Goodbyes

Goodbye, Michael

Like millions of people around the world, my heart has been aching this week. Michael Jackson, a musical genius and troubled soul, touched so many of us in life and, now, in death. The collective global grief is palpable; just go to YouTube, search for one of his songs, and read some of the comments from admirers like this one, from a child named "Dancing4lifeDiva":

"MJ ur the reason why i started dancin and singin when i first saw his video i wuz 3 and ever since then i been dancing.He wuz and still iz my idol my ro-model and inspiration he iz very special 2 everyone and im only 12 yrs old when i heard he died I fell to the floor and just cried 4 3 hrs i wuz soo heart broken."

Michael Jackson and I were born the same year, 1958, and while I was writing book reports, he was rocking the stage with the Jackson 5. Although I loved that group, Michael's music is entwined in my memories of college and beyond. I'll never forget blasting the "Off the Wall" album (yes, those vinyl discs) in our apartment senior year or partying to "Don't Stop 'Til You Get Enough" -– one of the best-ever dance tunes. I regret that I never saw this incredible performer in concert.

Goodbye, Michael Jackson; I hope death has finally brought you peace.

Consider this . . .

How Michael could move.

How Michael inspired others to dance, including hundreds of orange-clad inmates in the Philippines who re-enacted "Thriller."

How Michael helped bring together an impressive group of artists to sing "We Are the World" to support Africa relief. 

 

The lasting impact of suicide

Sam was 11 years old when his mother took her own life in the late 1960s. He didn't have a chance to say goodbye, and his memories of her grew sketchy over time. As a result, Sam -- now a 50-something professional photographer -- is creating a "huge volume of memories" for his wife and two children, ages 12 and 15. He described his experience to me this way:
 
"My mom was very creative. She threw really good birthday parties, like one where she got boards, switches, wires, batteries and lights, and we made little light contraptions. We lived in a large Victorian house, and she took care of me, my two older sisters, and our animals; we had a dog, several cats, a horse and pony, and a pet monkey. I used to drive our tractor and loved mucking around outside. I had a pretty serious stutter as a kid, and school was always terrifying for me. She was very helpful with that.

Every year, my mom would go away for one or two weeks to a psychiatric center called the Institute of Living in Connecticut. I just figured every mom did that. My grandmother would help take care of us, and there were presents for us every day; that was my mom's doing. At the institute, she made us things. I still have a little clay man with his arms around a tray that I love. But most of those things are gone. After my father remarried, his wife led a campaign to exorcise the house of my mother's stuff. There was a significant yard sale when I was 14 or 15 when everything went out. As an adult, I was visiting a friend and saw a steamer trunk with my mother's initials in red letters on the front. And I said, 'That's my mother's,' and he said, 'It's yours, you can have it.'

The suicide was kind of out of the blue; there was no particular incident that seemed to spark it. My parents were having friends over for cocktails or dinner, but my father didn't know where my mother was. So he called the police. We were home, and I actually heard the gunshot, but I thought it was firecrackers. They found my mother alive and took her to the hospital, and she lived for a day. I really wanted to go see her, but they told me she was all bandaged up and wouldn't recognize me. They said, 'She's probably going to die, and if she lived, she'd have to learn how to read again.' And I thought, 'I'll teach her how to read again, I'll take care of her.'

I still don't know if it would have been the right thing, if the image of her bandaged up would have lingered in my memory forever. But I wish I'd had at least a moment to see my mom. As an 11-year-old kid, you don't appreciate your parents until they're gone, and then it's too late. My wife is Catholic, and after we married we went to some wakes with open caskets, and I thought, 'This is really good. You can look at the person and say goodbye and have a moment to process it.' 

We had a memorial service for my mother and then a party at our house. No one explained how this was a time to get together and pay your respects. I didn't understand why they would have a party after my mother died, and I went and sat in my room. I resented it for years.

One thing I never understood was this: My dad bought a cemetery plot and had a stone placed under a tree, but he didn't tell us about it. I know he was furious at my mother for leaving him alone with us, and he wanted us to move on with our lives. It wasn't until high school that a friend of mine saw the stone and told me. Once I found out, I would go visit it all the time.

There was a suicide note, but I didn't see it until I was 38 -- about the same age my mom was when she died. For years I thought that one of the reasons she killed herself was because she couldn't get us to brush our teeth or other things we were supposed to do. Then my sister went to the police station and got a copy of the letter. It basically said, 'I can't stand the thought of you having to put up with me. I don't think I should be around; I'm doing this for you. You're wonderful kids, and I love you so much.' It took me a long time to realize that she was sick, that she wasn't perfect. 

