“Is there such a thing as psychic exhaustion?” a friend I’ll call Shelley asks. She’s caring for a husband who suffered a stroke. He keeps falling. He’s depressed and angry. She’s having to do all the work they both once did. She sleeps as fitfully as a new mom, listening for him to try to get up, so she can rush to help before he falls again.

His condition is not improving. 

Shelley’s love and loyalty are real. So is her pain. Dwindling hope takes a toll, emotionally and spiritually. Resentment creeps in. Then she feels guilty.

I understand. I loved my parents and took care of Dad until he died. I loved my husband Jerry deeply for 56 years. I don’t regret a single day of caring for him at home. But when he passed after two years of increasingly demanding needs, I wondered if there was such a thing as Caregiver PTSD. 

Sure enough, it’s a real thing. Read about it here. Six years later I still have flashbacks and bad dreams.

Other friends have borne far more than I. One cares for a husband who lost both legs to amputation after a series of strokes and infections. He can’t sit up, talk, or feed himself. Three people I know tended to spouses with ALS.

Suggestions are plentiful but often unhelpful:

“Make time for yourself.” Thanks. Now tell me how. 

“Get outside help.” Good idea, if you can afford the $25 an hour it’s likely to cost, with a four-hour daily minimum. Night shifts (so you can sleep) are more.

“Use your long-term care insurance.” If you have it (We did). But the first 90 days were on us. Unpaid service doesn’t count. Jerry died in the final week of his 90 days, so we paid a lot and never collected a penny.

“Seek help from family members.” This would be a natural, but it assumes family members are willing or able to help. Either because of geography or lack of desire, they may be scarce. 

“Can’t you use assisted living?” In some areas the costs exceed $100,000 a year. Medicare doesn’t cover. Medicaid will pay after patients completely impoverish themselves by private pay care. And… the patient may resist leaving home.

What does help:

A support group led by a trained counselor. I attended one at Iona Senior Center in Washington, DC. for caregivers and patients with dementia. After an icebreaker together, the caregivers went with one counselor, the patients with another. My group included spouses and adult children caring for aging parents. People felt safe to let it all hang out – the darkness and the light. You felt heard and understood. Not judged.

A new story. My mother had Alzheimers and my Dad, who cared for her, had 4^th stage prostate cancer. When he fell and I had to fly to Florida, Jerry and I insisted they move in with us. My American friends said things like, “Are you sure you want to do that? Maybe you could rent them an apartment nearby?” 

But my Latina and Ethiopian friends all said, “Oh, you’re so lucky! I wish I could do that!” Some shed tears. It helped me see how I was culturally biased toward rugged individualism. I told myself a new story. 

Community. Let friends, neighbors, people in groups you belong to know your needs when they ask. Caregiving can be lonely and hard. This is not the place for a stiff upper lip. People often really want to help. Let them.

Faith, if you have it. “Jeanine,” an Iona group member who attends daily mass, said, “I’m peaceful. This is what God has called me to right now.” Margaret Hodge, an 80-something evangelical Christian in Oklahoma and an ALS spouse, was preparing her husband’s funeral when she received word that her grandson was struck by a train and was in a vegetative state. As soon as the funeral ended she drove to Tennessee to help with his care. Back home, she has opened her home to children, college students, and foreign young people. Giving herself is part of her faith.

I invite your stories of surviving caregiving and dealing with its inevitable aftermath.

I know I sound like a curmudgeon. At 84, I’m guess I’m entitled. But here’s my beef with what’s become an everyday expression for too many people. Put another way: Here’s something I fail to understand:

Why in heaven’s name do people say, “I want to give back?” Give back? For what? Is the act of “giving” really the other half of a deal, a bargain, an exchange, a barter, a quo for the quid?

NO! 

Giving in its true sense is an act in and of itself of sharing, donating, offering, providing without any strings. It’s a C O N T R I B U T I O N. 

How did we and our language get so entangled with this idea of “giving back?” How did we get locked into this crazy notion of a giving as reciprocity for something? Can’t we just give without strings?

Or is our usage on auto-pilot? Are we just programmed to say “give back” without even thinking of what that term means?

Generosity is, I believe, fundamental to our species. It is a natural act. Kids who haven’t been conditioned for selfishness are natural givers. For them, sharing is not a right, or an obligation.  It’s something intrinsic to their beings. Until, it isn’t. Until it’s seen as fulfilling one’s end of an exchange. 

The next time you’re about to intone “I want to give back,” try: “I want to contribute” instead. Feel how more meaningful these words are. How the words release you from feeling you owe someone or some group something.  How the word “contribute” frees you to act from your essence, from your core, and not because society expects this of you. Instead, it’s something you expect from yourself. Because it’s good.

-Guest blog

Like many of my fellow Americans, I’ve been deeply moved this month by so many stories and photos and interviews recalling the terrorist attacks on our country twenty years ago. But perhaps what moved me most – to my own surprise and wonder – was the speech by former President George W. Bush at Shanksville, Pennsylvania. You can read it here. 

