Caregiving: A Journey Like No Other

Welcome, everyone! It’s taken me years to put pen to paper – or in this case fingers to keyboard – and it feels great to get this going! So, a sincere thank you for taking the time to read this initial post on the 1 Day 1 Week blog. Whether you are a caregiver, patient advocate, someone being cared for, or someone who cares about any of the aforementioned, I hope you find this blog engaging on an ongoing basis.

The name 1 Day 1 Week is born out of a mantra that we caregivers and patient advocates around the world often live by – for practical purposes and sanity-sake amidst these challenging and rewarding journeys we’ve chosen for whatever reasons and circumstances.

So, where to begin? As with a good book…let’s start at the beginning…of my caregiving/patient advocacy journey.

Since early in my mom’s Systemic Sclerosis (Scleroderma) journey that officially began in June 2018 and subsequently with my dad’s bladder cancer diagnosis in October 2020, it’s continually been obvious the new world I had chosen as caregiver and patient advocate was unlike any endeavor before. That’s an understatement!

In early 2018, during the discovery stage leading up to my mom’s diagnosis and every moment since, I’ve been learning more than one could ever imagine – about the nuances and complexities of my parent’s diseases, the pros and cons of the U.S. healthcare system, the indisputable need for patient advocacy, the plethora of wonderful (and sometimes challenging) healthcare providers, the healthcare protocols that can help or harm, the truly selfless caring of the support staffs in hospitals and clinics, the bounds of the human condition for anyone dealing with major health issues, and the often invisible journeys that caregivers and patient advocates experience day in, day out.

So, why has it taken me so long to launch this blog? Various reasons, many questions. I wondered…would the world want to hear what I have to share? How would it be best to share? What exactly would I share? How would I find time with the constantly changing situations and needs of my parents? Can I stick to the blog once I begin? Despite frequently receiving encouragement from many people in my world, it was difficult to imagine finding the time amidst my caregiving responsibilities, trying to make a living and making sure I didn’t burn out – which I have at times, but we’ll save that for another blog post. So, you might wonder, what changed? Good question! My answer: There wasn’t one a-ha moment. I believe it was a cumulation of encouragement (thanks everyone – you know who you are!), an abundance of experiences, and endless learning since June 2018 that ultimately led my fingers to write this first blog post. For some context about those experiences and learning, here’s a peek:

  1. An incomprehensible number of clinic visits with my parents for tests and doctor appointments (150, 200, likely more!), and 17 hospital stays in 22 months (over 100 hospital days!) with my mom from June 2018 to April 2020 – the last one a terrifying experience during Covid (she had sepsis pneumonia) where an exception was made by the lead ER doctor for my dad and I to come say goodbye. Frightening to say the least. The good news – she rallied and is still with us today. ~~ On my dad’s side of the healthcare journal, in addition to the numbers I quoted above, early in 2021 we drove 44.4 miles (to be exact) each way, every weekday, over six weeks to the clinic for him to receive his radiation treatments and concurrent chemo for bladder cancer. I’m grateful that he tolerated treatments relatively well and the healthcare staff was wonderful, though he recently had to go through another round of radiation due to the cancer metastasizing. Needless to say, we’ve got a lot going on!
  2. Through all the clinic visits and hospital stays, I saw so many people without proper (if any) representation – whether from loved ones or anyone – that it had my heart ache for each of them…from a healthcare standpoint and above all a human perspective. It’s so sad to see people going through everything from minor to major illnesses without someone there to advocate for them, transport them and at a core level simply sitting with them, holding their hands, or rubbing their backs to provide them comfort of knowing they are not alone. (Consider this was before Covid restrictions have made this even more challenging.)
  3. With each passing week of experiences, monitoring, researching, and reading I became extremely aware that while we have excellent healthcare in the U.S., there are many shortfalls geographically and socio-economically in terms of the quality of healthcare dispensed, accessible healthcare, affordable and adequate healthcare insurance, competent caregiving, patient advocacy knowledge and availability, and much more.

I can say it’s my passion for helping – whether my parents and anyone – that finally moved me to get this blog going! As a fully engaged caregiver and patient advocate for both parents, I’ve experienced so much that I feel people can benefit from knowing about – to help their own journeys. Maybe in one blog post I can help them understand they aren’t alone as a caregiver or patient advocate – I know how that feels. Maybe in another post I can provide actionable information for how to advocate for their loved one that helps their situation. Maybe yet in another post I can share the challenges of trying to find balance in life – not easy! Of course, so much more than all of that to share.

Above all, my hope is that even in the slightest ways whatever I share will help – make their lives and those of the people they are caring and/or advocating for a bit easier. That said, it’s important that I don’t go on this 1 Day 1 Week journey alone.

1 Day 1 Week invites all caregivers and patient advocates to submit blog entries!

Share stories about you and your experiences – and importantly how your exceptional life as a caregiver and/or patient advocate has had an impact on you. From the challenges, sacrifices, and heartbreak to the love, beauty, and personal growth.  

As I finish this momentous initial blog post (it feels like that), it’s important to revisit the goals of 1 Day 1 Week, so everyone understands the intention is:

  1. To help people who haven’t walked in the shoes of a caregiver or patient advocate to understand on a deeper level what those experiences are like on a daily and weekly basis, and how it has impacted their lives – with the hope that will help build bridges within families, communities, and the world.
  2. To provide an ongoing public journal from caregivers and patient advocates, that helps others in those roles to feel understood, encouraged, validated and maybe even celebrated.

Let’s make the world a better place with greater understanding, together!

In kindness,

Todd “TJ” Keitz

Note 1: 2020 estimate of unpaid family caregivers in the U.S. is 53 million; 21% of U.S. adult population who are acting as a caregiver to a loved one. (Source: Caregiving in the U.S. 2020 – a National Alliance for Caregiving (NAC) and AARP survey looking at family caregiving in the United States.)

Note 2: Please review the blog Terms of Service and submit your blog entries to Blog entries are reviewed by our team for adherence to the Terms of Service and to determine the possibility of your story being posted. Please note that due to various factors, including volume of stories submitted, bandwidth on our end, level of appropriate content etc., we will either accept, deny or provide feedback to consider before resubmitting your story, if you choose.

Note 3: Thanks in advance for thinking about writing a story. Your voice is important for all caregivers and patient advocates to hear. If you simply don’t have the time to write a guess blog post, we invite you to consider sharing a reply/comment to one of the blog stories already posted. You can do that in the form below most of the stories that are/will be posted.