As a result of my experience growing up, and also the changing times, I try to be a significant part of my kids' lives. I make them breakfast every day (I used to be a short-order cook), and we'll eat together. I have hundreds of thousands of photos, and I have been making picture books of our adventures. We also take 15-second movies of ourselves and edit them together to make longer ones. I continue to learn new things and instill in our kids that you're never too old to try something new. About 10 years ago I took up guitar, and about two years ago I began playing ice hockey. Life is about learning new things."

Consider this . . .

Create opportunities for your family to remember each other and good times.

Explain funeral rituals to children and include them in those rituals. (For more on this, see the tips at the bottom of "Missing little Kayla.")

Dying to help

I just learned about a blog that chronicles the experiences of a woman and her siblings as they help their mother, Bette, face advanced cancer.

In her posts, Lois Kelly offers advice on what to say or do –- and what not to say or do -– to support someone nearing life's end. She encourages people to express their love and admiration for the dying person, to bring over photos for reminiscing, to keep sending cards and notes, and to listen well.

The blog, called "dying to help," is candid and insightful and, at times, even humorous. Check it out here.

WBUR airs end-of-life issues

This week, Boston public radio station WBUR has been broadcasting a five-part series called "Quality of Death: End of Life Care in America" that highlights some of the vexing issues around end-of-life decisions and the wonderful palliative care services available to help patients and families. According to the station, the segments will be aired together in a one-hour Inside Out documentary on Sunday, May 3, at 8 p.m. and Thursday, May 7, at 9 p.m.

Here's a summary of the project, courtesy of WBUR:
"In this new documentary about end of life care in America, special correspondent Rachel Gotbaum investigates what prevents many patients from having a dignified death. From well-intentioned but maybe unwarranted medical interventions, to the pressure from family members, to the difficult decisions doctors -– who are trained to extend survival -– have to make when treating elderly patients, this program delves into the challenges in America to proper end of life planning and a "respectful death."

• National surveys show a majority of Americans would prefer to die at home, but 80% of us die in hospitals or other institutions.
• One-third of all Medicare spending, or 144 billion dollars, is spent on patients at the end of life.
• Fewer than half the hospitals in the U.S. offer palliative care, a type of care that helps patients decide on end of life treatment.

In this documentary, Gotbaum follows several patients in their last months as they confront some of the most difficult decisions of their lives –- whether they should pursue aggressive and sometimes painful medical treatments that may extend survival or rather focus on how to maintain the best quality of life in their final months. She reports on how trends in the American healthcare system influence their decisions, and she talks to family members who are often the ones pushing for as much intervention as possible. This is a documentary on a topic that people are often reluctant to hear about, let alone discuss; but this program provides information and insight into an issue that all of us will eventually face.

The type of care we receive at the end of life is of profound importance to us all at a time when the lines between technology and humanity are getting blurred.

Apart from the human stories that are central to this program, the financial aspects are also of critical importance. The amount of money spent on end of life care in the US is being carefully analyzed in healthcare circles as a new administration confronts the spiraling costs of the modern healthcare system in a country with an aging population.

How can the healthcare budget match a medical culture in which death is considered failure?"

You can listen to the series by clicking here.

Dressing the babies

A friend passed along a "goodbye" story the other day that I must share because it is heartbreakingly powerful.

It's about a labor and delivery nurse in Florida who sews tiny outfits for the rare times when a baby in her hospital doesn't make it. Written by Thomas French of the St. Petersburg Times, the article recounts the story of a couple, Mary and Steve Spittka, whose daughter was stillborn despite an emergency Cesarean section. He describes how nurse Lois Bineshtarigh helped soothe their pain by baptizing Lindsay Rose and -- with incredible tenderness -- dressing her in a handmade gown with ribbon and lace so the couple could hold her, take photos, and say goodbye.

The wrenching piece was published in February 2003, and nine months later (as I discovered through Google), Lois lost her 16-year-old son in a head-on car crash. She planned to keep stitching gowns for the babies, but first she had to choose a funeral outfit for her own precious child.

