The Road to Burnout City & Back: A Caregiver’s Perspectives & Practical Tips

October 11, 2021 /

Where to begin? Let me start by sharing that I am thankfully not burned out right now, so this post won’t be written from a place of complete exhaustion. That said, there’s no mistaking I have experienced an extreme burnout once along my caregiver/patient advocate journey since June 2018 – not to mention what I’ll call mini-burnouts. Regardless, I haven’t forgotten how I felt, though a sense of feeling for me was especially difficult to access at those times.  

It’s often said that burnout is right at the top of concerns for caregiver/patient advocates, but not necessarily by them. I believe the reasons for that are as endless as personalities, but there seems to be a common thread. Caregiver/patient advocates are fueled by easing situations for others and focused on the tasks at hand to do so, not on their own comfort and needs. This is true whether they come by that naturally, or necessity of the situation.

If we define burnout at a high level, it is a state of physical, emotional, and mental exhaustion. This can show up in different ways for people, but there are shared reasons such as not getting the help needed and trying to handle more than possible on a sustainable basis. Each caregiver/patient advocate’s responsibilities are unique based on the situations of their personal lives and those of the person(s) they are responsible for.

If someone who isn’t a caregiver/patient advocate looks at this thorough list of caregiving tasks, they can imagine any combination will bring a level of stress no matter what – and especially in light of (and often at the expense of) personal lives. Considering the multitude of responsibilities on that task list and possible combination of those being handled, you can then also imagine the vast extent of common caregiver problems. In light of all this, burnout comes as no surprise!

As you think about this further, you may ask “why the heck would I want to become a caregiver/patient advocate?” Or, for those already on the journey, “why did I choose this path?” Of course, there are simple and not-so-simple answers. From friends and acquaintances, at a high level I’ve learned that it’s by nature and/or necessity. Whichever of those, they all express the desire to make someone’s life (often a loved one…parent, spouse, sibling, friend) “easier” in a great time of need. For me, at a deeper level, it’s based in both fear and love.

Well, let’s start with the love…I have for my parents. They gave me life and have been rock solid support for me since the day I was born. While not always perfect (none of us are!), they endlessly came from a place of love. It’s truly amazing, because I know there have been plenty of times in their lives when that unbreakable parental love they have for me and my siblings has been tested. The three of us, individually and/or collectively, have presented scenarios in ways that challenged my parents to the point of exasperation and likely caused them to feel burned out in their own ways. They didn’t stop to think about themselves. They instinctually loved through the challenges in some very difficult situations, often at the expense of themselves. So, maybe it’s me emulating what I learned from their examples throughout my life or possibly it’s an innate part of who I am…or likely some combination, thereof. Whatever it may be, they’ve cared for me unconditionally and now I’m doing that for them…out of love.

Okay, so you ask, “Todd, but what about the fear aspect?” Good question. It has nothing to do with being afraid of any reprisals from anyone or anything of the sort. It has everything to do with the fear of losing my parents at some point and wanting to do all I can to:

1) prolong their life as much as possible, enabling them to enjoy their kids, grandkids, and everyone they hold dear as long as possible.

2) enable them to live comfortably at home, minimizing as much as possible the physical, emotional, and mental toll that older adults typically experience when having to deal with serious health issues and life overall.

3) guide their journey through the complex and flawed U.S. healthcare system.

(Note: I’ll touch on the #3 in a future post or podcast. Yes, stay tuned in the coming months for exciting 1 Day 1 Week podcasts on a myriad caregiving/patient advocacy and healthcare topics.)

Now that you have some background, it’s the perfect time to share about my Road to Burnout City.

At the time my mom’s health began to terribly crash in May 2018, the innate caregiver/patient advocate inside of me kicked in. I didn’t once pause to consider what it would mean to my life. My mom’s life was at stake!

