Compassionate, informed advice about healthcare decision making

Posts Tagged ‘grief’

My Life At 100

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I made it to one hundred! 100. The Big One-Oh-Oh.

This is my 100th blog post. It took a while. I started blogging in 2011 and made six blog posts that year. For the first nine years, I only published 51.

From my very first blog post, May 11, 2011: “How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years.… One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.”

(BTW, shout out to Kelly Brachle, of Quality of Life Publishing Co., who edits my ramblings into a coherent thought. And while I am shouting out, nothing leaves our home without the approval of my wife as she stands in for the “average reader” [when I showed her this post, she reminded me she is “above average”]. More than once, her suggestions have saved me some embarrassment.)

It’s all about the stories — family, friends, wilderness

Although I often stick to the theme of making end-of-life decisions, other topics get some attention. I share my own family’s experience with death and dying, like with my mom’s decline and death in “How did your mom feel about her dementia?” Grief is a repeated theme, like my recent post on the funeral ritual for my brother 42 years after he died.

I really try to tell stories, like the post about my friend who died with dementia. I wrote about our friendship since junior high and how we fished together in the years before his death. Occasionally, I share my adventures in the wilderness, like the one about my love of swamps.

I have been writing my whole adult life – before the days of the blog. A few of those older writings made it into the collection. I reprinted a story about riding my bicycle the length of the Outer Banks from a 1993 newsletter published by the nursing home where I was chaplain. For several years following a difficult time in my life, I sent letters (essays, really) to family and friends. In a 2014 post, I shared a piece I did in 1998 about my friend, mentor, and author, Elizabeth O’Connor.

Writing and videos for short attention spans

We have become a people with short attention spans, so I try to limit each post to about 500 words. I have even ventured into producing two-minute videos on various topics. Sometimes I’ll tell the same story in both formats. I did a blog about the lesson my father taught me about letting go in the blog “How to get to ‘It doesn’t Matter!’” I then did a YouTube video about the same story.

By the way, you can subscribe to my YouTube channel and look through my “Hank’s Deep Thoughts” playlist.

I have found that writing for others helps me think things through. I can clarify thoughts in my mind when I have to explain things in a way others can understand. So even if no one else reads these, I will keep on writing these blog posts.

Oops! I just passed 500 words. Bye!

Grief Upon Grief, Upon Grief — A Funeral, FINALLY, 42 Years Later

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Can you have a funeral for someone who died 42 years ago? Last week, I wrote about having to delay the burial of my mother-in-law’s ashes for ten months because of COVID. Why not 42 years? In 1996, I officiated this long-delayed funeral, choking back tears.

The summer of 1996 turned out to be a terrible one for me. I went through an unspeakable loss that involved a major betrayal and abandonment. By August, I couldn’t get my dead brother, Randy, out of my mind amidst my grief and sadness. By that time, he had been gone over 41 years.

Randy only lived a week, and never left the hospital. He was born without functioning intestines. It was clear that he would die within days. This was back when children were not permitted to visit hospitals, and I was just six years old. I never saw Randy. I never held him. I did not know what it was like to look upon his face.

And yet, during that summer, I missed him. Fresh grief has a way of bringing up old grief you didn’t even know you had.

The backstory

Mom and Dad were visiting for our son’s high school graduation in 1993. After dinner one evening, Randy somehow came up in conversation. I said to my parents, “Tell me about Randy’s death.”

Instantly, Mom burst into tears. Once she could speak, she said, “My father would not let me go to Randy’s funeral.”

My grandfather was a funeral director and arranged to remove my brother’s body quickly from the hospital. Mom had already been sent home, leaving her newborn son behind to die alone. Dad attended the graveside service, but my grieving mother was not allowed. My controlling, alcoholic grandfather decided it would be better for Mom to avoid the pain of putting her child in the ground.

In somewhat of a defense of my grandfather, this was how things were done in 1954. Avoid the pain and go on with your life as if nothing happened. At the time, funeral directors were the only grief experts. Granddaddy was doing what he thought best.

Nowadays, we encourage the parents, and even siblings, to hold their lifeless child. Some families even wash their children, preparing them for burial. These rituals are such an important part of the grief process.

Fresh grief, old grief

Although I always was aware of Randy’s short life, I can never remember him coming up in conversation until my inquiry in 1993. Just mentioning his name opened the floodgates. My mother carried that huge ocean of grief just below the surface all these years.

Did thoughts about Randy painfully arise when Granddaddy died? Randy died on November 22nd. Did Mom think about Randy when President Kennedy was killed on that same day nine years later? Did she think about Randy at my graduation from high school? I am guessing she thought of Randy all the time. I never knew.

When my father was taking his last breath in 2002, Mom’s parting words to him were, “You’re going to see Randy before me.”

Grief never goes away

Although I was not conscious of it, the loss of my brother was always a part of me, too. It didn’t occur to me until I was in the depths of despair that summer of 1996.

As Thanksgiving approached that year, I got an idea. My daughter and I were going to spend it with my parents in Florida. I decided to go to Randy’s grave and conduct a personal graveside service — a ritual. I called Mom and Dad and told them my plan, inviting them to join me. Mom said, “I would love to. You know what I told you about my father.” Indeed, I did.

So, on Thanksgiving 1996, 42 years after his death, we had a funeral for my brother. Mom, Dad in his wheelchair, my brother, his wife, my daughter, and I gathered at the grave. I read the words of committal (“Ashes to ashes, dust to dust”) and Psalm 23 (“The Lord is my shepherd”), we said the Lord’s Prayer, and I stammered through a prayer about Randy.