Grab some tissues for "A gown for Lindsay Rose" . . . and some more for "This time, she must dress her own son"

Gertrude's final days

Maybe it's just luck, but I often find myself turning on the radio or TV as a "goodbye" story is being aired or teased. The same thing often happens with print publications. A newsletter arrived the other day from the Jewish Family & Children's Service of Greater Boston, an agency that serves people at critical stages of their lives. On page 6 was a touching story about a Holocaust survivor named Gertrude who, at age 94, had outlived her husband and friends.

Gertrude was afraid of dying alone, and the staff of this agency made sure she did not. They also made it possible for her late husband's cherished violin, which saved him from death by the Nazis, to be delivered safely to the United States Holocaust Memorial Museum in Washington. These caregivers gave a precious gift to Gertrude, who had witnessed humans' capacity for cruelty, by enabling her to die with comfort and dignity.

You can read this story by clicking here and turning to page 6.

Consider this . . .

Listen to the wishes of the person who is dying.

Most of us don't want to be alone at the end, so be there for your loved one -- or make sure someone else is there.

Relishing a last dance

For most of her life, 82-year-old Marilyn "Minty" Coyne has been passionate about square dancing. Now in hospice care with life-threatening breast cancer, Minty wanted one more chance to do-si-do and promenade.

Yesterday, the hospice granted her wish by bringing a group of professional square dancers in cowboy gear to the nursing center where Minty lives north of Boston.

Minty donned a colorful skirt and ruffled red blouse and danced to the music as a small crowd of residents, nurses, and social workers "hooted and hollered in appreciation," according to the Boston Globe account. It was the diminutive widow's first square dance in a decade, and after some swinging and clapping, Minty sat down, took a deep breath, and exclaimed, "That was wonderful."

Everyone deserves a chance to enjoy one's life passions, especially as the end draws near. Here's to you, Minty.

To read this story, click here.

A year of goodbyes

It has been a year since I began blogging about goodbyes at the end of life, and I wanted to pause and reflect on what I have learned and, hopefully, passed along to you.

During this year, I've had the privilege of sharing the stories of sons and daughters, parents and grandchildren, friends, caregivers, colleagues, and even dog owners who have lost their loved ones, both suddenly and after long illnesses.

I have learned so much from them, including how hard it can be to say goodbye, and also how hard it can be to not express how you feel.

I've learned that a loved one's death leaves a permanent hole, and that even years after the loss, emotions and memories can remain raw and potent, and people are still missed terribly. That's because that hole is never filled, you just build your life around its precious space.

Through my blog, I've discovered that goodbyes can take many forms –- from sewing quilts to honor a beloved grandmother to scattering a friend's ashes in a cherished place to building a fire for your ailing dad to unzipping a body bag to thank to a fallen soldier. And I've learned that even if you can't say farewell in person, small gestures like writing a letter to a grieving widow can be hugely meaningful.

Many of these stories have inspired me to always say "I love you" to the people at the heart of my life and to do my best -- as Randy Pausch so eloquently expressed through his "Last Lecture" messages -- to live life to its fullest. I've been reminded that what matters most at life's end is our relationships, and that what connects us as human beings is this: We want our lives to have meaning.

Thank you to everyone who has shared a story and/or encouraged me to keep writing.

Debbie

Emergency room goodbye

As a Polish language interpreter for several Boston-area hospitals, Joanna Bereaud has often conducted her work by phone, helping translate medical information for patients and families who don't speak English.

But a Christmastime "gig" this past December was like none she had ever before experienced, and it left her pondering the meaning of life and death.

Joanna recently described this remarkable conversation as we sat in the lobby of Children's Hospital Boston, where she is a music therapist who travels to different units with guitar in hand to help kids heal through song.

Shortly before Christmas 2008, Joanna -- who grew up in Poland -- was home washing dishes on a Saturday night when the phone rang. Her husband was upstairs putting their two young children to bed, so Joanna took the call. It was a staff member from a local emergency room looking for an interpreter right away for a man they couldn’t understand.

"We are not sure what language it is, either Polish or Portuguese," the caller explained. A doctor got on the line and said, "We want to find out what the patient is saying." Someone told Joanna that the man was in critical condition -- but the situation was very chaotic, and she knew nothing else about him: his name, why he was in the hospital, or even whether someone was holding the receiver for him. As soon as he started talking, though, she knew he was speaking Polish. He seemed to be in his 60s or 70s.

"Basically, he confessed his sins to me," Joanna recalled. "He must have known that he was dying. I can't remember how long the conversation took, but it must have been shorter than half an hour. He said how much he loved his wife and that he was regretting that he never made up with his son –- but exactly why I didn't know. He had a list of things that he wanted to spill out and take off his chest.

