A Roadmap for Navigating Alzheimer's and Other Dementia Caregiving with Sue Ryan and Nancy Treaster - Episode 144

Have you ever felt that fleeting moment of relief when a doctor finally gives a name to your loved one’s condition, only to be immediately hit by a wave of panic asking, "Now what?"

In this powerful episode of the Caregiver Relief Podcast, host Diane Carbo sits down with Sue Ryan and Nancy Treaster, creators of The Caregiver’s Journey. Colleagues and friends for over 35 years in the software industry, Sue and Nancy found themselves walking strikingly similar paths: caring for fathers, father-in-laws, and husbands with dementia while managing demanding careers.

Frustrated by a medical system that offered diagnoses but no practical direction, they joined forces to create a roadmap that moves caregivers from overwhelmed to underwhelmed. 🗺️ ❤️

🎧 What You’ll Learn in This Episode

This episode is packed with candid advice, practical strategies, and a message of hope. Here is what we cover:

1. The Reality of the Diagnosis

Sue and Nancy discuss the "sinking reality" that sets in after the initial relief of an explanation fades. They highlight the gap in the healthcare system: you get a medical diagnosis for your loved one, but "crickets for the caregiver" regarding what to prioritize or how to manage daily life.

2. Massive Acceptance and Radical Presence

Sue introduces two transformative frameworks for caregivers:

• Massive Acceptance: Accepting exactly what is happening in the moment without judging yourself, the situation, or your loved one.
• Radical Presence: Being fully in the "now" to make wise decisions and find small moments of beauty amidst the challenges.

3. The Working Caregiver's Dilemma

Both guests were working professionals during their caregiving journeys. They share crucial advice for working caregivers: Self-identify early. By letting your employer know about your situation sooner rather than later, you can often find support and flexibility, rather than looking like a distracted employee later on.

4. Creating a Village

Nancy and Diane discuss the necessity of building a care team. You simply cannot do this alone. They discuss how to overcome the guilt of asking for help and why you should accept every offer of assistance—whether it's a ride to the doctor or just sitting with your loved one while you shower.

5. A Roadmap for the Journey

Nancy explains how they created The Caregiver’s Journey to filter out the noise. Instead of drowning in Google searches, their roadmap helps you focus on exactly what you need to know right now, based on where you are in the disease progression.

📝 Episode Outline

• Welcome and Introduction to Sue Ryan and Nancy Treaster.
• The moment life changed: Hearing the word "Dementia."
• Navigating different diagnoses (Parkinson’s, FTD, Alzheimer’s) but similar caregiving challenges.
• Explaining Massive Acceptance and Radical Presence.
• Advice for the working caregiver: Don't hide your journey.
• Overcoming the "Shoulds": Dealing with guilt and judgment.
• Diane on the "Silver Tsunami" and the broken healthcare reimbursement system.
• How to access the Navigating Dementia Caregiving Roadmap.

💡 Key Quotes

"Knowledge creates confidence. Confidence gives you peace of mind. And when you have confidence and peace of mind, you are a much more patient caregiver." — Nancy Treaster

"Massive acceptance means I accept exactly what is in the moment. I don't have to like it. I don't have to agree with it... I just have to accept it without judgment." — Sue Ryan

"You are the most important part of the caregiving equation. Without you, it all falls apart." — Diane Carbo

Resources

• The Caregiver's Journey: Visit thecaregiversjourney.org to access their podcast, blogs, and the Navigating Dementia Caregiving Roadmap.
• Facebook
• Instagram

🎙️ Why You Should Listen

If you are feeling blindsided by a recent diagnosis or burnt out by the day-to-day realities of dementia care, this episode offers a lifeline. Sue and Nancy don't just offer sympathy; they offer a strategy.