He praised the courage of passengers and crew on Flight 93, who brought the hijacked airplane down, losing their own lives but saving the terrorists’ probable intended target, the United States Capitol.

President Bush was eloquent. His language was often lyrical, always tough and true. “The world was loud with carnage and sirens, and then quiet with missing voices that would never be heard again.” He spoke of horror – “the audacity of evil” – and “the solidarity of grief and grace” rising to face “the brute randomness of death.”

Other speakers praised the bravery of first responders who died saving people in the towers. The day was thick with grief – we heard stories of widows and their children who grew up without a father. Survivors still wonder why they escaped and friends were lost. But no one else I heard dared to address the spiritual challenges raised by so much pain. President Bush did.

He acknowledged there is no simple explanation for unearned suffering. “All that many could hear was God’s terrible silence.” He didn’t offer an explanation or solution. Then this: “But comfort can come from a different sort of knowledge. After wandering long and lost in the dark, many have found they were actually walking, step by step, toward grace.”

A cynic could say, “He has a good speech writer.” Yes, but Bush has a reputation for telling his speechwriters what he wants to say. These remarks seem too personal, vulnerable even, not to have come from the speaker’s own tough conversation with his Maker. And I suspect it’s still going on.

On a single day, May 31, 2021, The Washington Post carried obituaries of three very different men. They probably never met, but their lives had something very important in common.

As adults, each had made a life-changing shift in the path he was taking. And that shift redounded to improving the world.

Robert L. Smith, Educator
Age 96

Robert L. Smith made decisions that changed the lives of countless thousands of young people, thousands in person, more from a distance. He died on May 24, 2021.

Robert’s family were Quakers, a faith he deeply embraced as a young person. He was attending Harvard College when World War II broke out. 

As a Quaker, Robert was expected to be a conscientious objector. It grieved him as a Quaker, but he was convinced that Hitler was so evil it was morally imperative to fight the Nazis. He fought in active combat, including the bloody Battle of the Bulge. 

Back home, in 1949 Robert graduated Berkeley and earned a Master’s degree in English at Columbia in 1952. He eventually became a dean at Columbia, but he never stopped being a Quaker. In 1965, after reaching the highest levels in academia, he pivoted to a downward path. For the next thirteen years, from 1965-1978 Robert served as headmaster of a Quaker school (Sidwell Friends) in Washington, DC. 

He influenced the children of Presidents Nixon, Clinton, and Obama. He increased the number of Black and Jewish students. He could personally call all 1000 students, from kindergarten to graduating seniors, by name. He led children to Quaker values of simplicity, humility, and peace making. Graduates of Sidwell have taken their places as leaders in every area of United States life.

After thirteen years at Sidwell, Robert pivoted again. He enlarged his quiet circle of service to become an adviser to Congress and the Executive Director of the Council for American Private Education which, according to The Washington Post, is a coalition of more than 33,000 elementary and secondary schools. He influenced the education of all the students who attended them.

After 61 years of marriage, Robert’s wife Eliza preceded him in death. When he passed on May 24, 2021, he left three children and eight grandchildren. But the number of children he influenced for good can only be counted by God.

Paul J. Hanly Jr., Litigator
Age 70

Paul J. Hanly, Jr. grew up exposed to seeing both sides of the law up close. He was born in Jersey City, New Jersey, where his father worked for a time as a prison warden before he became a hospital administrator. 

But obituary author Emily Langer writes, “his maternal grandfather, John V. Kenney, was mayor of Jersey City and a local political power broker who served time in prison after pleading guilty to federal charges of income tax evasion.”    

Paul studied philosophy at Cornell and Cambridge in England. His apparent attempt to understand his background then led him to Georgetown Law School, where he graduated in 1979. [Full disclosure: I graduated there in 1977 so we’d have been contemporaries, but I do not remember him.]

According to Langer, Paul began his legal career in 1979 defending corporations accused of harming the public. For instance, he represented one of the world’s largest asbestos companies. He was very successful, highly regarded, and I imagine well paid in this role for nearly 22 years. 

But on September 11, 2001 everything changed. The attack on our country, according to his son, inspired him to practice law as “a public service.” 

Hanley changed sides. Here’s how Langer described the pivot:

— He helped represent hundreds of victims and families in lawsuits related to the attacks.
— He helped win a $60 million settlement for victims of alleged sex abuse at a school in Haiti.
— He represented plaintiffs sickened by defective drugs and medical devices.

But Paul’s service to victims was just getting started. By the time he died Paul was best known for representing victims of opioid addiction throughout the country. These drugs, according to The Washington Post had already resulted in more than 500,000 deaths. Beginning in the early 2000’s and continuing to his death on May 22, 2021 from thyroid cancer, Paul Haney’s single-minded drive was to win justice for opioid addicts. 

Beginning in 2007 he and a law partner, Jane Conroy, won a settlement of $75 million from Purdue Pharma on behalf of 5000 clients addicted to OxyContin.

