To the dear friends and family attending our hospice patients..

This is a heartfelt letter to the friends of families receiving hospice care.

Dear Ones,

First and foremost, thank you. Thank you for being present with this friend and family who is facing the very scary prospect of end of life care. With your heart and spirit, you have continued to be present with this person in the darkest of hours and we, as hospice providers, appreciate your courage and friendship.  We know from numerous studies that people fear loneliness at end of life so your continued presence and support is both wonderful and necessary.

I/ we have a request, however. We, as hospice providers, believe we are all in this together and we want/ need to be on the same page with the friends and advisors that are in our patients’ ears.

Here’s the thing- we know that talking with a hospice patient/ family is difficult. Their circumstance is overwhelming and our human nature compels us to offer help, to better a situation. The truth is that hospice is hopeful and helpful and wonderful but often times very, very hard. Families are required to provide care they never expected and the grim reality remains that the patient is not going to “get better”. The realities of hospice care with the combined efforts of the hospice team and the family at bedside can be difficult/ harsh/ scary/ exhausting.

At Weinstein Hospice, and any quality hospice provider, there is diligent work done to reduce the stress/ burden on the caregiver. However, the truth about providing care at home is families have some extraordinary responsibilities. Sometimes the personal care that is required seems untenable. And things get very, very hard.

Here’s the thing I/ we need you to know: church friends, neighbors, out of state relatives, etc. If you have entrusted the care of your dying loved one to a quality hospice program, like Weinstein Hospice,  you need to feel confident that the clinical staff is making all the necessary assessments to provide the right level of care.

Unfortunately, very often we get calls from tired and scared family members saying, “So and so told me I should be getting XYZ…” Or, “So and so said when her Uncle was dying, his hospice did, blah, blah, blah, blah…”

We hear you. Those calls penetrate all of us on our team because they let us know there is fear and unrest and there is need for a response.

What those calls don’t necessarily indicate is the Medicare requirement for continuous care or acute GIP.  Those requirements are strict and clear and a proper hospice will not push the limits on those distinctions. We can’t. The financial and regulatory ramifications would be devastating, especially for a small non profit like Weinstein.

But here is what I say to you, interested, devoted, trying to be helpful friends and family.  I understand how hard it is to look at an exhausted caregiver and not offer a brighter alternative. Believe me when I say I have cried in my car more times than I can remember leaving a family terrified, despite the reassurance of the 24hour hospice number.  I know, Cousin Sue, that his wife shouldn’t be changing his diaper. But I also REALLY know the Medicare criteria and I can’t change benefits that don’t exist.

So desperate to help friends and family, please hear me when I say, I know how badly you want to say something helpful. I know that believing hospice should do more for the person you love who seems exhausted feels helpful. I beg of you this: PLEASE do not tell a friend facing end of life care what hospice SHOULD do. IF they don’t have hospice, please encourage them to engage that resource. But if they have hospice in place, it would be most helpful to suggest that they let their team know how difficult things have become to manage.

When trying to be helpful “others” make hospice families believe they are entitled to something they are not getting, without fully understanding the Medicare requirement, they are only disrupting the palliative process.

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.

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: - 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.