Caregivers: Our Unsung Heroes

I have always been a caregiver, but I never really knew what that meant. It isn’t really something you do; it is something you are, I guess.

When a loved one is diagnosed with a chronic illness, time stops in an instant. You can’t breathe. You pretend to be fearless and feign a brave face. You have no idea what anything means anymore. Nothing matters, nothing except the one you love.

There is nothing to guide you, not even your loved one’s face. Your mind races, “What do I do, What do I say?” but you keep it all inside. There is no user’s manual for this. Diagnosis day tosses you and your loved one into an immediate blur of necessary tests to determine next steps. And it’s not you who is enduring anything to get these results to find answers. It’s your loved one. You feel completely vulnerable. All you want to do is take it away or go through it for them.

Amidst this uncharted chaos, a strange, unfamiliar calm and a faint voice whispering from the wreckage reminds you to keep the faith. Your life’s perspective is forever changed. Time has deeper significance. While you try to maintain a normal work and home life, you find that it no longer has the same meaning. You kick into an unknown gear and become laser focused on your loved one’s survival. Other priorities soar out the window. You are no longer defined by unimportant things but rather, and more profoundly, by who you are intrinsically.

In that moment, you finally find your breath and say: “I love you, and you are not alone. We will fight and get through this together, and I will be there with you every step of the way.”

“In the now and in the know” are the pilot. This is out of your hands. This leap of faith surpasses understanding, and you have no idea what you are capable of learning, doing or becoming. You are there to give hope and hold your loved one up when they don’t have the strength. And you listen, really listen, with an open heart and a nurturing ear as your loved one teaches you so very much about caring for them.

As a caregiver, everything shifts and is turned upside down and inside out. You find yourself less tolerant of negativity, weeding out stupid, senseless things and fielding ridiculous questions and comments from people you know care but have an awkward way of expressing it. You often forget to give a thought to yourself, and you feel guilty if you do, as nothing compares to what your loved one is going through.

Hope and healing are front and center. Living in the moment is your creed. Oh yes, and love. You assemble a support team and delegate roles. You research and ask tons of questions, vet and secure the best specialists, set and attend every appointment, take detailed notes, record vital signs and test results, organize paperwork, find anecdotes to ease discomfort, and join every blog that may lead to further knowledge, resources and support. Medical acronyms and blood test ranges become a familiar language as you throw survival statistics aside. As a caregiver, you learn to set boundaries and say no. Strangers you meet during treatments become new friends and sometimes surrogate family. You are there to soldier through the losses and celebrate the daily victories.

I guess in some way, you become an extension of the one you love and are caring for. You feel their pain and fatigue; you navigate alongside their many bodily changes and side effects. And, as your loved one’s biggest advocate, you try to make food they can eat and get them up slowly as they begin to walk after procedures. You keep lists of the days and times for all medications so none are missed, even throughout the night. Laughing and making jokes through tough times becomes a necessity. You make enough space for your loved one’s introspection, but you remind them that they are not their disease. When your loved one is ready, you ensure family and friends come over to visit.

What matters most is your loved one and tapping in to what brings them everyday joy, purpose and comfort.

Someone said caregivers are unsung heroes. I am not so sure about that. What makes a hero to me is simple, an innate empathy for the fragility of life and an inexplicable yearning to give of one’s self out of love. Caregivers would probably tell you that those they care for are the real heroes. Because caregivers are given the greatest gift, a hero who transforms them into the best version of themselves they never knew was possible.