense caregiving for a loved one who could no longer care for themselves was overwhelming as it could be. Oftentimes, my heartfelt compassion would spill over as I cried with a young wife who was facing a lifetime of caring for her new husband in a way she had never-ever dreamt of. I recall more than once, holding back emotion, for instance, while teaching a mother how to care for the forehead wounds where a “halo” apparatus was inserted, to help maintain the head and neck alignment from post-cervical surgery on her child’s head/neck. Helping the family caregiver focus on the task of doing gastric tube feedings or urinary catheterizations, or intravenous meds was a way to get to the better part of the journey. Yes, there is always a better place to be, than in the beginning of something you think you will not survive, but you do somehow. And like that famous Kelly Clarkson song, you learn that if it doesn’t kill you, it makes you stronger! I think the toughest part of family teaching was the coaching part. Coaching families “how to” do this and that was just plain tough. But especially when it came to coaching family caregivers how to focus on outcomes ahead. Focusing on the outcomes ahead outweighed the thoughts of the harsh realities that must be left behind.

Back then, we would have several weeks in the hospital setting to help families learn how to cope through the acute phase of neuro trauma induced life changes for a loved one that inadvertently affected a life change for the whole family. Now-a-days, there is either inpatient rehabilitation, long term care acute care facilities or nursing homes for families to “transition” along with a loved one from being independent to not being so. Then, we had more time in the acute phase to help families cope. But no matter where the transition takes place, it has to. One day, a family member is caring for themselves and the next, they may not be. We all seem to take this for granted. Who thinks in terms of how quickly life can change, right? I mean, we don’t plan on it! We don’t plan for crisis. And when crisis occurs, we either fall behind stumbling, or move forward somehow. Everyday, in my work as a geriatric care manager, I am reminded of those earlier days in my career. I am constantly reminded of those first families I met then-at Vandy, every time I meet a new caregiver now, who has that expression that reveals how lonely, afraid, sad and uncertain they are feeling about the journey ahead. No caregiver ever plans on being a caregiver, and that’s just a fact. But when duty calls, we go. Like a soldier into battle, caregivers must find the faith to be fearless and brave, even though they may recall a different plan. And like soldiers, caregivers plan to do their best, despite the cold, damp, lonely dark nights.

Everyday, I talk to someone who goes from being a stranger to someone who I know will be facing another day in the life of a caregiver. There is a certain bond that brings me to each caregiver, each new day, looking for another caregiver to help. Helping a caregiver give more time to care, is worth every tear or fear. While caregivers may not have planned on becoming a caregiver, the rest of us out here, can plan on finding a caregiver we know, and letting them know, how much we care about them! And we can do so as if it were intentional- as if, we planned on it!

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