Bereavement Service

Hello.  My name is Jenny Buckley and I am one of the Weinstein Hospice team members. Many of you may have met me on your first exposure to Weinstein and let me say with sincerity that I am so grateful for the trust you shared with me by going forward with our program.  I am humbled to be among you again today.

In my many years of hospice experience, I have, admittedly, developed some phrases I am guilty of repeating often. If I was the nurse that came to see you first, I may have, in fact,  said these things to you. For example, I often say, it is never anyone’s best day when I show up. I get that. Even though I know the tremendous gifts hospice care can provide to patients and families, I understand that it is only with a heavy heart that one contemplates the need for hospice care. I am also guilty of repeatedly saying that while I have a bag of tricks that can treat a myriad of symptoms, there is no quick fix for the inherent sadness in this process. I get that, too.

In those first meetings, I understand that a lot of what I might say won’t penetrate and that words fail in such moments of import.

But words… words are my thing. They are the currency I use to try and express my empathy and my desire to assist.  

Today, sharing this time with you, with my heart full and my throat tight, I have words to share. Words that again may fail, but I’d like to share, nevertheless.

The most important thing I want to say is thank you. Thank you for sharing your loved one with us. It was a privilege. Regardless of the length of time they spent on our program, our team is grateful for the time we spent with them.

Our time together may have been difficult. It may be hard to remember. People think hospice care is sad for the people that do it and, at times, it certainly can be. But all of us on the Weinstein team would be quick to acknowledge that our days, our experiences produce a surreal level of gratitude. We understand the privilege of what you’ve invited us to share and we want you to know that. We are blessed with observing some of the most incredible and beautiful acts of humanity in our work that many other healthcare professionals don’t get to see. And, while not always easy, we see our work as tasking us with grabbing gratitude in our own lives because we can have lunch with Mom, take a walk with our sister on the beach, kiss our spouse goodnight.

There’s something else that is very important to say. Your loved one- the person you shared with us- the person who’s memory brought you here today- was very special to us.

Very. Very. Special.

As we read the names of the souls we served last year, you may wonder or worry that your loved one, the precious person you delivered to us for care, was lost in the numbers.

I assure you they were not.

Each person for whom we cared, each soul that we honor today, impacted us and changed us.

Each person for whom we cared, and the family that surrounded them, taught us something new that helped us to better care for the next patient and family with whom we interacted.

Your loved one has not been nor will not be forgotten. They are forever woven into the fabric of Weinstein Hospice and their memory is for a blessing.

Last week I had the privilege of attending the GHPCO conference. GHPCO is an acronym for the Georgia Hospice and Palliative Care organization. In my career I’ve attended NHPCO, GHPCO, CAPC and have undergone ELNEC training. I’m an RN, BSN, with my CHPN certification. Basically, I’ve had the alphabet soup of end of life care training and education. Recently, however, I was exposed to a very beautiful lesson on grief and loss in a most unexpected place. It was a supracalifragilisticexpialadocious lesson, in fact.

Last month, my Mom and I went to see the new “Mary Poppins” movie. In case you missed it, allow me to provide a brief recap. Mary returns to the Banks family in the newly released version, except this time the Banks children are grown and Michael has children of his own. Mary returns with her unabashed confidence and competence only to find- or maybe because she already knew- that this young family greatly needs her help. Michael’s wife, the mother of the three children, has recently died and the Banks home, more specifically the Banks’ financial situation, is in disarray.

Early in the movie, the now grown Michael is seen in the attic looking for a very important document. He comes across a strand of pearls that belonged to his deceased wife and holds them in his hands. He begins a beautiful and touching song called “The Conversation”. His closing verse is the one that touched my heart. He sings:

    “I’ll carry on just like you told me,

    I say that like I have a choice,

    And though you are not here to hold  me

    In the echoes I can hear your voice.

    Still one question fills my day dear,

    The answer I’ve most longed to know

    Each moment since you went away dear

    My question, love, is

    Where’d you go……”

Where did you go? Where did you go, indeed. A painful question, to be sure. A common question, I can imagine.

Without stepping on anyone’s theology, our hero, Mary Poppins, suggests an answer several scenes later. As she is putting Michael’s children to bed at night, she senses their grief. Quite simply, John, Anna, and Georgie miss their Mom and they are also keenly aware of their father’s stress. With loving compassion, Mary sings a song that is, in fact, nominated for an Oscar tonight. Whether or not the song brings home the trophy, its message is certainly a winner. Looking out the bedroom window into a starry sky, Mary tells the children, “Nothing’s really left or lost without a trace, Nothing is gone forever only out of place”.

