Music: Uplifting Caregivers & Patient Advocates, One Song At A Time

Hi everyone! Well, I had planned on writing my usual weekly blog post of 1,500 to 3,000 words. But, as caregivers/patient advocates know, what’s planned for a week often takes on a life of its own and free time becomes fleeting. This past week was one of those for me. While this post is shorter than usual, I hope it’s just as enjoyable, informative, and thought-provoking.

Since last Sunday’s post about burnout, it’s been seven days of up, down, and all around…many times.

On the caregiving/patient advocating for my parents side of life, there were doctor appointments to schedule (both future and urgent), transportation to appointments, lab work to be reviewed, medication to pick up, special new dietary restrictions to consider, preparing meals, research about an upcoming surgery and coordination for it along with pre-op Covid testing, imaging tests to be determined and scheduled related persistent stomach pain, research about the medication Hizentra and “go/no go” decisions about continuing those home infusions (it was a “go”), MANY conversations with doctors and other healthcare team members, and so much more.  

On the business side of life, I had to get done the essentials of my “to do” list. That included preparation for and amazing conversations with three of my initial guests on the upcoming new 1 Day 1 Week podcast series. I’m so excited for this new ongoing addition! It is intended to make the experience on the website even more helpful for caregivers, patient advocates and all visitors.

Podcast discussions will touch on a wide array of important topics from the caregiving/patient advocacy perspective, while weaving into the overall landscape of the challenging healthcare systems in the U.S. and around the world. The guests will include thought leaders on topics such as health literacy, nursing care, home health care, and caregiver mindfulness, just to name a few. Other guests will be caregivers and patient advocates who have a breadth and depth of experience from which everyone can learn.

On the personal side of life, well…it wasn’t very personal. I had to reschedule calls with friends and others I caught up with briefly while in transit somewhere. The reason wasn’t just about my caregiving/patient advocacy taking up much of the week. My seven-year-old laptop had exceeded usability after the most recent operating system update, so I needed to purchase a new one. That was exciting, but since I began setting it up yesterday (Saturday) morning I’ve been on the phone with customer service for between 12-14 hours (!) trying resolve issues that shouldn’t happen with a new computer. Argh.

Notwithstanding the writing of a blog post and new computer issues, I’m quite sure this type of week resonates for other caregivers and patient advocates.

Well, as I thought about this past week and so many since June 2018, a song came to mind. I know…that’s not a surprise for those of you who have read previous posts or have been a part of my life for any length of time. Music resonates within me and has been a companion along life’s journey. This is universal for the lives of people everywhere.

Music can be uplifting, comforting, supportive, and more.

Although a song may or may not say exactly what we’re thinking or feeling, the beauty is that we are free to (and very often do) use our absolute right to interpret music to our hearts’ content. Maybe it’s the melody, or the lyrics, or the refrain from a piece of music that hits home and provides us what we need. Whatever it is, music is freakin’ awesome!

Although my interpretation of the song I alluded to likely isn’t exactly what was meant, so many of the lyrics on their own really fit. I’m quite certain these resonate for many who have similarly walked the caregiving/patient advocacy path.

So, I imagine by now you’re wondering about the song and lyrics. I’m happy to share…

Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky

To me, this is about living in the moment…today. As a caregiver and patient advocate there are things in the future that no doubt will be challenging. Among an endless list of possibilities, this may include upcoming chemotherapy, an organ transplant, major heart surgery, or the loss of your loved one/patient.

However, it’s important to stay present, so our minds are as clear as possible to handle what’s right in front of us to be the best we can. Although that surely can be very difficult to do at times, keeping our heads up to the sky helps the positive energy flow within ourselves and hopefully on some level that transfers to those we care for…providing them comfort and peace they wouldn’t otherwise know.

You gotta be…

Separated below are different parts of the refrain, which of course are repeated in the song. My overall interpretation of the entire refrain is that you gotta be a whole host of things as caregiver/patient advocate. Although often easier said than done, these are essential.

You gotta be bad, you gotta be bold, you gotta be wiser

Bad, bold, and wiser…it’s important to always be gaining knowledge through experiences, whether that is related to caregiving or advocating. With that we become wiser and better equipped to handle difficult situations in bad (slang for “even better than good”) and bold ways.

You gotta be hard, you gotta be tough, you gotta be stronger

Hard, tough, and stronger…these can be applied to many aspects of caregiving and patient advocating. Most often you just have to be hard…not breaking down when inside you are feeling your own pain and that of the person you’re caring for. Tough…relating to intestinal fortitude (no healthcare pun intended) is necessary in some of the most physically, mentally, and emotionally trying situations. This is about having the courage, resoluteness, and endurance to see everything through, when it would be easy to quit. All of this…takes being strong…in many ways, especially mind, body, and spirit. You can do it!

You gotta be cool, you gotta be calm, you gotta stay together

Cool, calm, and stay together…juxtaposed to the previous parts of the refrain, it may seem incredibly challenging, conflicting, or downright impossible. How can a caregiver/patient advocate stay cool and calm in light of dealing with a multitude of stressors? Ahhhh, yes, “easier said than done!” I, nor any caregiver or patient advocate, is perfect. We do our best knowing that cool and calm truly does help us stay together inside ourselves – which translates to being present in a healthier way for our patients, whether loved ones or those who otherwise have entrusted their well-being to us.

All I know, all I know, love will save the day.

Well, this is the final line of the refrain – and is far reaching. My interpretation – within ourselves we have an inherent belief, motivation, and commitment that all we do as caregivers and patient advocates is about love.

It saves the day.

So, have you figured out the song? It’s a one-hit wonder by Des’ree in 1994 called You Gotta Be. I’m going to guess many, if not all, of you know it. Whatever the case may be, I invite you listen and enjoy –


Caregiver/Advocate Takeaways

  • I think this week the takeaways are straight forward above within the lyrics and interpretations.
  • So, that leaves the weekly recurring takeaway. No matter what is written in a post, it is always important…to read and understand the American Hospital Association’s Patient’s Bill of Rights.

Thanks for reading Music: Uplifting Caregivers & Patient Advocates, One Song At A Time. As with other 1 Day 1 Week posts, you’re welcome to share your thoughts below and/or share a story as a full blog post of your own. Whether you’re a caregiver, patient advocate, or involved in caregiving/patient advocacy in some way, the worldwide community of caregivers and patient advocates can benefit individually and collectively from “hearing” what you share about your experiences.

If you have a favorite song or two that resonates for your caregiving/patient advocacy journey, don’t hesitate to share it below and let us know why. We can all gain strength from your perspective and feelings.