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. 

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.