Her song concludes:

    “So when you need her touch and loving gaze,

    Gone but not forgotten is the perfect phrase

    Smiling from a star, that she makes glow

    Trust she’s always there

    Watching as you grow

    Find her in the place

    Where the lost things go”

Mary’s loving message, in my opinion, is right on point. She doesn’t suggest that anyone stop missing their loved one, she only offers a strategy to cope with the loss.

I can absolutely assure each of you that our team members, the ones you honored by inviting them into your home and shared a very sacred and intimate- and scary- time, often look for your loved one in the place where the lost things go. When our hearts get heavy with the question, “where’d you go” we seek to answer it by looking at the stars that they make glow, or in the breeze that feels so good on a warm day because gone but not forgotten is truly the perfect phrase.

And you know where else we find them? In you. In seeing you today as you carry on “just like they told you” (like you have a choice)  but still make time and place to honor their memory. We see them in your smiles- and in your tears. We absolutely feel them in your hugs.

Again, we thank you for sharing them. We have not forgotten them and we think what you did for them in their last days was extraordinarily brave. As the philosopher Ram Das most famously said, we are all just walking each other home. Thank you for letting us be a part of that journey.

The Deer who didn't see the headlights

I’ve always preferred to work “in the field”. Sitting in an office has never been for me. My best days as a hospice nurse are driving from home to home, with maybe a hospital in between. While Atlanta traffic isn’t always fun, I think the freedom and flexibility suits me and I think the balance of normal things calms me. And everyone once in awhile, I learn something in the “in between” time.

Yesterday, I left a patient’s home preparing to head to my next visit. The patient and his wife were absolutely lovely and outwardly grateful for the information shared about what hospice can provide. Unfortunately, the patient has been stricken with a dual diagnosis of cancer and a rapidly progressing ALS and things are changing quickly for him and his wife.

When I left their home, I was making mental notes of items about which they requested follow up and I was thinking about the circumstances of my next, imminently dying, patient.  Thankfully, I noticed the red light and made a full stop.

At the red light, I looked across the intersection at something unusual that caught my eye. I saw a deer, a young 2 point buck perhaps, lying on the ground. He must have just been hit by a car, though I saw no vehicle pulled to the side.

My thoughts immediately left my job and shifted to the poor animal. While I know gardeners, especially, gripe about deer, I still see them as one of God’s beautiful creatures.

What I watched really struck me, as I was sitting in my car waiting for the light to change. The deer, was battling, to raise its head, its beautiful crown of antlers, and move its legs as if it could just simply get up and continue on its original path. I watched the animal do this repeatedly, each time with greater intention and exertion, as if it couldn’t believe that just a moment ago it was running freely and now, it was totally incapacitated. I felt helpless watching him struggle to understand what had just happened and that everything was now completely and permanently different.

When the light turned green - for me- I wondered if I should turn right and continue to my next assignment. What should I do and what could I do? I was probably no match or no help to this large, wounded animal. Yet I couldn’t move. Each time it raised its head, determined to carry on with its life, I prayed for it to submit and relax. Yet, how could it possibly? Can you imagine the panic? The incredulity?

As the car behind me blared its horn in demand for me to make a decision, I saw a landscaping pick up truck pull over near the deer and put on its hazards. One of the men was on the phone and the other was approaching the animal. I have a long held belief that sometimes the most helpful thing to do is not add to the chaos, so in seeing their attention, I moved on (and flipped off the car behind me. Because. You know. RELAX!).

Several times throughout yesterday and today, I thought of what I saw. The image of the deer raising its head and willing the clock to turn back five seconds would not leave me. In Mass tonight, I began to understand why.

Mercifully, I did not see the deer get hit. I can only imagine the circumstances were that he leapt out of the surrounding woods, not aware of the danger of crossing an intersection. The driver, likely equally unaware of the possibility of a high speed obstacle landing in his or her lane, was lucky to escape injury and be able to continue driving. The end result was a broken deer, on the road, trying desperately to get up and move on, totally befuddled by what had just occurred.

The deer re-enacted what I see, we all see, every day. And it was painfully sad. The patient, from whose home I had just come, played tennis until two months ago when he couldn't stop falling. It was then he learned he was being ravaged by ALS. The meeting with him and his wife, like so many others, absolutely seemed like their legs had been cut out from under them. They were, politely and graciously, trying to make sense of what their next move would or could be since they weren’t quite able to “get up” despite the ferocity with which they were picking up their heads and kicking their feet.

