The Eve

What were you doing 17 years ago tonight?

For many of us, it’s hard to remember what we were doing 17 days ago or even 17 minutes ago,  much less 17 years. Who can keep up with the details of daily life that long ago? What does it even matter?

17 years ago tonight I was home fixing dinner for my husband and father in law. I had been to the Atlanta zoo that day with my friend and her children. 17 years ago tonight was completely uneventful.

17 years ago tomorrow, it was a beautiful September day. I got up to go to work and listened to the radio on the way to my first patient. I heard about an airplane hitting the twin towers and was sad to think about such an accident. When I arrived at my patient’s apartment, in her memory care room, I watched, with her, the second plane hit the tower and we knew that this was no accident. Despite her dementia and loss of speech, this beautiful lady held my hand with the understanding of someone who had watched Pearl Harbor and knew this was an infamous day.

17 years ago tomorrow was September 11, 2001. The day that marks the worst attacks on American soil in history. 17 years is not enough time to wrap our heads around the evil that penetrated that day nor is it ever going to be able to provide reason or excuse for the thousands of innocents murdered.

At the 9/11 museum, in NYC, there is a beautiful wall of blue tiles that stands in front of the vault of yet to be identified body parts from that day. Each tile is from a slightly different dye lot, honoring each individual victim of that day. The wall has a quote that states, “No day shall erase you from the memory of time”. The blue on the wall is reminiscent of the beautiful blue sky on the morning of September 11th.

17 years ago tomorrow, the sky was so blue that no one could possibly imagine the horror that we were about to experience. The terror that would haunt us today.

17 years ago tomorrow changed each of us.  As a nation, we experienced unimaginable horror. At the same time, we enjoyed unprecedented unity. There are images from those days that we will never forget and there are some details that have been lost in trauma.

Did they really fly airplanes into our office buildings?

Did thousands of innocents die from box cutters?

Were we really that hated?

How can we possibly recover?

17 years ago tomorrow was an awful day. It was also a day that bears hideous similarity to what so many families facing advanced disease experience.

For many, there is a blue sky day. A doctor’s appointment. Just a check up.

There is no recollection of the night before because there was nothing that seemed noteworthy about it. And yet the not noteworthy night before will be the last time anything seemed normal- and one will wonder why that night didn’t seem more special in light of what the next day would bring..

“I’m sorry, we have to run more tests…”. “The results appear to be malignant…” “Treatment doesn’t appear to be having the success we hoped..”

Planes hitting buildings. Unimaginable outcomes with devastating consequences.

In my history of meeting patients  and families dealing with devastating circumstances, I can’t recall ONE who said, “I saw it coming”. Each and every one woke up to a blue sky before they received news that was catastrophic. None of them, not a single one, knew the night before, that the next day would be the day of no turning back. Even for those who might have suspected, the reality is shocking.

Cancer is a terrorist.

17 years ago tonight, I was naive to terrorism. 17 years ago tomorrow my whole world permanently shifted.

Tomorrow I will honor those that died 17 years ago. And I will give thanks for safety and perspective.

And then I will say a special prayer for those, who might be experiencing their “night before”and don’t even know it.

“He’s Dying Anyway”

This blog has never been a place for politics. And it still isn’t.

 

I must, however, weigh in on the current uproar about a White House aide making a comment about Arizona senator, former POW, John McCain.

 

“He’s dying anyway.”

I’ve heard sound bytes all day about this recent scandal, who said it, who is outraged, who believes its justified and I am only focused on the statement itself.

“He’s dying anyway.”

Many people, feeling people on both sides of the aisle have been offended by this insult to an American hero. People paying attention have responded with thoughts of “this person sacrificed so much for our country”... “he was a hero”... “someone I’ve admired”... “fought for our country”.  When these thoughts and feelings butted up against the statement “he’s dying anyway”, the vast majority of the national media has been shocked and offended.

Let’s be clear. It is terribly unfortunate, but based on what I’ve read and what I know from professional experience, I do believe Senator McCain is dying. Cancer is an indiscriminate evil, more powerful than a POW camp, and has chosen this man as its imminent victim. I wish the McCain family would use words like palliative care and hospice when communicating his condition, but they didn’t ask me. In my opinion, it would be an additional blessing of Senator McCain’s legacy to show the benefit of end of life care, but I am sure I don’t understand all the nuances. For the purposes of this discussion, it seems clear Senator McCain is nearing end of life as a result of his brain tumor.

