Tag: attitude

STATING THE OBVIOUS

March 28th, 2016

Some say: people want to know when they are dying. Some say: people need to be informed. Some say: doctors should be better prognosticators. Some say: denial is a good thing.

We all have our biases. I have had the awesome privilege of listening and participating in many variations of end of life discussions. I think most everyone I have known have seemed to have an understanding towards the end of their life that time is running out.

My patients have come in all sizes and colors. To name a few: there are the “engineers”, who want to know every last detail, usually with a scientific bent. There are the “emoters”, who need to have a whole lot of sympathetic listening and sometimes enjoy creating a scene for their families. There are the “Peter Pans” or “Pollyannas”, who only want to hear the upbeat side of things, don’t even mention the “D” word (dying) or the “H” word (hospice), please. There are the “Do-overs”, who wallow in their regrets to the very end. There are the “warm stoves”, loving on everyone they touch right through the end of their lives. There are the “prickly pears”, who won’t let anyone near them, suffering in their own scourge of unhappiness. There are the “hermits”. who prefer to find refuge in their thoughts, and often die alone, when everyone steps out of the room.

Some say: you die the way you live.

I made my last visit to Jenny, her own unique self, so pragmatic and determined and also a great denier of the obvious, who had challenged me so often during our time together. Her symptoms were difficult to manage as she tenaciously hung on to life; now she was less and less responsive and mostly nonverbal. At this visit I did some nursing tasks to improve her comfort.

Then I whispered, “You know you won’t be here much longer.”

She looked into my eyes and said, “Let’s not talk about it”.

Oh, so Jenny, I thought. She had asked me, a few weeks before, what it would be like, when she began to “really die”, and how would she manage, and what would I do for her, and would I please tell her when the time came? I try to answer these questions honestly, knowing that some disease processes follow certain patterns at the end of life, and also knowing just like the child who asks where do the babies come from? that the information can be more than what is expected or wanted. I also try very hard to answer what underlying fears I hear in the questions. “Will I be aware; will I suffer; how long will it last?”

Even though she may not have wanted the answer I gave to her question, she quietly held my hand and told me thank you as I left, and she died the next day, without much fanfare, just a few slowed breaths while her family sat vigil.

No one really knows how the end goes, till they get to the other side. I only wish they could come back to share with the rest of us. I do know, and have been reminded by my dear patients, that we only pass this way once; and every day matters…so make it count.

“When I get to the time when I leave this body, I will never say that I lived a half-lived life.” Wayne Dyer
WHAT AN OVERCOMER LOOKS LIKE

February 16th, 2016

Ettie never told me that “My mission in life is not merely to survive; but to thrive; and to do so with some passion, some compassion, some humor and some style.” (Maya Angelou). But she had lived this… She thrived.

Now her life was about waiting. She had grown more patient with age.

The piquant aroma wafted down the hallway, rising from the kitchen stove where a pot of soup was being stirred while Ettie and I were quietly talking in her room. I had become accustomed now to the coming and going of neighbors and family members who would peek their heads around the corner to check in, and usually head for the kitchen to taste the always ample supply of something savory. Ettie was surrounded in her little bedroom by pictures that told stories of both dead and living family members and photos taken in her younger years (she was such a fashion statement with a huge grin like a “cat that ate the canary” that showed how vitally she lived her life!) At the bedside table was a bouquet of flowers that her daughter made sure were fresh from the flower garden out front of the old bungalow. She hadn’t eaten much these past few days, and her loving daughter was trying to tempt her with all the best family recipes, while sharing secrets of seafood gumbo with me. Ettie was diminished to an emaciated 87 pounds; her huge dark eyes sunk deep into her wrinkled, smiling face, with a shock of dark corkscrew curls tinged with grey that belied the fact that she was nearly 90 years old.

I had not felt completely comfortable at first, appearing an oddity in a neighborhood where my ethnicity was noticed as I carried my nursing bag into their multi-generational home. But Ettie set me immediately at ease, with her southern drawl and hospitality, making me feel as though I was many miles away on a porch swing sipping sweet tea. I was also welcomed by her daughter who shared the cancer story with hints of anger at the medical system: “Mom’s doctor wasn’t really paying attention to an old woman with aches and pains, not giving her any treatment” until her disease was very advanced and then being told “there was nothing more they could do”. Her daughter was overwhelmed with the coming and going of life; in the midst of the “sandwich generation”, trying to juggle her work with the care of her mother (which was daily becoming more burdensome) and her own daughter who was now hugely pregnant. Everyone was visibly harried, readying for a new baby shortly to enter their household and an ancient matriarch soon to leave this life: frantic preparations, doctor appointments, family coming and going at all hours.