The phrase “deer in the headlights” is widely used to describe the look or feeling one has when something large comes before them and they are frozen into immobility. We’ve all seen it and we’ve all been there. “Deer on the pavement” isn’t so familiar and yet, for me, after yesterday, it perfectly describes the patients and families with whom I meet. They have been dealt an instantaneous and devastating blow and they are battling to get back up, undo the diagnosis that has been given, and find their own way again.

And sadly, you as the reader really know “deer on the pavement” every bit as well as you know “deer in the headlights”.  With a chill in your spine, you can immediately recall the moment, the conversation, the phone call, that swiped your legs out from beneath you and left you battling to get back up.

“Mom has Alzheimer's.”

“He’s leaving. He was cheating and he’s leaving.”

“You have cancer.”

“I’m sorry. There’s nothing else we can do.”

Insert here your own awful moment phrase that knocked you out and unable to stand. We’ve all got them. And if you want to really see what it looks like, simply turn on the news. Any of the guests of the media who’ve lost their homes to flood or fire, fled a shooting or a disaster can perfectly demonstrate the facial expression of the deer. A very not funny, “what the… “. “How the…” “but…” kind of face.

Seeing the deer was like finding a piece of art or hearing music that perfectly depicted the hard and sad feelings in my heart. And that's why it struck me so deeply, I think.

But, gentle reader, as you may well know, here at the HOPEspot, we don’t end our stories on downers or bummers. We try hard to be honest and genuine, while still finding the best possible, daresay hopeful, message from the things we see and experience.

The deer is half of the story. Remember the men, maybe landscapers, in the pick up, that stopped to attend to the injured animal? They are the other half. The better half.

I’ve said it many times before but I still believe it bears repeating. Heroes are everywhere. The world has darkness and light and first responders (official or unofficial) are the light of the world. Our humanity is shown to be most outstanding when it responds to the creature whose legs have been cut out from beneath them and can’t yet understand why they can’t get up.

If the deer I saw yesterday, in its moment of critical need, becomes the metaphor for all of us who’ve had our legs swiped out beneath us, I want to give praise to our friends, family, and sometimes random strangers who have been a part of helping us up. Or, in the sad likely case of this deer, when getting up is no longer possible, may blessings rain down on the people who offer comfort and peace. Those actions, I believe, are the purest execution of God’s word and, for me, it is wholly humbling to see that happen with every day people in everyday life.

Here's what I'd like to say to Mr. and Mrs. Bush - and maybe your family, too

I'll always be passionate about promoting awareness for hospice. Often times, when a “celebrity” or well known public figure dies, I’m always curious if hospice was involved. The last most notable example that I can recall was Elizabeth Edwards, as she succumbed to her battle against breast cancer. In death, as in life, Ms. Edwards took her unfair blows with grace and dignity and chose to have her life end at home surrounded by family. I wish the collective “we” talked more about her choice for that than about the poor choices her ex-husband made prior to her death.

As I’ve said many times, I often have the privilege of being the first one called to talk to patients and families about the benefit of hospice. Some are receptive, many are not.

Today, I really wish I had the opportunity to speak with former President George H.W. Bush and his wife, Barbara. I adore and admire this couple and would like them to have the opportunity to consider hospice. And I’d like to share with you the importance of this “imaginary” conversation, regardless of your politics- please. I’d like you to pay attention because former President Bush’s situation may turn out to be similar to someone you love.

George Herbert Walker Bush was the 41st President of the United States of America. Prior to his term as president, Mr. Bush was Vice President, Director of the CIA, Chairman of the RNC and Ambassador to the United Nations. He enlisted into the US Navy after the attack on Pearl Harbor and was the youngest naval aviator at that time. Mr. Bush was shot down over the Pacific but survived on a raft until being rescued by a US aircraft carrier. George married Barbara after returning home and enrolling at Yale where he graduated Phi Beta Kappa. George and Barbara had six kids, one of whom died of leukemia at age six, and one of whom became the 43rd President of the United States. In February of 2011, President Barack Obama awarded former President Bush with the Presidential Medal of Freedom. And finally, on June 12, 2014, on the occasion of his ninetieth birthday, former President Bush went skydiving for the 8th time.

And those are just some of the high points in the life of George H. W. Bush.

Now, life has dealt the former President some inevitable mortal blows. George H. W. Bush now has vascular Parkinsonism and is confined to a wheelchair. In 2015 he fell in Kennebunkport and sustained a fracture in his cervical spine. In 2017, he has been hospitalized three times for complications related to pneumonia, once requiring external ventilation.