So if what I perceive is true, he is dying. Why then, is it so offensive for someone to state “he’s dying anyway”?

My son started football training this week and it has been a roller coaster of highs and lows. One of the lows was his hurt feelings that another player called him “slow”. (Good luck making it in football if being called slow derails you, but that’s a different blog). My son was, more than hurt, stunned by the insult. As a Mom, I could only counsel him to say that words hurt, but we, as the recipients, control their impact. I also told him to feel sorry for the “insult giver”, because he clearly didn’t understand the big picture.

Whoever said “he’s dying anyway” didn’t understand the big picture. Because I am here to tell you what someone dying, especially someone who has a rich history and a loving family, like Senator McCain, can look like.

Dying anyway can, in its early stages, look like taking time to establish final legacies, have healing conversations and provide necessary forgivenesses. Dying, if acknowledged at the appropriate time, can allow for bucket list experiences and family preparation. Dying anyway can happen with dignity, comfort, lack of pain and family support.

Dying anyway, in fact, is an oxymoron. Dying my way, or dying this way, or dying okay are more of the things we should all work towards.

And finally, with holding political comments, I must directly address the person who dismissed Senator McCain’s opinions because he was “dying anyway”.  

Lady, I have had the privilege of working with the dying for the last 20 years. Every day I learn more than I teach and I return home stressed but blessed. I am sorry that you think dying is a capitulation and submission because I promise you that is not what I have experienced. The dying I’ve met have bravery and purpose that would humble a soldier. Their work is important and pertinent and nothing they do is irrelevant. I have seen the sickest people do incredibly strong things, finish life tasks and battle to leave a meaningful legacy.

Please remember the adage of the hospice nurse that asked the old man, “what’s it like to know you are dying?”  He replied , “what’s it like to think you are not?”

So I hope that when your time comes when you face the nearness of end of life, you understand the insult of your word ‘anyway’.

 

Healthcare Decisions Day and a Heroine

I am an admitted control freak. Not my best quality, but an undeniable one to be sure.

So when I have to admit that “things” have a way of working out, I am humbled to say the least.

I had a wonderful time away this weekend- relaxation and good times. Driving home and getting my ‘game face’ back on for the week, I thought about the days ahead.

Monday, April 16th is National Healthcare Decisions Day and I had already decided that the occasion merited a blog. Having seen horrible scenarios play out in ERs and ICUs, I am very passionate about everyone making it a priority to complete Advanced Directives to make their end of life wishes known. 

On my drive home, I thought about ways to emphasize the point about wishes. I thought about my childhood and my compulsion to make a Christmas list. The arrival of the fat Sears catalog was a monumental day for me as a child. I spent hours combing the pages, folding down corners and writing down the many toys I hoped to see under my Christmas tree.

An Easy Bake Oven. A Lite Brite “ultra” set. A Cabbage Patch Kid. A Swatch Watch. A Sony Walkman. Please and pretty please.

I made this list because I lived by two absolute certainties: I was loved and believed to be “good” AND Christmas was definitely coming. Everyone seemed to agree this was a helpful, and became ritualistic practice. When Christmas morning came and wishes were fulfilled, not only was I delighted, but the gift givers enjoyed satisfaction for their efforts. Win. Win. 

Today, I am (chin to chest) forty-seven years old. I still make a Christmas list and a birthday list. I don’t think I am greedy or entitled. I simply continue to believe that I am loved, those holidays are most certainly coming and it is helpful to let my loved ones know what would please me.

So here comes the annual “National Healthcare Decisions Day”. Let’s break it down, friends. You are loved- by friends and family. Hopefully a long way away, you will deal with an end of life scenario. This may be a sudden, catastrophic event or it may be a result of a longer, insidious illness. The brutal truth is, none of us are getting out of here alive. That reality of mortality feels out of control and makes it very easy to deny and ignore. 

Denying and ignoring is a mistake. A grievous mistake. A mistake that could leave your suffering body in an ICU indefinitely exposed to indignities and pain. A mistake that could change your legacy from one you’ve spent a lifetime building to one that haunts your loved ones with memories of tubes, monitors, alarms, and nothing that even resembles peace. A mistake that could permanently divide the people you love most while you are paralyzed to repair that rift. A grievous mistake, indeed. 