One of my traits has always been leaving no stone unturned. That comes from always believing the devil is in the details and missing something could be very costly, personally and/or professionally. At times this can be a detriment, but in the matters of caregiving and patient advocacy, it’s been unquestionably helpful. Although that is true for “protecting” my parents from potentially perilous healthcare situations, it takes an extreme amount of time and energy – on the “front lines” and behind the scenes.

As you may have read in a previous post such as Caregiving: A Journey Like No Other, you are familiar with my mom’s healthcare journey. 17 hospitalizations (100+ days) in 22 months, from June 2018 to April 2020. Considering all the caregiving/patient advocacy that went along with that, and the countless outpatient appointments and tests that were interspersed, you might imagine I was tired. It didn’t register for quite some time because I was myopically focused. In addition to the constant urgent calls to doctors, interpreting lab work, making sure my mom had what she needed, etc., there were many things you might not think of including communicating her condition with family (often daily), taking care of the house, creating meal plans, cooking meals, and many more responsibilities on the task list link referenced above.

After about 15 months and 12 of those hospitalizations, I hit the wall…figuratively speaking. The cumulation of energy that had been going out and not replenished had caught up with me. It was official…I was toast, burnt toast!!

How did I know?

While it can show in different ways for people, for me one night I was sitting at my desk and a feeling of numbness overtook my entire being. I was paralyzed in body, mind, and spirit. Staring at the computer screen, my body was motionless, my mind completely devoid of any thought, my spirit depleted. I had nothing more to give. I don’t remember how long that acute “moment” lasted, but no doubt it was many minutes, if not an hour or longer.

When I finally “came to”, I imagine it was similar to how Joe Frazier and Muhammed Ali felt after their Thrilla in Manilla match in 1975, known as one of the most ferocious boxing events ever. I was thoroughly beaten and bruised, metaphorically speaking. Thoughts came to me, but I was sluggish to process them. It was like watching a replay of the fight in (very) slow motion. As unhurried as that movement was, my mind understood – I needed a break…or I might be broken!

That awareness and permission I gave to myself helped my mind become clearer…even though the rest of me was worn-out. Considering what to do, I recalled friends (old and new) in my life often reminding me to take time for myself, especially those who had been caregivers (or cared for) such as Jenn, Julie, Maria, Michele, and others. They would ask what I’m doing to take care. My common response, “thanks, but don’t worry, I get to the gym, and go for walks.” That was my rationalization which helped perpetuate focus elsewhere, on my parents. Some would also say, “Todd, it’s important to get away, even if just for a day.” While I knew this and surely had given the same advice to friends over the years, it took reaching this scary moment in time to fully grasp. Fear and love could no longer override what I had known deep down for quite a while…

…it was time!

Over the following week or so, I began to consider the practical aspects of what it would take to step away from caregiving and patient advocating for my mom. Although that was challenging, the harder part was the emotional aspect. Going away conflicted with my sense of responsibility. I would think “What happens if I’m not here to advocate for her in an acute situation like I had so many times?” Could I live with myself if something bad happened that could have been prevented if I was there? Many other thoughts crossed my mind, but you get the picture.

I have to say, while that concern and debate in my mind never fully dissipated, it was greatly eased as I assembled Team Keitz. The main part of the team was comprised of new healthcare industry friends locally, and my siblings out of state. Each had a role. Everyone on the team knew what the other person was responsible for, was given each other’s contact info, and provided my mom’s healthcare information (including doctors, pharmacy, equipment suppliers, etc.) Also, I made my mom’s key doctors and their support staffs aware of my travels and the members of Team Keitz. In case something happened, it was important they knew the temporary emergency contact (my friend Robin, a nurse and executive healthcare consultant) would be calling them.  

Considering all of this, I was able to head to Paris and Amsterdam for three weeks in November 2019 where I saw friends from the U.K., France, Germany, China, and the U.S. The trip was restorative and enabled me to return refreshed and ready for whatever would come my way. Good thing…

Days after I returned, my mom was back in the hospital, and it felt like I had never been away. Well, not totally, but the respite I had was clearly evident in my refreshed energy, mindset, and overall well-being.

