Have you ever attended a conference that was unlike any other?

A conference that broadened your understanding in ways you never imagined?

A conference that so deeply affected you that you’re going to be a better person because you were there?

The recent Afro-European Medical Research Network (AEMRN) Conference was such an event for me.

I traveled to the United Nations Palace in Geneva, Switzerland, to deliver a speech about caregiving at AEMRN’s annual meeting. Whatever I may have contributed to the agenda, it was returned tenfold to me.

I met incredible professionals who are working diligently to promote health-related causes in Africa. I wrote a close-up about one of them here. Everyone I met at AEMRN is devoting their time and their resources to benefit those who struggle under conditions of poverty in Africa.

I learned so much from the other conference participants about the African continent, culture, and challenges. I also learned about what it means to care.

I was uplifted by my many personal conversations with people of wisdom, resilience, and authenticity. I honestly felt as if I had joined a tribe. Dr. Christian Sesay told me that the warmth extended to me was not unusual. “When you go to Africa, they roll out the red carpet for you,” he said.

Dr. Sesay proceeded to share a couple of African proverbs, which I’m still contemplating, days later. One of those proverbs is the title of this post. He offered the proverbs to me as a gift, not a material gift but a spiritual gift, a proverbial application of insight into my own life circumstances. I believe I will carry his gift with me forever.

When humans genuinely care for one another, connections are made that can penetrate perceived social barriers such as race, nationality, and even language. Caring is quite possibly the most universal of all languages.

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Sometimes when life gives you lemons, you make lemonade.

I can honestly say that I never imagined I’d be traveling to Las Vegas to give a keynote speech on the subject of caregiving and receive a “Top 100 Healthcare Leaders” award. But that’s exactly what happened last month.

How did it happen? It’s a story of something sour that led to something sweet.

The Bitter

Nearly twenty years ago, my mother-in-law got a brain tumor. She was too young for a death sentence, but there it was, and we had no idea how it was going to impact our lives.

I was working in national healthcare policy as part of the Disabled and Elderly Health Programs Group of the federal Medicaid program at the time. Truthfully, I didn’t have a clue about what it meant to be elderly or disabled until my mother-in-law’s cancer emerged.

After a surgeon cut open Mom’s skull and removed the golf-ball-sized mass on her brain, Mom needed a place to recover. So she moved in with us to get a couple of weeks of rest.

She stayed with us for a couple of years. Mom underwent radiation and chemotherapy while in our home. Thanks to miraculous treatments, Mom’s cancer went into remission. She lived for five and a half years after her original diagnosis, but her brain was in steady cognitive decline for the rest of her life. Mentally, Mom was slowly becoming a vegetable.

As a result, for five and a half years, my wife and I served as caregivers for her mother. It was an extraordinarily unexpected and protracted and difficult thing to do, especially when trying to raise four young children at the same time.

Eventually Mom’s cancer returned with a vengeance, and we were thankful she died before her mind had entirely disappeared.

The Sweet

A year after my mother-in-law passed away, I changed the course of my career to help people in similar situations. I left Medicaid to become the owner of a home care company. In this rewarding role, I was able to assist families who were experiencing challenges incidental to age, illness, disability, and end of life care.

I could relate to every family we served because of my own experience, and I knew that our team was making a difference. As care providers, we offered welcome relief to family caregivers who were struggling to get by.

It wasn’t until I studied caregiving as a phenomenon of social science, however, that I came to understand why caregiving is so hard. The insight I gained from research was nothing short of revelatory because it explained, years later, the underlying challenges my family had faced with my mother-in-law’s condition.

Instead of providing a few hours of respite to family caregivers, today I share knowledge that changes the way people interpret the caregiving experience. It’s illuminating to talk about things experienced but not explained, things visible but invisible, things sensed but not expressed. Caregivers and care receivers understand what I’m talking about.

After a life and career redirected by caregiving, it’s reassuring when someone says, “You made a difference in my life. Thank you.” That’s exactly what happened in Las Vegas last month. What once was sour has become sweet.

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Today I had the privilege of speaking in New York City at the Annual Conference of the Interagency Council of Developmental Disabilities Agencies Inc. (IAC). IAC exists to help make a better world for people with intellectual and developmental disabilities living throughout New York State.

Throughout the day, I found myself remembering my days working at the Centers for Medicare & Medicaid Services. It has been over a decade since I interacted so extensively with professionals working at agencies serving people with intellectual/developmental disabilities. For the last decade, my focus has been on providing services to the aging population.

Provider Issues

Today taught me, however, that there are many similarities between agencies serving people with disabilities and agencies serving the aging population. For instance, here’s a list of a few of the issues we discussed today:

• Recruiting and retaining direct support professionals while there is a care workforce shortage
• Adapting to financial constraints imposed by value-based reimbursement models
• Complying with regulations that impact service delivery and administration
• Fostering an organizational culture that promotes the hallmarks of care: empathy, compassion, judgment, and reliability
• Confronting the social stigmatization of those who receive care
• Providing consistently outstanding service to clients
• Generally “doing more with less”

The truth is that every one of the above topics could have been extracted from a conference of providers serving the aging population, whether the industry is hospice, home healthcare, nursing homes, or the like.

My Favorite Moment

My favorite part of the day was the performance of the Astoria Heart & Soul Dancers and Movers. This group of adults with intellectual and developmental disabilities braved the traffic and traveled across New York City to take the stage and dance for us.

Wearing ill-fitting tutus and chasing the music’s rhythm, this distinguished group gave everything they had in a performance that was choreographed, energetic, and heartwarming. They circled the stage in a collective jive, but they also allowed the superstars to take the spotlight individually to show off their most impressive moves.

Watching them brought tears to my eyes.

When the dancers left the stage, the emcee emerged. “There’s no disability in personality,” he said. “And there’s no disability in artistic expression.”

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Today I had the privilege of delivering the keynote address at Beloved Foundation’s REACH Oncology Symposium at the University of California Riverside. Attendees were from oncology-related organizations, including healthcare providers and advocacy groups, with professional backgrounds in nursing, social work, and patient advocacy.

Regardless of organization or official role, it was apparent that each person in attendance is passionate about helping cancer patients. Most (if not all) have a personal connection to cancer that prompted them to do this work. While the Symposium didn’t include patients, I could easily see the commitment these good people have to providing relief and assistance to patients and their families.

As a bit of an experiment, I asked attendees to turn to the “neighbor” sitting next to them and describe the work role that prompted them to attend today’s meeting. After a minute of discussion amongst themselves, I invited the entire group – by show of hands – to share if the “neighbor” talked about their role in terms of others or in terms of themselves. Every single attendee spoke of what they do in terms of other people.

I wasn’t surprised by the show of hands. People who enter caring professions usually have altruistic motivations and find intrinsic satisfaction in service to others.

Often these most admirable qualities are also what lead caregivers to prioritize the needs of others over their own personal needs. An unfortunate and unintended consequence can be compassion fatigue – a state of physical, emotional, and/or spiritual depletion associated with caring for others.

In the ensuing discussion, we talked about the importance of not only caring for others but also caring for yourself. It’s not selfish to acknowledge you have needs. Caregivers are always more effective if they nurture body, mind, and spirit, recharging their personal batteries and developing the resilience to carry on for those who depend on them.

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