National Healthcare Decisions Day is really a marvelous day. It is a day sanctioned for preventing these grievous mistakes and promoting a different outcome. It is a day where all adults, young and old, get to make a list as precious as the one they used to make for Christmas, that details their wants and wishes. It encourages completion of a document that acknowledges the loved of its author and the inevitability of the time it will be needed. 

An Advanced Directive is the modern version, the updated and more practical version, of a living will. It is a simple document that doesn’t require an attorney but provides a checklist about some of the most important choices that need to be made in an imminently terminal condition. It only speaks for its author when he or she cant speak for themselves but it is a near “get out of jail (ICU hell) free” pass. Aggressive treatment and life prolonging measures are always the default for all people, despite diagnosis or age, in the absence of the blessing of an advanced directive.

http://www.caringinfo.org/files/public/ad/Georgia.pdf

So as I drove home today, thinking about National Healthcare Decisions Day, I prepared this plea.  And then an Advanced Directive in the mainstream media came before me and I could have cried with its demonstration of bravery. Things had a way of working themselves out, despite my control tendencies. 

WASHINGTON (Reuters) - Barbara Bush, the wife of former U.S. President George H.W. Bush, is in “failing health” and has decided to no longer seek medical treatment, the office of the ex-president said in a statement from Houston on Sunday.

The former first lady, who is also the mother of former President George W. Bush, “will instead focus on comfort care,” the statement said. She is 92 years old.

The brief statement did not indicate the nature of Bush’s illness but said that she had had a series of recent hospitalizations.


I drove home trying to think about how to write smartly about Healthcare Decisions but lo and behold a heroine stepped forward to lead by example. 

Mrs. Bush has always been a favorite of mine. I actually had the privilege of seeing her speak at a graduation when she shared the wisdom to which I have held tightly. Before I was a nurse who even considered end of life care, I heard this accomplished woman say with conviction, “At the end of your life, you will never regret having passed one more test, not winning one more verdict or not closing one more deal. You will regret time not spent with a husband, a friend, a child, a parent.”

20 years of hospice later, I cannot begin to tell you the wisdom in these words. Absolutely spot on.

So when Mrs. Bush announced today, on the eve of National Healthcare Decisions Day, her wishes for comfort measures, and in so doing releasing her family from guilt and responsibility for what they should “maybe”, I can only be in awe of her.

 Asking for a peaceful and uninterrupted end of life process isn’t as fun as asking for an easy bake oven on Christmas morning. It is scary and lacking with guarantees. It is however brave, loving, and motivated by the same premise of “I am loved and this day will come.” 

Friends, treat yourselves, gift your loved ones, follow in the example of a true American hero. State your wishes and bless your loved ones with the responsibility of honoring your wishes as opposed to guessing in crisis. 

Merry Healthcare Decisions Day!

 

 

Clenched Teeth

“And at the end of the day.. just give them my cell phone number. Please. It is my personal cell phone number, but I understand that a call for hospice information is a call from someone in crisis. I am happy to take that call.”

I do a lot of inservices with case managers, discharge planners, social workers and I end most presentations about hospice information with this statement.  I double down on the statement by distributing my business card - with my cell phone number- to attendees. 

And honestly, most days, even weekends or days when I am out of town, I take calls from unidentified numbers and talk to family members inquiring about hospice care. It is not the most boundaries thing that I do, and it probably serves some codependent need in me, but I think that I can help.

Wednesday this week, I was not officially working. I had fielded several phone calls, however, through the course of the day, while trying to juggle some personal errands. This is where the blurred boundaries get tricky. So at 4:00, when I was in the dentist’s chair, getting my teeth cleaned, I had NO patience for my phone ringing.

“Ignore it,” I said, with suction in my mouth. 

But it rang again. And again. And. AGAIN. No message left in between - just perpetual redialing. My children were not in my presence so I worried someone was in crisis. I couldn’t ignore it, so I jumped out of the chair - paper bib around my neck- and answered.

“This. Is. Jenny!” I said, through clenched teeth, in an unfriendly tone.

“Hello. My name is John Doe and my wife has Alzheimer’s. I have been caring for her by myself for five years but she is ...is…. is… not good… Susie Jones in my support group suggested I call you..”

I am not proud of my response - that was driven by lack of boundaries I had allowed.

“Uh, yeah, HI, John Doe. I am not available to talk right now. I am in an APPOINTMENT. IF you listened to my voicemail, you would have heard the number of our intake desk. I suggest you call them and they can help you.”