Except Ettie, who seemed the very picture of serene repose. She patiently lay in her bed, and relished the anticipation that exuded from every crevice of their home, and was excited without being nervous about the things awaiting their family. There were frequent jokes about her queenliness, as she ordered the family around and made sure her recipes were followed; the supervision was gladly tolerated. She told me she had “tried a lot of things to stay a little longer”, but was ready now to “go be with Jesus”.

But not quite yet. “I’m gonna have to hold that baby first.”

I heard many stories about her growing up years in Louisiana, the youngest daughter in a sharecropper’s family of 9, and how she got out of the generational poverty when she moved to the northwest, went to college, and became one of the first “Black women to graduate from the university”, along with her older sister. I could visualize her momentous achievement punctuated with that huge smile that lit up her beautiful face.

“Overcomer” is the word that comes to my mind. Overcome the naysayers, who believe you cannot jump out of the mold you were born into; overcome the constraints of poverty and prejudice; overcome the self-doubt, and become a person who can look back on their life and be proud at the obstacles surmounted, the accomplishments attained, and the loving family that surrounds your bed as you are exiting this life.

Ettie had told me her plans to last until she got to hold her first great grandchild in her arms. No surprise, the woman who had overcome so much in the prior decades, she even overcame a body riddled with cancer just a little longer. She did indeed survive just long enough to smile that contagious smile while holding a new little great granddaughter who battled her way into the family, and they took pictures to last past a lifetime with all four generations of overcomers.
GRADUATION DAY

June 2nd, 2015

Difficult to escape from my day job, I find myself honing in on statements while I am entertaining myself in the evening. Such as from the movie Beginners, when the son says, “You’re not getting better, there is no stage 5 …You have stage 4 cancer…”

And his father says, “That’s not what it means…it means you’ve been through 3 other stages.”

(Ahhh, denial is a wonderful coping mechanism!)

Then when the father goes into his next medical appointment, he hears from the doctor, “Hal, You don’t need to come in for any more treatments”. And he asks, “Is there something wrong?” Doc says “It’s best you stay home, hospice can help you more now…” (I always tremor at the assumption that when ALL ELSE FAILS, hospice might be a worthy consideration… Last ditch effort… Anticlimactic ending…rarely presented as a treatment decision in itself, choosing hospice). Hope does survive, though, even with hospice.

In the same week I listened to two people, in very different scenarios, who both received a life-limiting cancer diagnosis that suddenly rocked their worlds. They shared the same end of life goal, “I want to be at the high school graduation”.

Greg speaks in a bold voice that he plans to “Fight like hell”. His doctor has told him there isn’t much available for treatment, but Greg has a young son with many years ahead who needs a father. He shares about his experience in the past, one of those “near death” events. He lay in the street with a mortal wound and felt his body separate, and like Superman, the part of him that was conscious shot like a bullet through the sky. Until this sudden motion disintegrated into shards of energy and he found himself again joined to the earthly body, full of pain and struggling to breathe, and he realized there was still life left and he heard himself from a distance say: “Not yet. I’m not dying yet”. He has that same realization today. When he receives the prognosis for the cancer that is invading his blood and bones, he says out loud, “Not yet. I have to be here for my son”. Hope survives.

And Char, who only a month ago was enjoying the creative expression she finds so meaningful in her writing and music, now has difficulty playing her instrument because the cancer has zapped every molecule of energy and she has to fight to stay alive. Her medical team didn’t expect her to survive the discharge from the hospital, yet here she is: alive for another week, another month, hoping to see her daughter reach adulthood. Shyly she tells me, “It sounds a little weird, and maybe you won’t understand. I experienced it. I came through death, to the other side, and now I am not afraid. But I have so much to live for.” Hope rises.