He kept going, building cases and winning settlements. In 2018 he and two others were appointed co-lead counsel in multidistrict litigation against opioid producers throughout the country. In 2019 they reached a $325 million settlement in two counties in Ohio. 

Paul Hanley’s work will continue. His team is on a crusade to eradicate opioid addiction. Multidistrict lawsuits are pending throughout the United States. According to Jane Conroy the work involves “thousands of cities, counties and tribes” seeking redress. 

Paul’s life path took several twists and turns. It began with a search for meaning through philosophy (perhaps inspired by trying to understand family members he loved), then to personal success, and finally, inspired by a terrorist attack, to a commitment to serving those who could not speak for themselves. One imagines that was where he found his truest self and deepest satisfaction.

B. J. Thomas, Singer-Songwriter
Age 78

I’m embarrassed to confess I didn’t recognize the name. I should have. I would certainly recognize “Raindrops Keep Falling On My Head,” the song BJ Thomas made famous on the sound track of Butch Cassidy and the Sundance Kid.” He died on May 29, 2021 from lung cancer.

As a singer, BJ was hard to pin down. He grew up listening with his father to country favorites, Hank Williams and Ernest Tubb—music that seemed to make his father happy. BJ’s own music would also be influenced by “gospel, soul, pop, and early rock music by Mahalia Jackson, Jackie Wilson and Little Richard,” according to Washington Post writer Harrison Smith.

This Texas boy started performing in his early teens with a band called The Triumphs. At the age of 23 he struck it big when his single, a version of Hank Williams’ cover, “I’m So Lonesome I Could Cry,” rose to No. 8 on Billboard. He said he wrote the song for his father.

Unfortunately, Dad’s example had a dark side: he was an alcoholic. The boy too started drinking heavily and using drugs in his teens.  

In his twenties he married Gloria Richardson, whom he loved. But he had become addicted to Valium and was using $3000 worth of cocaine every week. He overdosed several times. He claimed he once was pronounced dead but was revived. His marriage failed.

In 1975 his life was in the toilet. He wanted his wife back, and turned around. He became a Christian and got sober. He and his wife reunited and  had three daughters together. He’d regained the self-respect lost in his childhood and was determined to pass it on to his family. 

Two years later BJ made his last Top 40 hit, “Don’t Worry Baby” and then began to devote himself entirely to gospel music. Out of seven Grammy nominations for best inspirational performance, he won four, with a fifth for best gospel performance. Although he still sprinkled in some old pop and country hits in concerts, gospel was the only music he recorded  from that time on.

BJ had found his purpose in life. He said, “I want my music to have a positive effect on people. When I perform live I hope the audience will leave with their heads lifted up.” 

By pivoting for good, this man found his deepest calling.

In my tough conversations about race with African-American friends, the two words that most powerfully describe the systemic racism they experience daily are Trauma and Exhaustion. Not momentary or situational trauma or temporary exhaustion. By no means. These conditions, I have learned, have been etched into the psychological DNA of many African- Americans whom I respect, and in some cases, revere. Many live with trauma and exhaustion throughout their day. Everyday.

I cannot imagine what it must be like to feel continually traumatized and exhausted. I might were I a Jew in Nazi German or for that matter, a Jew in much of Europe during the 1940’s. Or, in a concentration camp not knowing whether I would be among the next to be exterminated. Or, for that matter, what ISIS victims must feel if their village was overwhelmed by these zealot-killers.

Imagine getting up each morning and not knowing whether I will be stopped when driving because of a minor infraction and then knowing that I could be the next George Floyd or Philando Castile. Imagine waiting at a department store counter for a clerk to show you a piece of jewelry… for FORTY-FIVE MINUTES as what happened to a dear friend of mine. Or just for a moment wondering what it would feel like to be white for just one day. Or, knowing that the slightest move could touch off an incident. Or that a family member might not receive the same level of care as a white patient in a hospital or clinic. Or that the sentence I would receive for a crime is more severe than what a white person would receive. Or, knowing that my children’s education would be inferior to what a white child would receive. Or, or, or?

Knowing all this, how should I think when I come in contact with a Black person? Should I feel pity? I hope not. Sympathy? Not that either. Empathy? Getting warmer. Empathy suggests putting yourself in the shoes of the person whom you’re listening to and trying to imagine what they are feeling.

According to Isabel Wilkerson, author of the New York Times bestseller, Caste, we white folks should consider radical empathy. She defines radical empathy as “putting in the work to educate oneself to listen with a humble heart to understand another’s experience from their perspective, not as we imagine how we would feel.” Radical empathy, she continues, is “not about us and what we think we would do in a situation we have never been in and perhaps never will.”

In other words, radical empathy is not just putting ourselves in others’ shoes and listening with a humble heart. It’s not just viewing their experience from their perspective. For me, it’s more: it’s putting in the work to educate ourselves about our country’s past and, for good measure, to evaluate our involvement in its future.