Thankful for Caregivers
Editor’s Note: T.J. Sharpe is a Stage IV melanoma patient who shares his journey through cancer in the Patient #1 Blog.
He was diagnosed in August 2012 with melanoma tumors in multiple organs, only four weeks after his second child was born. Since then, he has undergone six surgeries and four immunotherapy treatments over two different clinical trials. The initial failures, and subsequent complete response, have been chronicled in his blog posts since December 2012. In addition to writing, he is a keynote speaker and consultant to the biopharma and clinical research industries, bringing an educated patient voice as a true stakeholder in challenging health care's status and making a difference in patients' lives via his company, Starfish Harbor LLC. A South Jersey native, T.J. lives in Fort Lauderdale, FL, with his wife Jennifer and two young children, Josie and Tommy.
With the approaching 2017 holiday season, we are reminded there is plenty to be thankful for. As a patient, that thankfulness extends out further – to doctors, nurses, clinical researchers and the many that are directly or indirectly involved in helping us live longer, better, healthier lives. Yet there is one person (or, sometimes, one group of people) who deserve the same or more gratitude extended to the professionals charged with our health care. Patients – when was the last time you said, “Thank you” to the person(s) who sacrifice the most during this process; when was the last time you voiced your appreciation to your caregiver?
The qualifications on being a caregiver are pretty basic – have a concern for someone you love and a willingness to be at their side during their time of illness. The responsibilities, though, pile up quickly, and can overwhelm even the most dedicated spouse, parent, child, sibling or friend. Too often, caregivers experience most of the same fears, risks and uncertainties, with a fraction of the attention and support given to patients. As a patient, our job is often very simple, if not always easy – just get better. Our caregivers juggle countless concurrent tasks with our treatment and recovery, while having to balance their own health and emotions, along with external obligations.
Oh yea, life – it doesn’t stop just because you get diagnosed with a chronic or serious illness. Maybe it feels like that as a patient, but the world keeps turning, and most often, it is the caregivers who shoulder the burden of this new normal in addition to existing commitments. Bills still need to be paid, kids still need to get to school, meals still need to be cooked and served, and homes still need to be kept. These are just the basics to maintain a baseline family life; the iceberg of duties goes much deeper, and often many of those are heaped onto an already overflowing plate.
Each time my path crosses with a newly diagnosed couple, the last thought I leave them with is a thank you, to the caregiver, for all the times the patient doesn’t say it. I have a hard time remembering to thank my wife for the countless sacrifices she has made in our journey through stage IV melanoma; she has endured far too much with far less everyday support. Many of us take their selflessness for granted; even if it is unintentional, or there is existing acknowledgment, I would venture a guess that it rarely encompasses the full grasp of the importance your caretaker has on your recovery.
To my fellow patients, take a moment to consider how much more difficult this journey would be without someone there with you. Then find that person and tell them, right now, how much you appreciate their care, their concern, their sacrifice. Go ahead – do it, right now. The rest of this blog post will wait until you get back.
If you are a caregiver – be sure and take care of yourself. It’s easy (sometimes too easy) to put everything else before your physical and mental health. Find time for you. Don’t forget YOUR doctor’s visits, don’t neglect YOUR diet and exercise and, especially, make sure there is someone who YOU can rely on for a bit of support, too. You need it.
Most of all, thank you. For the times you deserve to hear it, should hear it, NEED to hear it and don’t. From every patient out there, to those who care for us, THANK YOU. Our lives would not be nearly the same without you. Keep up the good work.
Blog post originally appeared on LillyPad.
We always welcome input from the larger clinical research community—patients, caregivers, researchers—and periodically feature their voices on our blog. Hearing from them gives us new viewpoints and insights in making research better.