E243: Navigating Emergencies and Inpatient Care As A Caregiver Advocate

Welcome, dear friends, to another episode of the Caregiver Cup Podcast! Thank you for taking the time to listen. My hope is that you gain inspiration, tips, and insights from this episode, filling your cup to keep going on the challenging journey of caregiving.

Sharing My Recent Experience

Last week was a whirlwind of emotions and challenges as a caregiver. On Tuesday, my loved one had labs, an oncology appointment, and chemotherapy. The drive home didn’t feel right—he slept most of the day but complained of a nasty headache at 4 PM. By 7:30 PM, he felt nauseous and could barely hold up his head. Despite taking premeds, these symptoms persisted, prompting me to call the triage nurse due to fever, chills, and an elevated heart rate. This led us to an unexpected trip to the ER.

The ER Experience

At the ER, the process was intense:

1. Check-In: One nurse took vitals and performed an EKG, revealing a heart rate of 145.
2. Emergency Procedures: Two EMTs inserted IV lines, drew blood cultures, conducted a urinalysis, nose swab, and chest X-ray.
3. Doctor’s Evaluation: The doctor explained all the testing, asked pertinent questions, and reviewed the results:
   • Negative Results: No COVID, influenza A or B, or RSV.
   • Abnormal Findings: Tachycardia on the EKG and signs meeting the criteria for sepsis from a bacterial infection.

The doctor consulted with the on-call oncologist, recommending antibiotics, fluids, and admission for observation.

Transitioning to Advocacy

As a caregiver, I switched into "go mode," which highlighted how advocacy skills shift in different settings:

• Phone Advocacy: Calling the triage nurse required having all essential information ready—thermometer readings, pulse oximeter data, blood pressure readings, and a list of medications.
• Preparation: I initially struggled to find the right phone number, but once located, I saved it for future emergencies.
• In the ER: Nurses asked about prescriptions, vital statistics, advanced care directives, and DNR orders. Having all paperwork in a “grab and go” bag was invaluable, especially with spotty cell reception.

The Importance of a Grab and Go Bag

I keep a grab and go bag ready, a practice I started with my mom. Here’s what I include:

• Essential Information: Contact numbers, prescriptions, doctor names, diagnoses, and treatments. If you prefer digital over paper, take a photo or screenshot from the latest visit.
• Chargers: Extra chargers to ensure devices stay powered.
• Snacks and Hydration: Granola bars, water bottles, and nuts.
• Hygiene Items: Lotions, lip balm, hand wipes, nail clippers, band-aids, deodorant, toothpaste, toothbrush, gum, Tums, Tylenol, scarves, and extra socks.
• Entertainment and Essentials: A notebook, pen, and a book.

I keep this bag behind my bedroom door, ready for immediate use.

Admission and Inpatient Care

By 2 AM, my loved one was admitted. The admission process reiterated the importance of thorough preparation:

• Repeated Questions: Medications, doctors, diagnoses, and medical history were reviewed again by the nursing staff.
• Documentation: All vitals were recorded, and my loved one was connected to the inpatient team.
• Early Rounds: By 7 AM, the inpatient doctor was taking more blood and assessing the situation.

Key Lessons and Tips for Caregivers

Advocacy Tips:

1. Know Your Loved One: Understand their treatment, medical history, and behaviors.
2. Prepare Questions: Write down questions in advance. I asked about sepsis and the tests being conducted.
3. Research: Utilize waiting time to look up information relevant to the situation.
4. Stay Organized: Keep all necessary information and documents easily accessible.
5. Communication: Get the nurse station’s phone number and provide your contact information. I also Facetimed my loved one to stay connected.

Self-Care Tips:

1. Take Breaks: I managed to go home for a few hours when my loved one was more stable.
2. Nutrition: Focus on eating well. I now pack a shake cup with protein powder to maintain my energy.
3. Rest: Ensure you get adequate sleep whenever possible.
4. Emotional Support: Maintain communication with family and friends. Utilize family texts and Facebook groups for updates.
5. Lean on Your Support System: My sister was a lifeline, handling calls during the late hours.

Listener Insights and Additional Tips

Thank you to everyone who reached out with messages and emails during this time. Special thanks to Kim in California for her valuable insights:

• Hospital Rounds: Plan to be at the hospital between 8 and 10 AM when the hospitalist makes rounds. This is the best time to advocate, get answers, and coordinate care.
• Utilize Room Resources: Read the welcome folder in the patient room. I discovered aromatherapy and acupressure activities that helped alleviate physical and emotional distress for both the patient and caregiver.

Conclusion

Denis was discharged on Friday, feeling much better after ruling out sepsis with multiple cultures confirming a bacterial infection likely caused by chemotherapy. This experience reinforced the vital role caregivers play in the healthcare journey of their loved ones.

Your Cup Be Steadily Replenished

Remember, as caregivers, we are the eyes and ears for our loved ones, and it's not an easy task. I hope these tips and insights help you navigate similar situations. If you have more tips to share, please click the “Send Cathy a Message” link, and I’ll feature them in next week’s episode.

Until next time, my friend, have a good week and don’t forget to find small moments of time for yourself.

With love and gratitude,

Cathy