He is currently hospitalized and has been since April 14th. As of this writing, we are on day 12. That’s a long time.

I’m not a doctor, but age and current presentation give me confidence in stating President Bush is on a pathway towards end of life. While unfortunate, that seems certain. I don’t know how soon, but recent history seems to indicate we are in for a bumpy landing. I wish I could speak to him and his lovely wife about the opportunity they could take to embrace hospice care:  stop the recurrent hospitalizations, be at home with their beloved family, and be an example, yet again, of courage and dignity.

At the inauguration of the 41st President, Mr. Bush stated, “I come before you and assume the Presidency at a moment rich with promise. We live in a peaceful, prosperous time, but we can make it better…”

I’d really like to be invited into the Bush’s living room. They’d probably be uncomfortable, everyone is when the ‘hospice girl’ shows up, but I imagine they’d be gracious. I’d like to look at their family pictures and pet their dog (if they still have one) and be clear that I am friend, not foe. I’d like to inquire with genuine empathy about the ‘patient’s’ current state of health and ask him about his daily sock selection.

We are all human in the living room.

And then I’d like to sit down and use the sentiment of the statement made at his own inauguration: even at a peaceful time, we can make things better.

I’d like to address Mr. And Mrs. Bush just Iike I have so many other families. I’d like to acknowledge the bummer of failing health and I’d like to introduce the possibility of a different end chapter.

I’d inquire about what re-hospitalization is like for him and how disruptive and potentially uncomfortable it is. I’d ask Mrs Bush about her fears regarding her husband’s health and what it is like for her listening to him breathe in the middle of the night.

Perhaps we would discuss what the couple understands about the former President’s prognosis and what their goals are.

I’d like to ask the former President about what he wishes for his legacy. Surely, someone who has spent so much of his life in service, and is so devoted to his family, likely cares about how people will remember him. I’d like to spend a long time listening to his response because it might take him awhile to respond. Its not an easy question.

Maybe someone who has had such a super human existence would not want to discuss issues surrounding mortality and end of life care. But it would be hard for me to imagine someone who spoke so publicly about what really matters in life, as Mrs. Bush has, wouldn’t want to consider quality of life support.

Mr and Mrs Bush might initially be put off by my questions,but I doubt it.   Most often, couples in their situation are relieved at the possibility of in home support. It would be hard for me to believe that they don’t understand, on some level, that sweet George is in a terminal process.

So after airing the discomfort and acknowledging the sadness, I would love to think that I could bring Mr and Mrs Bush to a place of understanding that hospice could help support each of them and keep the former President HOME and out of crisis. Nature is going to take its course, regardless. Like any family, we might need to schedule a follow up meeting with the adult children and grandchildren to confirm we are all on the same page,but if experience is any indicator, all parties will be relieved by an agreed upon plan.

SO, if you have read this far, I really hope that you haven’t wondered if I’m caught up in a “celebrity fantasy”. I do admire former President Bush and have great hope some palliative care resource will reach out to his family. My intent in sharing this illustration is very clear: do you have an aging loved one who's endured multiple hospitalizations? Does someone close to you have health issues and needs to define goals? Do you understand how UN-intimidating a “hospice” conversation could be?

Because here is my message: George H. W. Bush has served this country in numerous and extraordinary ways. If he and his family might accept hospice care and demonstrate the bravery and dignity of this choice, he and they, by example, might make their best contribution yet. An American hero, to be sure.

This. Is. Us.

Hopespotters, HELLO!

Given the feelings and sentiments we share here on HOPEspot, I am guessing many of you are “This Is Us” watchers. It’s been a week since William’s death. Are you OK?

C’mere.  We need to talk about this. Even if you don’t watch “This Is Us”, we need to talk about this. Please don’t quit reading if you’re not a watcher, I’ve still got something to say.

C’mere. S’OK. Have a cookie. S’OK.

To be clear for all readers, “This Is Us” is the hit NBC show that started Fall 2016. From the first episode, we met William, the biological father of one of the show’s leads, Randall. William abandoned Randall on the steps of a firehouse as an infant because Randall’s mother was a junkie and William was struggling with his own issues. In the pilot episode, Randall finds William and learns that William is struggling with Stage IV cancer. Randall brings William into his home, introduces him to his wife and daughters and watches a beautiful and redemptive love take place. William is appropriately remorseful for his past and refreshingly inspiring in his enthusiasm for the seeming last days of his life.