We turned toward each other. We embraced. We wept deeply. Forty-two years of sorrow ran down our cheeks.

“We Were Called to Sacrifice as a Nation. We Didn’t Answer.”

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Do we care? Really? Has our overinflated sense of personal freedom condemned us to fail as a society that cares for each other?

Last year, I wrote about my first experience wearing a mask in public. I realized in the moment of walking into the post office that I was donning the mask out of concern for others. Before Christmas, the same office displayed large black ribbons in honor of a postal clerk who had died of COVID. Did we, the patrons, give him the disease?

During this pandemic, we have all been called upon to make some sacrifices for the common good. Many have made great sacrifices — retail workers, first responders, and healthcare providers, to name a few. The call was much more modest for most of us — wash our hands, wear a mask, don’t gather in large crowds, and get vaccinated.

The call to sacrifice

Contributing opinion writer, Margaret Renkl, reflected on this call to sacrifice in her piece, “We Were Called to Sacrifice as a Nation. We Didn’t Answer.” The article was published in The New York Times this past Memorial Day, a day we remember those who sacrificed all for the common good.

She likened the novel coronavirus to a deadly enemy — not unlike the fascists we confronted and defeated in World War II. My father and millions of men and women in his generation answered the call to join that fight. There was no question that he would go. It’s what that generation did. Our nation depended on those who were willing to sacrifice.

Renkl suggests this sense of national sacrifice was squandered in the Vietnam War. Not only were we misled by our government about the imagined progress of the war effort, but the sacrifice fell mainly on the poor and minorities who could not avoid the draft.

I was fortunate enough to attend college at that time and so was deferred from the draft. But I kept a constant eye on my draft status, wanting to avoid the fate of the others who died in our losing effort.

The false idol of personal freedom

Many feel the call to wear a mask or get a vaccine violates their personal freedom. Rep. Jim Jordan of Ohio put it this way in a congressional hearing in April, “‘Dr. Fauci, when is the time?’ Jordan kept asking. He wanted to know when it was ‘time to pull back on masking’ and ‘physical distancing.’ ‘When do Americans get their freedoms back?’” The Washington Post

Excuse me? We had (and still HAVE) the opportunity to save the lives of tens of thousands of our fellow citizens by wearing masks and getting vaccinated. Why wouldn’t we?

Many choose not to because of “freedom.” What is missed by so many who refuse these simple measures for the sake of freedom is that we do them mainly to protect others, not ourselves. To get to herd immunity, we must have enough of the herd answering the call to “sacrifice” by getting a shot or two.

Renkl’s article also touches on another huge issue of our time: climate change. The loss of a sense of the common good here has an even greater impact on our world. In this case, instead of the elderly and medically at-risk, the others we are protecting by addressing global warming are our grandchildren and great-grandchildren. Are our “personal freedoms” more important than they are?

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Looking for a Sign… Calming Amidst Grief

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I had NEVER seen a street sign like it – “TRAFFIC CALMING AHEAD” – and I collect photos of unique street signs.

Like the one we saw driving home from the Memphis airport the other night: “THIS IS YOUR SIGN TO BUCKLE UP.” (The folks at the Department of Transportation do try to make us smile.)

Or the one I saw years ago when I was speaking in Boulder, Colorado. It was February. I went out one morning for a walk on a pedestrian path. I approached an underpass and could see some patches of ice in the shadows of the bridge.

Not to worry! This progressive, free-thinking university city put up a sign to warn me: “ICE MAY EXIST,” it read. I thought, “This is SO Boulder!”

The sign begged more questions. Ice may or may not exist, correct? Do I exist? If I do exist, how did I come into being? What is the nature of existence? What is the nature of non-being?? Goodness! I was just going out for a walk.

Obvious signs

It’s not just in Boulder that I pondered the meaning of life upon seeing a road sign. While driving home from church in Northern Virginia, I saw a sign that read, “ROUGH ROAD AHEAD.” Ya think? Here I imagined Buddhists writing the road signs with their idea that “life is suffering.”

Then there are the obvious signs. I saw a “WARNING — ALLIGATORS” sign as I put my kayak in the Hillsborough River outside Tampa. The authorities-that-be felt the need to put another sign right below: “NO SWIMMING.” Really? Who was thinking of swimming with the alligators? The people in Florida really are crazy.

 

I was a chaplain for a hospice in Ft. Pierce, Florida, which had a hospice house for patients to spend their last days. There were tables and benches on the grounds for patients, their families, and staff to take a break outdoors. Beside a nearby pond, there was a sign, “WARNING BEWARE OF VENOMOUS SNAKES.” Good Lord, these dying folks have enough to worry about.

Family calming ahead

The “TRAFFIC CALMING AHEAD” sign was on a quiet, tree-lined suburban street in Alexandria, Virginia. This sign was followed by one that said, “SPEED CUSHIONS AHEAD.” I’ve heard them called “speed bumps” or even “speed tables” but “cushions”?

My wife, Sally, and I were in town to attend a funeral for a friend who died after living with ALS for years. Sally had known his wife since before they were married. Over the weekend we twice visited the widow’s home — once the night before the funeral and then for a gathering afterward – and saw the signs.

As we drove to her home, the words on the sign morphed in my head to “FAMILY CALMING AHEAD.” Indeed, it was. The widow and her two college-age children welcomed mostly family into their home the night before the funeral. There was lots of hugging and laughter. The scene was repeated after the service with a larger gathering of friends, business colleagues, and more family.

The grief process can be a rough road for many, but these calming events in the first days are a good place to start the journey.

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