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Music, Oh Sweet Music: Soundtracks For Caregivers & Life
MUSIC… As described in Britannica, “it is an art that, in one guise or another, permeates every human society.” At the same time, it would not be a stretch to say that in some way, on some level, music permeates the soul of every human being. When you think about it – no matter what genres we enjoy, music is an indelible part of our lives from the time we are kids and will be until the day we leave this earth. We are outright moved by the power of a favorite artist’s voice, lyrics, rhythm, and melodies. Live performances, streaming services, CDs, vinyl records…we have many mediums to choose from. Over and above that, music is integrated within a myriad of things that touch…
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Caregiver Trends In The U.S. Indicate Grave Concern: Figuratively Speaking
1 Day 1 Week is two months old this weekend and it will be the first time we get to experience November’s National Family Caregiver’s Month with you. This is a perfect time to review the U.S. caregiving landscape. Before doing so, I want to share with you some exciting news. As I’ve mentioned in previous email updates and weekly blog posts such as last week’s Music: Uplifting Caregivers & Patient Advocates, One Song At A Time, two new features are being developed. Well, we’re ahead of schedule with the first one! We’ve pushed to make that happen and it will appropriately launch during National Family Caregiver’s Month. This new feature is an ongoing podcast series focused on anything and everything, related to caregiving and…
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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…
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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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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…
