2023 to 2024: One Year Later
It's hard to believe that it has been one year since my mom, Peg, began her health journey with Polymyalgia rheumatica, Valley Fever, and sudden complications. It has been a rollercoaster of emotions, but I’m happy to report that she is home and on a miraculous road to recovery. Reflecting on this journey one year later, I want to share what I wish I knew going into a complex medical emergency with a family member. I hope this kind of thing never happens to you, but if it does, I’ve added some takeaways to help you and your family be better prepared.
Peg Reed’s Story
Last year in 2023, my mom Peg Reed was diagnosed with Polymyalgia rheumatica, a form of Rheumatoid Arthritis, and began treatment. However, in August 2023 she contracted COVID and didn't bounce back. On October 26, she ended up in the hospital with pneumonia. After many ups and downs, we learned that she also had Valley Fever, which had caused scar tissue in her lungs and made it difficult for her to breathe. It was a scary time.
For those of you who stayed tuned on CaringBridge, you can't imagine how much your support and comments meant to us, especially my mom, through the tough times. She loved hearing your comments when I read them to her. It was a tough holiday season last year and so I look forward to this 2024 holiday season that much more.
Thinking back on the journey for our family - the decisions we made and chose not to make - we have learned some valuable lessons. We thought we had done everything we could to prepare for a situation like this. As we head into a time of year for cherishing our family, I want to focus on what you can do to prepare for medical situations and interventions when it comes to your wishes and those of your loved ones.
Tough Choices
During my mom Peg’s medical crisis, I quickly learned the importance of swift decision-making and preparation. As a financial advisor accustomed to planning and strategy, I found myself in a deeply emotional and challenging situation that required me to prioritize my mother’s healing above all else. Balancing her Do Not Resuscitate (DNR) wishes with our desire for her to continue fighting this mysterious illness was one of the toughest things I've gone through.
Mom’s sudden illness came as a shock, leaving our family scrambling to make choices amidst an emotionally charged environment. Reflecting on those challenging days in the hospital brings back a torrent of emotions. The decision to intubate my mom had to be made swiftly, and I regret not calling my dad. He had left to rest just hours before, and I didn’t want to disturb him. I wish I had reached out because having him there during such a crucial moment would have provided solace. My brother rushed in from out of town, bringing with him a lot of questions about our mom’s wishes and necessary documents that I didn’t have with me. Though we ultimately didn’t need them to find the right path, the anxiety of being unprepared was unsettling.
As events unfolded, there were moments of tension and fear, particularly when questions arose about intubation and life support. When my mom struggled with sedation and the medical staff pressed her with critical decisions, I felt compelled to intervene, knowing she wasn’t lucid enough to respond.
My brother, dad, and I were united in our choice to support her temporary need for a ventilator, despite her DNR, to give her the chance to heal. She was in a bad way due to the lack of necessary oxygen getting to her brain, and wasn’t in a place to respond to the questions nurses and other practitioners were asking her. I wished that we had power of attorney, but her illness came on suddenly.
Fortunately, she didn’t require long-term ventilation, which aligned more closely with her wishes. As we prepared for her transfer to the rehab facility, questions lingered, indicating how vital it is to have clear communication and documentation ready.
We also wish that we had known a lot more about what to expect when she came off the ventilator. The first time they got her out of bed, it took four nurses to get her out of bed, and nobody prepared us that she wouldn't be able to walk or stand on her own.
We should have realized that being intubated and sedated for as long as she was, she was going to lose some mobility, but she literally couldn't even raise her hands up. None of us were prepared for that.
Her move to a rehabilitation facility marked a crucial step in her journey, and the care she received there played a pivotal role in her recovery. Mom was a great patient and showed remarkable resilience.
What I Wish I Knew
Looking back, I recognize several key lessons that emerged from this ordeal. First, the importance of having a medical directive readily available to family members is invaluable. This document provides essential clarity and aligns everyone's actions with the patient's wishes during uncertain times. Additionally, designating a trusted decision-maker is crucial—someone who can confidently oversee healthcare decisions when the patient is unable to do so. When multiple family members are making those decisions together, it is key to stay in touch with each other and keep cell phones on and fully charged.
What You Can Do to Be More Prepared
Preparation is vital when facing a health crisis. I strongly encourage families to engage in honest discussions about medical directives and healthcare preferences. Although these dialogues can be difficult, they cultivate understanding and, ultimately, unity during emergencies.
Promptly addressing medical concerns is equally critical, as early intervention can significantly impact outcomes. Whether it's a small cold or something more severe, don't delay in seeking care.
- Have a medical directive and share it freely with family, especially those who might need to make decisions on your behalf
- If you’re interested in further guidance on creating a medical directive, please reach out to us for a referral.
- Have a clear decision maker for your health and wellbeing should you lose consciousness or capacity. List them as your emergency contact. Where possible, list two emergency contacts.
- Have conversations with your family members who you may not know their medical directives or preferences. These can be tough conversations to bring up, we know, but this is a good time of year to share what you’ve learned about our situation and have that tough conversation in a loving way.
- Get medical help early and often when issues come up; it’s not worth putting something off. If you feel off, get medical care. If you feel especially unwell, or unlike your usual self, bring someone with you who can be a crucial advocate for your care.
Medical Advocacy: Your Choice Matters
In the realm of healthcare, medical self-advocacy and having dedicated advocates by your side stand as pillars of effective treatment and recovery. Self-advocacy empowers patients to take an active role in their healthcare journey, promoting a greater understanding of their conditions and empowering them to ask pertinent questions.
This proactive approach is crucial, especially when navigating complex medical systems and ensuring that personal health preferences are honored. Equally essential is having someone who cares deeply about your well-being and can advocate on your behalf. These advocates amplify your voice, particularly during times when you may feel overwhelmed or vulnerable - or in my mom's case - not in her right mind due to oxygen deprivation.
Together, self-advocacy and external advocacy form a robust foundation for achieving optimal healthcare outcomes and ensuring that the medical decisions made reflect your true wishes.
Celebrating How Far Mom Has Come
Despite the hardships, there is much to celebrate in my mom’s journey. Her transition to a rehabilitation facility marked a new chapter filled with hope and determination. Her progress is a testament to the profound effect that well-informed, compassionate decision-making can have—not only on her life but on ours as a family. Her story, and my insights gained from this experience, serve as a heartfelt reminder that through preparation, support, and love, we can overcome formidable challenges.
There will always be a curve ball, but you can be more prepared by having key conversations with your family early and often, and I challenge you to do that this season. Thank you again for all of the love and support for the Reed family during that time and even now. We have the best clients and friends anyone could ask for.