I listen as they tell me about their hopes and fears. I am certain none of us are completely free of fear, when death comes knocking. Life is so full of sweet surprise, and love is shared every day on this earth, and that makes leaving it behind a lot harder. Acceptance does not preclude deciding to grasp every day, and reach for your goal. And hospice does not mean an admission of defeat without hope, either. I have heard so many stories of the shock and sadness, and amid that, the burning determination to reach the goal, whatever that might be. Life holds hope in every breath we take. Another day, another week, another month, with moments shared now, memories made today, and always hope… just to be another day closer to graduation.
HEARTS, FLOWERS and BUCKET LISTS

February 7th, 2015

Hearts and flowers and sweethearts and love are mentioned everywhere in February. I frequently have opportunities to see gifts of love highlighted by the stark light of loss. This week, a bright bouquet of sun colored flowers were featured on the table as I entered, and Liza told me her partner had brought the daffodils home, (those reminders of spring just around the corner), to cheer her. She had been taking care of business, her explanation to me, “I don’t want to leave things undone for my family to be burdened with”. The final plans were her funeral arrangements, which only 4 months ago had not been even a faint line on the horizon and now loomed in the near future. She wouldn’t be here when spring arrived.

Regardless of how many times I have heard people list the business of their dying in plain, ordinary terms, I am so often deeply moved by their acceptance of a life cut short, with the sudden crushing cruelness of a disease robbing them of the years that “could have, should have” been. There are no guarantees that a person gets 70 or 80 years in a lifetime. I had witnessed Liza’s physical decline just in the past two weeks with much of her day now spent lying in a recliner in the living room. Liza was sad and tearful at times during our visit, but there was a resolve and steadiness in her voice that I had not heard before. I asked her what was left on her “bucket list” and after a pensive pause she told me “Nothing’s on my list, but the time I have with my family. There was a time when Australia would have been my answer. But having my daughter here with me, the time we have been able to spend together; that’s all that matters”.

The term Bucket List was popularized in one of my “must see” movies with the same name. It’s a story about two men who both receive life-limiting diagnoses of cancer, who proceed to “carpe diem” the time they have left and complete a list of life-long desires… having some amazing adventures together, things that required a lot of money and energy… and in the end, recognizing the real “bucket list” was right in front of both of them: people they loved and that loved them.
I think about some of the things I would still like to do in my life, and realize, like Liza, most of those wish-list items would be swept away in a moment, if I only had a little time this week. I would hug my kids harder and love more, and want to squeeze every last drop of time to put into my relationships that I will have to leave behind. And as so often happens to me as I leave a patient’s home, I am thankful for the shared gift. The reminder to see what is right in front of me.

February is a month about Love. Don’t miss it.
DYING WITH YOUR BOOTS ON

July 7th, 2014

Something I love about my job as a hospice nurse: there are many opportunities to be surprised. One of my daily mantras is “expect the unexpected”. As I drove down a switch-back gravel drive in the middle of nowhere, I pulled into a driveway and there in a sun-warmed grassy yard sitting perfectly still on a garden swing among buzzing bees and newly bloomed flowers was a fellow in a crisp white shirt, a matching white cowboy hat, black leather boots and a crooked smile. I stepped out of my car and told him for a moment I thought he was the garden scarecrow, until he tipped his hat. He laughed jovially and announced, “I’m Billy”.

Yes, of course, I thought, you are my patient… though you look the very picture of health and personifying, in fact, living while dying. He shooed chickens away as we went inside to talk about hospice. While we talked over the next hour, I heard some of Billy’s cancer horror story. None of us forecast hearing the word cancer during a routine check-up, and especially when the expectation is to get a prescription for a recurring infection and not be back in the doctor’s office till next year. For Billy, intertwined in the stark unfairness, chemotherapy failures, and overwhelming life changes was an underlying humor that buoyed his speech and infected the room. Just as one of the nurses who knew the family well had predicted, I was taken in. This man, and his caring hoard, would “get under my skin”.

And as I got to know him better, I couldn’t help but rail sometimes as an observer of life’s injustice. Just when you have figured some things out, just when you have changed for the better, just when the garden is ripening and life seems to be travelling in a more fulfilling, rewarding direction… Billy tells me, “When they get sick of me, I’m taking a bus to L.A.” (We laugh together when I recommended a very bad neighborhood). He and his wife joke about recent quarrels, “Who gets the walker?”

