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.

Matt Ryan's Master Class on Grief

Friends: I make no bones about the fact that I am a die hard Atlanta Falcons fan nor would I ever deny that I am a Matt Ryan devotee.This year’s NFL MVP has conducted himself with an unparalleled level of professionalism and class throughout the ups and downs of his 10 year career and his phenomenal success this season did nothing to change his humble and gracious demeanor. As the mother of two sports obsessed boys, I am forever grateful for the example Matt Ryan provides on and off the field.

But even  if you are not a sports fan, please don’t stop reading, because I believe a message exists here for all of us.

The Atlanta Falcons loss to the New England Patriots in Super Bowl LI this February was acutely painful for fans, like me. After a surprisingly explosive season, the Falcons took us to the proverbial “promised land” but fell short in one of the worst collapses in sports history. Those passionately engaged in the game would agree it wasn’t just that the Falcons lost, it was how they lost. Crushing is not an overstatement.

For me, the loss was devastating. Many may think that because I work in hospice and have such a daily reminder of perspective in life, a football game wouldn’t affect me so deeply. I would tell you that I have a front row seat to the heartbreak in life on a regular basis. I have said, and stand by, that I believe what I do, what I get to see and the people with whom I work is all a part of a true privilege. But I am human and my heart breaks, too. Seeing my “team”- the good guys- win was something I felt I needed. I kind of thought I deserved it. There are losses I see and can’t control. I wanted - needed- this victory to restore my own personal sense of justice. It just didn’t seem to much to ask.

It didn’t end the way I/ we/ the city of Atlanta wanted it. And it hurt.

Yesterday, Matt conducted his first post Super Bowl interview on my favorite radio show, “The Front Row” on 680theFan. ( Driving around from hospice patient to hospice patient makes radio a very important part of my day to keep me grounded.) I have shied away from all major and social media after the Super Bowl because any mention of the loss was too acutely painful. But my loyalty to our hero, Matt, compelled me to listen. And I am so glad I did.

I am glad I listened for this reason: I didn’t think anyone or anything could make me feel better about the loss. Mock it if you will, but I’ve been grieving. However, the gentleman, Matt Ryan, who one would think might be hurting the worst, came across- genuinely- healthy, optimistic and content. CONTENT. And his words actually made me feel better. A lot better, in fact.

Let me be clear. If you are reading this blog, you may have found it because you’ve been exposed to hospice and potentially experienced loss. I don’t mean to compare a Super Bowl loss to the loss of a loved one. However, grief is a universal experience and there are commonalities we all endure. Sharing healthy coping strategies is purposeful and worthy. Matt Ryan, in this interview, demonstrates the very best in ways to appropriately move on.

(To hear the interview: www.680thefan.com - go to Front Row, podcast)

So here is what Matt has to allow:

1. He’s taken some time away after the Super bowl. He says, “don’t we all have to do that, regardless of our profession?” Yes. Right on, Matt.

2. When asked about if he thinks the criticism of his offensive coordinator and head coach is FAIR in light of their play calling in the Super Bowl: “Well, what’s fair? This is the world we live in.” What Matt was saying is a critical message for maturation: Chase fair and you will go NOwhere! Matt’s Irish Catholic upbringing comes out proudly from time to time and his response to what is fair is a perfect demonstration of what is worthy/ not worthy of contemplation and mental energy.

3. Matt admitted that he watched the game replay- three times the week after the game and each time alone. In the interview, Matt stated, “some people bury it” but he needed to watch the game, face the reality and move on. To be clear, when asked about the night of the defeat, Matt admitted purely, “it sucked”. He didn’t deny the pain and he didn’t rush the recovery.

4. Finally, and most importantly, Matt’s description of the Super Bowl experience was refreshingly honest. Matt was quick to accurately report, “we were in every part of that game. I played my best. Our team was very much in the mix.” The point here, that wasn’t lost on Matt, is don’t give all the focus to the outcome. No one is denying that. But just like we preach focus on how people live, not on how they die; Matt remembers that there was more to that Sunday than just the final score. And for that reason, he sounds healthy and prepared to face the upcoming season.

Recipe for Grief: Rest. Don’t chase fair. Grieve. Acknowledge life lived that is greater than the death.

I ll beat sports analogies to death and I will praise Matt Ryan to the end of time. However, if I want this blog to serve as any form of practically applicated help, I can’t ignore the lessons Matt Ryan taught in his first post Super Bowl interview. I share them because, despite what I believed was possible, he made me feel better. His pragmatic approach to loss that included acknowledgement, seclusion, and verbalization of the facts of the day have given me inspiration for the next day.

And it isn’t lost on me that it is Holy Week. Seeking the next day- enduring the pain of loss and staying intact for the HOPE of resurrection is what this week is all about. I don’t expect most readers to find that message from Matt Ryan’s interview (but it’s there).

My prayer is for any reader, deeply feeling loss and uncertainty, to see all the examples, the Matt Ryan interview being one, of HOPE for the next day.

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.