VOICES: What I Wish I Knew: Massive Acceptance and Radical Presence Changed My Caregiving Journey

By Sue Ryan

Sue Ryan writes about caring for her father, Hal Armstrong, and her husband, Jack Ryan, throughout their dementia diagnoses, and the moment she realized that holding on to who they used to be was keeping her from caring for who they were in this moment.

Sue Ryan is a leadership and change strategist, international best-selling author, and caregiver advocate. For more than 40 years, she has navigated dual roles as a business leader and family caregiver. Sue has cared for multiple family members through their dementia journeys, including her father and husband. Sue is the founder of Sue Ryan Solutions, where she trains people in leadership. She and her business partner, Nancy Treaster, founded The Caregiver’s Journey. Through podcasts, blogs, and guides, they provide practical tips and candid conversations for dementia family caregivers.

“Massive acceptance and radical presence give us the gift of living each moment to its greatest potential.” Sue Ryan

It was dusk. My dad and I were sitting quietly, relaxing on the porch of my parents’ home in South Florida. Suddenly, he jumped up from his chair and said: “Walk the dog.” My dad had frontotemporal dementia with primary progressive aphasia and had lost much of his ability to communicate.

In an instant, we’d shifted from calm to chaos. Our normally peaceful springer spaniel, Cricket, leapt up, startled, and began jumping around as my dad clipped on her leash. I was startled too; it took me a few seconds to get my bearings!

Their porch had two doors — one that went out onto the sloping grassy hill outside, the other to a smoothly paved path. Dad was headed to the door to the grassy hill. The light was fading. The grass was rough. The dog was pulling. I knew instinctively this was dangerous.

I ran to him, stood in front of him, pointed in the other direction, and said, “Daddy, Daddy, let’s go this other way, it’s safer.”

He kept walking.

I tried again. “Please. Let’s go this way.”

Then something happened that shocked me. My daddy, the kindest, gentlest man in my life (who had spanked me when I’d deserved it and had never laid a hand on me using force otherwise) pushed me out of the way to go out the door.

For an instant, I froze in shock. Then, I followed closely, scanning every step, ready to grab the leash if he stumbled. We made it to the path safely, but none of us were calm. Not my dad. Not the dog. Not me.

That night, I sat with a mix of emotions. I had let my daddy down. He had always been there for me. I was angry at what the disease was taking from him, emotionally exhausted from the experience, and concerned about how unprepared I was.

I’d accepted my dad had a type of dementia since he was diagnosed in 2008, and yet I hadn’t completely accepted it. I was judging what he was doing through the lens of who he’d been all my life. I was present to what he was trying to do, and yet I wasn’t fully present. If I had been, I would have known he was already doing what he had access to.

In that moment of reflection, massive acceptance and radical presence revealed themselves to me.Massive acceptance is accepting exactly what is, 100%. We don’t have to like it. We don’t have to agree with it. We don’t have to understand it in the moment. We just have to accept this is exactly what is, and accept it without judgment — of ourselves, the situation, or others.

Radical presence is staying fully present in this moment. We’re not wishing it was the way it had been, and we’re not fortune telling into the future.

Through massive acceptance and radical presence, I let go.

I let go of wanting the familiar past. I accepted fully and completely Daddy didn’t have access to how to make the wisest choices on his own anymore. 

With massive acceptance and radical presence — and without judgment — I journey now as the observer, not the judge. Being fully, radically present, I have access to the potential and possibilities in each moment, moment by moment. I’m able to make the wisest choices in the most challenging moments, I’m able to see beauty in the tiniest moments, and I’m able to stay at peace in each situation.

A few months later, my husband Jack was diagnosed with a type of dementia.This time, because of what I had learned with my dad, our journey began differently. When we sat in the doctor’s office, we were calm — not because the diagnosis was easy — because we fully accepted and were fully present with whatever came next.For as long as Jack had the capacity to choose, he chose acceptance. When he no longer could, I chose it for him.Living this way didn’t remove grief, it stopped me from layering fear, frustration, and resistance on top of it.When Hurricane Irma threatened Southwest Florida in 2017, Jack’s diagnosis was far enough along that I knew I could put us both at risk if we stayed. With massive acceptance, I chose to evacuate immediately. The house and its contents were ‘stuff.’ Our safety was my top priority. As I closed the front door, I said goodbye to them and was at peace.

Radical presence allows me to feel joy in the simplest, the tiniest of moments. In Jack’s memory care community, one resident who could no longer communicate, tapped her foot ever so slightly to a special song being played. This tiny movement became a celebration with the other caregivers. I chose to focus on the beauty of this tiny movement and have a positive experience, rather than focus on what she didn’t have access to.

Living from massive acceptance and radical presence, supports shifting from feeling frustrated, overwhelmed — and, yes, sometimes frightened — to confident, balanced, and supported. They help you feel empowered to navigate your journey with your loved one.