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The Road to Burnout City & Back: A Caregiver’s Perspectives & Practical Tips
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…
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A Drug-Induced Reflection, So To Speak
Three days ago, my mom began yet another drug – this one administered through subcutaneous infusion therapy at home. Before getting into the exasperating road that led to this situation, now is a good time to reflect on the overall topic of medication and share some insight. Along my mom’s Systemic Sclerosis (Scleroderma) journey there have been countless situations that have led to a myriad of drugs being prescribed, whether in an acute hospital setting or as an outpatient. “Myriad” is a gentle way of saying, I can only begin to tell you how many drugs (50, 75, or more), what they were, what the situation was, and what benefits (or harm) they brought to her. To this day, in each situation, there may or…
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Friends Are Found On Every Road
If you’ve read my previous posts, you know my caregiving/patient advocacy journey has been a roller coaster ride filled with unfathomable situations, lots of stress, and a full sway of emotions. While it’s certainly been challenging on many levels, there’s also been lots of beauty intermixed and I want to share one aspect of that with you today. I hope the day will be a lighter highway, For friends are found on every road. Can you ever think of any better way, For the lost and weary travelers to go. If you don’t recognize these words, they are the first lyrics from Elton John’s song titled “Friends” – and it’s spot on. To varying degrees, I’ve been a weary traveler on this caregiving/patient advocacy journey.…
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Scenes from a Son’s Life as Primary Caregiver/Patient Advocate: Chapter 2 – The Longest Hour
Hi again! I’ve been debating for the past few days — what topic to write about today. Should it be a specific caregiving or patient advocacy topic (e.g. getting comfortable with the unknown, hospital/clinic protocol, etc.), or writing another installment of “Scenes from a Son’s Life…” As you can tell from the title of this post, I’ve chosen the later and as usual will weave in various themes that could be their own topic – and may very well be someday. Before getting into this Chapter 2 of “Scenes…”, I want to share some exciting news (well, it seems to be) about 1 Day 1 Week. If you’re not aware, there was a soft launch of the blog to a very small audience at the…
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Scenes from a Son’s Life as Primary Caregiver/Patient Advocate: Chapter 1 – Real & Surreal
As Forest Gump (played by Tom Hanks) expressed, “My momma always said, ‘life is like a box of chocolates, you never know what you’re going to get.’” While we can debate the deep interpretations of that quote, on a basic level it’s clear the overall intent of momma was to convey that life is unpredictable – no matter how much we plan and move forward accordingly. Isn’t that true for all of us?! We’re born into families of all different kinds: socio-economic, geographic, ethnic, education, etc. No matter who we are, where we come from, where we are now in life, and what differences we have, there’s a need for connection on some level and a common thread that usually embodies who we are –…
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Alzheimer’s, Heartbreak & A Godsend
My mom turns 90 this month – a major milestone certainly worthy of celebration. So, my wife and I will throw a nice party for her with many of her relatives in attendance including grandkids, nieces, nephews, etc. Unfortunately, my mom won’t be there. Her trusty vessel of a body that has served her well and continues to be in amazing shape will be there, but the wonderful woman who we have all known as Nana is no longer with us. Diagnosed with Alzheimer’s disease five years ago, my mom has experienced a rapid decline in her mental acuity and is now fully in the throes of advanced Alzheimer’s. Anyone who has any familiarity with Alzheimer’s knows it is a hideous disease. I’m no expert,…
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Kidneys and Lungs and Heart, Oh My!
Well, after a soft launch of 1 Day 1 Week this past Monday (August 30) to a network of friends, some future topics that were requested included: Denial vs. Dealing, Handling the Unknowns, Self-Care, and Caregiver & Patient Conflicting Beliefs / Wishes. Those are among countless topics to write about as standalone blog posts and/or be interwoven into my overall blogging journey! For today, I’m going to focus on Kidneys and Lungs and Heart, Oh My! Did you catch the play on words from the Wizard of Oz? Whether you did or didn’t, it’s from the book/movie’s famous line “Lions and Tigers and Bears, Oh My!” that Dorothy said as she, the Tin Man and Scarecrow entered the dark, creepy forest. The correlation to being…
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Beginning of the Journey
How did your caregiving/patient advocacy journey begin? It can happen in different ways. From what I came to learn, the beginning of my journey was like millions of others who take on this role – it happened fast and without warning. In my case, Spring 2017. Prior to that, I had no thoughts that caregiving/patient advocacy was going to become a part of my life – changing it in every way! Having witnessed my grandparents being cared and advocated for by my mom 20-25 years earlier, I had some idea of what the role entailed. She would take them to appointments, handle various aspects of doctor communication, interpret situations to ensure the best possible care was being planned and received, and so much more. She…
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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…