Since then, especially considering Covid hit only a few months later, the challenges of caregiving/patient advocacy were front and center again…and more challenging in ways. But, I’ll save another blog post to share what that meant for/with my mom, and also my dad after being diagnosed with bladder cancer and going through two rounds of treatment to date.

For now, I’ll leave you with my new favorite saying found on the internet, that was cemented from watching my parents deal with their serious health issues …

“The greatest wealth is good health!”

I wish that for you and your loved ones!

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Caregiver/Advocate Takeaways

  • Burnout is real and dangerous for caregivers and patient advocates.
  • Burnout is sometimes visible, sometimes not. It’s important to talk with your support system – or outreach centers – to let them know you are struggling.
  • As hard as it is for us caregivers and patient advocates, find ways to take time for you. We all need to feed our souls in ways that keep us plenished.
    • Find ways within everyday life, whether that’s the gym, talking with a friend, watching a funny movie, etc.
    • Find time to get coverage and get away – even if it’s to the beach, mountains, lake or somewhere restorative for just one day.
  • We must make sure we take care of ourselves, so we can be there for our loved ones.

Tips For Caregiver/Patient Advocates When Planning Travel

  • Consider putting a team together with responsibilities such as Team Keitz in the post above. Although not necessarily comprehensive, here are things to consider:
    • Write out explicit instructions for each team member.
    • Decide on a “go to” emergency contact and team leader, which can be the same person.
    • Provide each member with detailed information about your loved one’s situation and their healthcare providers, including contact information.
    • If there are special situations or circumstances that may arise, and not be known from their detailed healthcare information (e.g. – mom sometimes has a spike in blood pressure at nighttime), convey that to your team and how to handle it.
    • Provide the team with a general outline (or specific, if needed) about your loved one’s typical daily routine. This is especially important in case a team member can’t get in touch with your loved one during hours they are usually available.
    • If possible, bring up the topic with your loved one about an emergency medical alert system (necklace, bracelet, etc.) and purchase if they are willing to wear it.
    • Make sure you have notified your loved one’s healthcare providers about this team. Provide them with the contact info for the team members and make an introduction (via email or phone) to the team leader.
    • Some healthcare systems like Cleveland Clinic Florida have a Medicare program available to Medicare beneficiaries with two or more chronic conditions. This can be helpful anytime and especially when you’re traveling.
      • Check with your loved one’s main healthcare system to see if something like this is available. If so, connect with that department ASAP and get the ball rolling for routine check-ins.
      • When you’re traveling, let them know you’ll be away, provide your team’s information, and ask your assigned care manager if they would check in with your loved one while you’re away.
    • Make sure you have the emergency contact officially listed on your loved one’s medical record at the healthcare provider/institution who care for them, so anyone in those offices accessing their chart can see the contact’s name and info.
      • You may need to fill out a form provided by the healthcare provider/institution and have it signed by your loved one. Make sure to ask if that’s needed and don’t delay. After returning the document, call and/or email to confirm it’s been officially entered and ask for official confirmation via email.
    • It’s important your team knows if there’s an official Healthcare Surrogate other than yourself. Provide their info to the team. That person will hopefully not be needed, but you never know.
    • It’s also important to let your team know if there’s a Power of Attorney, Advance Directive, Living Will, Do Not Resuscitate (DNR), and/or Physician Orders for Life-Sustaining Treatment (POLST). Ideally, your team leader, someone on the team, or someone the team has immediate access to, will be provided copies in case they are needed. Ask for this from your loved one.
    • As always, it’s important to read and understand the American Hospital Association’s Patient’s Bill of Rights. In a situation when you’re traveling, ask your team members to read it for clarification in case needed. At minimum, make sure they have the link for easy access.
    • Now…go take that break you so need and deserve! 🙂

Thanks for reading The Road to Burnout City & Back: A Caregiver’s Perspectives & Practical Tips. 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.