075: Serious Illness or Injury: The Resources We Need to Manage it All

Is anyone ever really prepared to deal with a severe illness or injury? Most people find themselves unprepared when thrust into the patient or caregiver role, understandably so. Roberta Carson knows first-hand just how overwhelming it can be to make the immediate transition. Her experience caring for her teenage son, Zachary, during his 27-month battle with terminal brain cancer, inspired her to start Zaggo, a nonprofit organization. She created the ZaggoCare System to provide patients and family caregivers with the information and tools needed to better manage a care journey in critical illness and injury.

In this episode, Kirsten sits down with Roberta to unpack the strenuous care journey for a loved one battling terminal brain cancer. Roberta admits she was unprepared and a bit unorganized in the first weeks following her son’s diagnosis. However, she quickly realized that everything her son experienced, from treatments to side effects to doctor’s visits, must tediously be documented. Roberta and her husband were responsible for coordinating his care to ensure Zach received the best care possible. There was an overwhelming amount of information to keep track of and new care procedures to learn at nearly every turn —with little or no guidance from providers.  Nobody asked them how or if they could manage. It just had to be done.

After her son passed away, Roberta understood how desperately patients and families need practical, easy-to-use information and tools to stay organized and in control. We are so sorry for the tragedy that Roberta and her family faced. And at the same time, so thankful for her strength to develop Zaggo. What a gift! The ZaggoCare System is an invaluable resource that will help ensure the best care possible while allowing for more time spent with loved ones. We hope you’ll consider purchasing the ZaggoCare System if you, a loved one, or a friend face a serious illness or injury. Now it’s time to listen in and share Roberta’s story with your friends and family. Her experience not only impacts those with illness or injury but provides valuable medical advocacy advice.

Big Three from Episode #075:

1. If you, or a loved one, are dealing with a serious illness or injury, it’s critical to stay as organized as possible from the very beginning. Not sure where to start? Consider looking into ZaggoCare. It’s a complete system that helps you know what to do every step of the way.
2. Remember, you are your best advocate. Ask questions, write everything down, even record appointments if possible.
3. People assume that every doctor you meet will have a full report of your medical history and what’s going on. In reality, they don’t. You must effectively communicate with your medical providers.

Time-stamped Show Notes:

3:07 Roberta Carson discusses her journey caring for her terminally ill son, who was diagnosed with terminal brain cancer.

5:03 Roberta opens up about the transition from being a mother to a caregiver for her son.

8:52 There is a lot to process and manage when a loved one is sick. Listen in to hear how to be best prepared.

11:56 Having a multitude of side effects is not uncommon during chemo. The problem is it often leads to needing even more medications.  Start listening here to learn more about how Roberta kept track of her son’s symptoms and medications.

12:18 There is an assumption that specialists keep track of everything there is to know about your medical history, but they don’t. More often than not, it’s up to the caregiver to keep each doctor updated. Listen here for more insights from Roberta.

12:45 This is why a notebook will be your best friend.

17:48 Not sure what to ask your doctors? Get overwhelmed and forget all your questions? You’re not alone. Roberta created the perfect resource guide, so patients and caregivers know exactly what to ask. Listen here to learn more!

19:51 We are so sorry for the tragedy Roberta and her family faced, yet so thankful for her strength to develop ZaggoCare. We’re honored to share her story and talk more about ZaggoCare starting here.

21:48 Zaggo is a fully immersive resource to help efficiently navigate the medical world for yourself or a loved one. Not only does it include a comprehensive guidebook, but it also includes organizational tools. Start listening now for all the details.

25:55 We are so honored that Roberta provides access to a free resource for all of you listening, 31 Cancer Management Tips You Need to Know. If you are facing this journey, follow this link to get your copy of this invaluable guide.

28:43 The question of today’s Ask Kirsten segment: If a loved one is in a skilled nursing home facility and receiving Medi-Cal to pay for it, is it true that they don’t need to do any further estate planning because their only asset is their home, which is exempt under Medi-Cal?

30:56 Roberta Carson discusses her weekly blog posts that can be found on Zaggocare.org every Monday.

33:04 Live Q&A: Roberta, do you have other children? How did this impact other family members?

34:07 Live Q&A: Does your guidebook provide tips on dealing with insurance companies, either on getting care authorized or on dealing with the billing? Jump here to Listen to Roberta’s answers!