“Oh….. um, ok.  It is just that Susie Jones suggested your name and…”

“Great. So you’ll call intake and they will take care of you. Goodbye.”

And back in the dentist’s chair I hopped, indignant from the interruption. Checking the status of one’s teeth is really an insight into one’s health, is it not?

Just about 48 hours after that phone call, I was ringing John Doe’s doorbell. He had, in fact, gone ahead and called intake. He was seriously considering hospice for his wife and an evaluation was deemed appropriate. I am the evaluation nurse, so it was on me to show up at his house at the agreed upon time. As luck would have it, traffic was bad, so I was running late. I called to inform John Doe and he was clearly irritated. I was irritated with this visit. 

When John Doe opened the door, I addressed him properly as Dr. Doe. He asked that I call him John. I apologized for being late. He told me my outfit was “very fashionable”. I softened.

John led me to the living room and I was struck. The carpet showed the clear marks of a removed coffee table. One MILLION times I have bemoaned the ever present glass coffee table in confused patient homes, worried about its potential as a cause of death secondary to a fall. The vacancy of the coffee table in this living room was so striking, I felt a little badly about my previous arrogance and preaching to families that it “has to go!” It leaves a void. An undeniable metaphorical void.

Dr. Doe, or better known as my new friend, John, treated me with heartbreaking chivalry. I noticed his shirt and slacks were clean and well pressed and I thought about the effort that must go into presenting that way.  An 81 year old man who had either had to learn the business end of an iron OR find a way to get to and from a dry cleaner. When he sat on the couch opposite me, he had already laid out beside him a legal pad, a pen, a picture of his spouse from a healthier time, her driver’s license and Medicare card and a brochure about hospice and dementia.

It was more heartbreaking than flowers and well wishes placed at the site of a recent trauma. There was an obvious trauma here in this house. Things had been rearranged because circumstances had been rearranged. 

John proceeded to conduct the interview with formality and I believe he was initially surprised that I had more questions for him than he had for me. As he told me about his wife’s condition, I gathered that she was likely a FAST 6 (incontinent, requiring assistance for all ADLs, barely ambulatory, barely verbal). I also learned that John was doing her care- beautifully, I might add- all by himself, every day, for the last 5 years. I explained hospice, Medicare criteria, private duty care, and services available to John and he took copious notes. I also learned that John’s beloved had been a critical part of developing one of Atlanta’s most beloved landmarks, was a well known horticulturalist, and spoke fluent French.  John  proudly shared her picture from “before”. 

It was then time to see John’s wife who was safely in bed, in a room barren of potential safety risks. I believe I was right about her FAST level. She held my hand and told me she was, “happy” and grabbed my hair to say, “pretty”. I loved her. She was peaceful and kind. She also had no idea who John was, where she was, or that she was soaked with urine. I’m certain that happened while John and I were speaking because all other indicators showed meticulous care. 

This whole thing- story and details- is about what happened when John and I went back upstairs. I was ready to conclude the visit and inform John that I would request records and an order from the doctor and see what we could do to help. I was nonspecific because she seemed borderline. But as I tried to inform John about the next steps and compliment him about the care he provides, he said this:

“It would be nice if you could send some help. Sometimes I speak to her with clenched teeth. I don’t like when I do that. It is hard to be patient because everything she does takes so long. And I don’t know her anymore. But I get frustrated, and I shouldn’t talk to her that way.”

Tears welled in his eyes and dripped on his starched shirt. 

“Well. So. You will be in touch Monday, yes?”

And I assured him I would. I complimented him again for his good care. I reminded him he was human.

He crafted for me the best way to get out of his driveway. And then said thank you.

It took me about 7 K turns to get out of the driveway but I was already in tears on the 4th one. Dear God. Caring for a demented loved one is SO. INCREDIBLY. HARD. Thankless. Merciless. Hard. 

But I wasn’t teared up about that because unfortunately, I see that a lot. I was teared up about John’s shame from speaking through clenched teeth. I was teared up about my own shame from speaking to John through clenched teeth. Patience is a precious commodity, it seems. 

The moral of this story is likely obvious, but I think no less worthy of stating. IF you find yourself speaking through “clenched teeth”- as nurse, as caregiver, as parent, as teacher, as HUMAN- ask for help.  Frustration is an authentic response and not one to be shamed. And remember what Mr. Rogers said, “look for the helpers. Always look for the helpers.”

John. I am sorry. Help is on the way.