He has the most adventuresome bucket list with things like a trip across country, hunting with his brothers and fishing in Alaska planned, even though the oncologist ominously recommended “getting things in order” and answered the “how long” question with “maybe a couple of months”.

Billy is a constant reminder that attitude is everything. As I get to know Billy, I recognize some of his blustering and joking camouflages an underlying fear of what it will be like, in the end. We have some conversations about what this means for him. He worries he won’t be kind to his family or that he will be the cause of additional guilt and suffering for them. He shares one of the most common fears I hear, that he “doesn’t want to be a burden”.

Billy, like all of us, owns a story that isn’t all laughter, and he spends some time in the end sorting through some desolate memories and letting go of the regrets he wears like a jacket. His wife assures him that love will cover the messy parts of dying, and his family members are not burdened but in fact they feel privileged with sharing these final days of his life, whatever that might look like. (They were in fact some hard times for everyone.)

And in the end, what really didn’t surprise me too much was that Billy managed to complete his entire bucket list and die with his boots on, so to speak, catching everyone a little unaware, but going out with great style.
LIFE IS LETHAL

February 22nd, 2014

I read the word lethal in a poem, it leapt from the page and I had to stop a moment to consider the impact of the word; for us as humans, for a hospice nurse who watches people in their last hours and days.

So many things are lethal in our lives. Choices we make in our daily existence are
often lethal. I spent five and a half hours sitting on an interstate highway where traffic was literally standing still due to weather conditions, and later found out the emergency response agencies in the state described motorists “in a lethal situation”. I listened as a family member described a loved one’s drinking habits as “lethal”. I watched a TV show and was inundated with the number of lethal decisions made by the characters in the saga of good versus bad. I read a note from a social worker regarding a recent patient admission, and the person’s desire to take a “lethal dose” of medication. I made two visits in the same day to people who were experiencing the last moments of their life’s
lethalness.

Just like when you buy a new car and everyone seems to have one the same make and model, I heard the word lethal thrown around casually almost daily in a week’s time.

Naturally, this made me curious as to the origins of the word lethal. So I researched the word, and found that lethal in Latin: “letalis”tanslates equivalent to death (in Greek: lethe, oblivion) the word meaning of or causing death; deadly; fatal.

And I thought of the human condition, a lethal one.

The day we arrive in fact begins our lethal journey in this life. Although filled with choices that may hasten the lethalness, (such as being stupid enough to stay on a highway with cars careening about!) even with the best of choices made, our lives remain the very
essence of lethal, for every human dies regardless of the life that they live. This does not fill me with reluctance to live less responsibly, or with utter disregard for the value of this day, but instead makes me want to give today my best, not waste time expecting to
find more tomorrow. No, like Mary Oliver, I have to ask the question,

“What will I do with my one wild and precious life?”….
THE TRAIN WHISTLE

January 6th, 2014

Lying awake and listening to the train whistle in the early morning hours makes me want to get ready for a trip. It also reminds me of the messages people share as their lives ebb and they prepare for their final journey.

Edna, an elderly woman with some dementia, repeatedly asked for the car keys to get home, and her loving daughter understood the message. She patted her hand, and let her know she could go whenever she was ready. I listened to Jack, an old hiker and woodsman, ask about his dog and ready himself for a hunting expedition. Little Jamie was planning a new trip on his flying pirate ship, and always winning the battles along the way. Bob, who had built planes for a hobby and flown into his eighth decade, talked incessantly about the skies’ condition and whether it was safe to fly.

“I have to go, I have to go”, and no one asked where, when Viola repeated this mantra in the last few days of her life. We knew, in the right moment, she would indeed go.

Since I was very young, hearing a train whistle has sent a little thrill within me, and I visualized arriving at some unknown destination. The anticipation of an adventure was hard to contain; though still in my bed I had these images of train hoppers going to other places. My grandparents lived in a house nearly as old as they were during my childhood years, and the train track cutting the town in half was behind Grandpa’s garden, not many yards from the back door of the house. The train whistle is an imbedded memory I have of their home, more than the colors on the walls or the rickety old stairway leading to the bedrooms.

