Leadership Lessons From The Frontlines Of Alzheimer’s

Last Updated: April 16, 2020

Five Mantras from the Frontlines of Memory Care

This article originally appeared in Forbes on June 17, 2019. Please click here to view original article.

Alzheimer’s is a brutal, cruel disease that steals people from their loved ones and themselves as spouses and children watch. My husband is one of the millions ravaged by this merciless thief. My husband’s brother and his wife traveled this path before us; we walked it with them. Now, my sister-in-law stands vigil beside me.

When I am not in the actual presence of this thief’s devastation, I am thinking about it, managing the brain-numbing details and seeking support, edification and understanding. The greatest insight, however, comes in the lonely moments of reflection and the times when only the most courageous, loving people are willing to sit with me, saying nothing because there is nothing to say.

Yet there is wisdom to share. Here are five mantras from the frontlines of memory care that I believe can enlighten boardrooms, offices and executives:

Presence is powerful.

We are so busy — running, hustling, swiping right, scrolling up. Yet, for those impacted by Alzheimer’s, just being is enough, though it might seem counterintuitive; over-stimulation can be disastrous. A quiet presence fosters a deep sense of service and mindfulness, necessary in times of transition, reflection, growth and loss. Being present is not about words; it is about the deep soul work that communicates, “I am here with you.”

What would leadership be like in our organizational settings if the idea of holding sacred space was practiced at times, instead of rushing in with lectures and solutions? I believe taking a few moments to slow down and think is deeply transformative for leaders.

People with this disease are often deeply aware (at times) of what was left undone. As the thief does its work and communication becomes difficult, there are still moments of jaw-dropping emotional and spiritual clarity.

It is never too late.

People with this disease are often deeply aware (at times) of what was left undone. As the thief does its work and communication becomes difficult, there are still moments of jaw-dropping emotional and spiritual clarity. Perhaps it is because there is little left to lose for the one whose brain is being destroyed. We are heirs to karma. We sow what we reap. Our derailers work out with weights. If people with this relentless disease want to clear the decks, what could possibly be the downside for the rest of us in making amends and doing our emotional work now before disaster strikes? We die the way we live: emotionally, spiritually, relationally. Don’t leave anything undone or unsaid that needs to be shared.

This is why I believe leaders should strive to be vulnerable with those they trust. Be straightforward by saying, “About the time I …” Take ownership of mistakes gone by that need to be acknowledged. From my perspective, this is some of the most important work for leaders. In my experience, your teams and colleagues (and those at home) will be hands-down grateful for your honesty.

Denial destroys.

The disease does its thing. There is nothing to be done except the hard work of acceptance. Acceptance allows us to stop chasing perfection and embrace presence. Acceptance allows us to be in the now and not the regret or the “what-ifs.”

This is a valuable lesson for boardrooms. What would the inner sanctum be like if we were to practice radical acceptance, instead of trying to dance as fast as we can to outsmart reality? It is acceptance married to hope that gives us the resilience to believe that a higher order is at work. It is this very acceptance that gives us the courage to change what we can change while we practice gratitude for the higher purpose being revealed.

Joy comes in moments.

My husband used to say that my middle name, Joy, was apropos. I work hard now in the midst of soul-sucking grief and overwhelm to go toward the joy, even on days that the fetal position seems like a reasonable option. This disease is a moment-by-moment process — a reminder that life is just a moment-by-moment unfolding, and therefore, so is our work.

I believe our teams and colleagues would engage differently if we planned well and were totally in the moment, each moment. This includes the moments of struggle and challenge, as well as the moments of connection and success. By celebrating when things are good and accepting that things don’t always go according to plan, there could be an enhanced sense of engagement, which, of course, strengthens all the business metrics we chase.

Do the self-care basics.

Rhythm and routine provide a sense of security and consistency. I’ve found that people — all people — tend to do better when they know what to expect, that someone has their back and that there is a dependable flow to their days. Sometimes, those with Alzheimer’s get frightened and agitated because even in the midst of routine, fear grabs hold in a primitive way. Isn’t that true for all of us?

This is why I believe it’s critical for leaders to do the basics and strengthen their foundation: sleeping enough, eating healthy foods, drinking water, having a spiritual practice that provides groundedness and being surrounded by people who nourish you. How might your career thrive if you built these cornerstones of positive energy and self-care and stopped giving energy to anything else? Think about what fuels you and makes you a better leader — and make time for it while also being mindful of how your self-care impacts and inspires those around you.

Before I started to write about this process, I asked my husband if he would be OK with me doing so. He said to me on a day when he was lucid, “Tell the story — our story. If it helps you or someone else, then know that it helps me.” In a moment of heart-piercing generosity, he was that leader who serves lovingly and wisely and gives from his own vulnerability. He was that leader who knows who he can trust with his story and his moments. A leader who has the serenity to accept what he cannot change, the courage to change what he can and the wisdom to know the difference.

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