In last week’s episode-- SPOILER ALERT-- Randall takes William on a road trip back to his hometown of Memphis. Conscientious Randall brings maps that William throws out the window. William tells Randall to roll the windows down and turn up the music. Randall brings William to his childhood home where he pulls out a treasure of toys he buried as a boy. They visit the “gravesite” of Randall’s adoptive father. They laugh. They drink from the water fountain that was designated for ‘whites’.  William finally returns to his cousin, who he left in a bind years ago when he was called to take care of his beloved mother, and asks for forgiveness. Forgiveness is mercifully received and the two reunite to make beautiful music together.

There’s glorious joy shown on this father/ son trip until the next morning when William wakes up in total organ failure and needs to be brought to the hospital. Randall learns that William is imminently dying and their interaction from that point goes beyond Hollywood special and reaches into spiritually perfect. It is this point that so many of my friends broke down when watching. My dear friend, Ivette, is still in a puddle, and she is a warrior who knows life is hard.

What happens in that eleventh hour is everything, and I will tell you why. William, who met Randall as a child abandoning junkie, has been redeemed as a loving father and grandfather. William had an opportunity to give thanks to the Man who raised Randall. William gave Randall his final book of poetry. William was forgiven by his cousin. William told Randall his life was hard, but he was glad for who was there when he was born and who is with him as he dies.  Things that needed to be said, were said. Forgiven, forgiven. Gifted, gifted.  William was assured his legacy would be one of love and he would not be alone in death.

C’mere. S’ok.  It’s sad. And it’s hard to watch. I’m really going to miss William, too.

But now I want to say what experiences compels me to say and I don’t want to be preachy about it.

William did it right. William’s best chapter was his final one. It is for possibilities such as William’s that I push hard to promote hospice.

William didn’t die in hospice, but William had a hospice death. William had opportunity to complete his final work and did so, seemingly, with an appropriate amount of comfort. I HATED to see William die, but we, as viewers, knew when we met him, that he was terminally ill. We cried because WE GOT TO LOVE HIM and that was spectacular. It was going to hurt to lose him in any case. It hurt worse because we got to see the goodness in him. It should hurt less because we got to see the goodness in him.

William is fictional, but his loss was all too real for viewers. It was painful because none of us are immune to loss and reliving one in such a personal way brings all of those feelings right to the surface.

For a long time, I had some well rehearsed “talk offs” about working as a hospice nurse. “Oh, it’s a privilege to be there for families at such a difficult time.” Or, “I know I can’t change the outcome, but I know I can change the experience.” I believed, and still believe those things.

But what my humanity has come to show me unconditionally, is there is no treatment for the sadness. Even a beautiful death like William’s, is sad. I find myself with increasing years of experience more, not less, sad.

We had our annual memorial service for Weinstein Hospice this past Sunday. I love and dread this event. I believe the way we honor those who have died in our program over the past year is beautiful. And I know that time for remembrance is powerful for me.

This year two things stood out strongly for me. First, our chaplain read Psalm 23.  “Yea, though I walk through the shadow of the valley  of death…” Her words were unforgettable. Grief is the valley of death but the psalm reads that we walk THROUGH, we do not, though at times we might feel like it, curl up and lay down in it. Bravo, Donna Faye.

Then, she used her beautiful voice, to sing “For Good” from the Broadway musical, “Wicked”. If you aren’t familiar with the tune, its message is, “I don’t know if I’ve been changed for the better...because I knew you, I  have been changed for Good.” These words sang into my heart and expressed exactly how I felt about every person we memorialized that day. Each one forever changes us.

Back to William. And the sadness. One of the goals of William and Randall’s road trip was to get to “The Peabody” in Memphis to see the ducks. If any readers aren’t familiar with “The Peabody” it is a luxury hotel in Memphis that features a daily duck march to the lobby fountain and has since 1940.  William wanted Randall to see the ducks and that was the plan for the day that William got sick and died.

No ducks.

But in true, “This Is Us”, there’s redemption and magic in this life style, we, the viewer, see Randall driving back home, tearfully, and stopped on the highway by crossing ducks. The ducks remind him of William’s advice to “roll down the windows” and smile crosses his bereaved face.

For the bereaved who watch “This is Us”. Or who were at Weinstein’s service. Or who just read this and know loss:  C’mere. S’ok. I hope the one you loved left you with the peace the William left Randall. More than that, I hope you find the ducks. And roll down your windows.  “This Is Us” is a hit because it really is ALL of us. I’m sorry you are sad. Keep walking through that valley.

And never ever stop HOPING.