"Then he stopped talking, and I didn't know what to say. The only instinct I had was to sing him 'Silent Night' in Polish. My kids go to Polish Saturday school, and my brother and I co-lead a singalong in the morning, and I had been there that morning. We were practicing 'Silent Night,' so I had it fresh in my head. I sang to him one verse, and then I couldn't hear anything; at the beginning I had heard his breath. Then someone picked up the phone and said he was gone."

"I couldn't believe it was happening," Joanna told me. "It was a complete blur and nothing like I've experienced before. It was interpreting in the moment."

The encounter touched Joanna profoundly. She could barely fall asleep that night, and she desperately wanted to share the man's last words with his family and let them know about the song. But he remained, and still remains, anonymous.

Instead, Joanna has shared the story with friends and colleagues and has reflected on what it taught her about expressing yourself at the end of life. 

"It made me think about how much of a gift it is to have somebody you can call at any moment, and the disability of not being able to communicate, and how fragile life can be and how important it is to say 'I love you' to somebody. It made me think about how tragic it can be when a father and son are not able to agree -- and that even though we may fight with our parents, we have to make up as soon as possible.

"It doesn't have to get to the point where you don't talk," she said. "You might not have enough time to say goodbye."

Consider this . . .
Tell your loved ones how you feel before it's too late.
Helping someone say goodbye is a gift.

You can hear Joanna's gorgeous voice on this video taken at Children's Hospital in December 2008.

On a precipice

As a rabbi and a hospital chaplain, David had presided over many funerals and counseled numerous bereaved families over the years.

But when he was diagnosed with a life-threatening illness, David didn't talk much about his eventual death with his family –- and his wife didn't want to dash his hopes for a medical miracle.

David did, however, confide in a fellow clergy member.

Laura was a lay Catholic chaplain at the same hospital where David provided pastoral care to Jewish patients when he was not leading his own congregation. They had known each other for several years and were accustomed to comparing spiritual notes.

On Thanksgiving Day, David called Laura and told her that he had been hospitalized and needed to talk right away. She wasn't entirely surprised, as David had been feeling disoriented and off balance lately. Laura left her turkey in the oven and went over to see him. The doctors had discovered a mass with a grim prognosis.

"He said, 'I'm going to need a chaplain.' And I said, 'Don't you want to ask one of your Jewish colleagues?' He replied, 'No. I know you, I know what I'm going to get.' It was a big challenge, because I had never done that kind of pastoral care with somebody from another faith. I couldn't use my Christian terminology, like the crucifixion or resurrection."

Over the next eight months, the pair met nearly every week and talked about what was on David’s mind: his family, his health, and the meaning and purpose of his life.

They also did some healing work using imagery, as Laura explained to me one day in the lobby of the hospital. "The first time we met I said, 'We're going to experiment with this. Why don't you close your eyes and we'll do this visualization. Tell me where you are geographically, the topography of your landscape.' He said, 'I'm in a very cold, dark place. It's wet, like it's raining. I'm standing on a precipice, and it's dark and raining.'" The setting was particularly striking, given David’s extreme fear of heights.

At each session, Laura would ask David to describe where he was, and eventually the darkness in his image waned. "Initially he was too afraid to get close to the precipice, so he stood far away in the dark. As time progressed, he got closer and closer to the edge and found that instead of staring into nothingness, he discovered a panorama of verdant valleys. Even though he was on this precipice, it stopped raining and it got lighter, and it was hopeful and green."

During the last two months of his life, David grew more dependent on others to take care of him physically. This was not easy for a rabbi who, by virtue of his profession, was used to guiding and consoling others and being at the center of attention. "To lose that persona is a tremendous unmasking, and few people can tolerate it," Laura reflected. "But David had an incredible sense of acceptance and gratitude."

In the spring of 1999, David took a medical turn for worse and went into a coma. Although he had shared tender moments toward the end with his wife of more than 40 years, she wished they had spent more time talking about "things that matter," like his legacy, his wishes for his three grown children, and what was in his heart.

David died just two days shy of his 68th birthday, and his colleague Laura delivered one of the eulogies at his funeral.

Although they had not openly discussed his impending death, David's wife knew, thanks in part to the two chaplains' conversations, that he was at peace.

Consider this . . .
A chaplain can help individuals and families confront their fears, wishes, and expectations about dying.
Don't put off talking about things that matter with your loved ones.