How I loved being wakened by that mournful keening sound in the early morning before the light had fully changed things from darkness, and the trees stood like faded grey monoliths outside my dormer window. For me, the train was an omen of future pursuits and bold undertakings.

People have expressed to me in many ways their anticipation of dying, many with dread and avoidance, but some with expectation and even enthusiasm. As they travel the great
chasm from this life through their death, the journey is described much like the ones they travelled during this lifetime, by boat and plane and car and train…and sometimes we who watch can see the glimmer and sparkle of suspense, and yes, even excitement, as they board the train.

“Life is either a daring adventure, or nothing.” Helen Keller
LUCKY TO BE ALIVE

December 8th, 2013

“Flying the friendly skies” is still a slogan, and as I boarded my flight I thought about Albert Einstein’s most important question to ask. “Is the universe a friendly place?”. I said to myself, “I hope so”… as I put my trust in an airline, a flight crew, some lousy weather and a whole host of people I don’t know.

The one time I break down and buy a junk magazine is when I forget to pack something to read for a rather long flight. (I remembered my Kindle as I was about to board the plane, only I visualized it at home charging up.) Instead, I grabbed the magazine that caught my attention, with a younger woman on the cover. a beautiful smile, and a caption of “I’m lucky to be alive”… a cancer survivor, following a double mastectomy. A number of famous people have recently been in the limelight as they battle cancer.

My niece is only famous to those of us who know and love her, but at 34 she has now undergone a double mastectomy, a hysterectomy, radiation treatment and a year of chemotherapy. Who would have imagined such a whirlwind of medical intervention when she was celebrating her 33rd birthday? I am reminded of the fragility of life, and the simple statements that medical professionals make that change everything. “The tumor is malignant.” “You will need surgery.” “You will need chemotherapy.” “You will need radiation.” And a new favorite…NED. “No evidence of disease.” Four simple words that shake your world.

My niece has a young family and a career, and so much to fight for, and live for. I can’t help but think how everything is relative. What seems like an unfair thing to deal with at one person’s young age, in another person’s life, would be a small miracle to survive to. Some I have known: The baby boy who lived past infancy but never made it to preschool. The beautiful girl-child who never quiet reached puberty. The pre-teen who was on hospice, only to survive and actually reach adulthood.

I am constantly reminded that none of us have a guarantee. And it doesn’t quite make sense to me, how one person’s life here ends after a few years, or a couple of decades, and someone else is celebrating their 95th birthday this week. It seems so random.

Yet my niece would tell you what she has learned and shared with the rest of us, tremendous lessons this past year. It all has meaning. Take nothing for granted. Live each day, in the knowledge that it is a kind of miracle in itself. Believe the saying, “Today is the first day of the rest of your life.” It’s all we really have. The Now. This moment.

So even though I spent good money and bought a dumb magazine, I thought today about the gifts I can celebrate: health, life, love. In our own corner of the world, with our sphere of people that care for us, this is today’s miracle. And yes, I do believe the universe is a friendly place.
THE FIDDLER

April 7th, 2013

I watched an old movie last week, Fiddler on the Roof. We all ask what is the fiddler doing up there? Tevye, the main character says, “Every one of us is a fiddler on the roof, trying to scratch out a pleasant, simple tune without breaking his neck. It isn’t easy…” Somehow, the fiddler on the roof finds a balance.

I watch as my patient with a rapidly debilitating neurological disease is losing his ability to be upright. Yet, he propels himself forward, leaning his torso first back at a crazy angle, then to the front to gain momentum. I have to grip my arms to my sides not to reach out and grab him, fearful he is going to fall. He doesn’t want me to help. And yes, some time he likely will fall. But not today.

He has things he wants to get done. He tells me, in the voice that is now becoming breathless and nearly unable to form words, that when he can’t move anymore, he doesn’t want to be here. But there are so many things that he wanted to do, and now he knows that there isn’t time.

He wrote a note for me, and as I read it I realized how hard he’s working to keep his balance. Wistfulness and grief were in the words written simply, “I thought I would have the next twenty years to do this, I didn’t think I would be dying now. I’m very sad.”

The other things he has written were about symptoms that if I added this medication, or changed the dose on another, the symptoms would at least improve; not go away, but be better managed. I make some suggestions.

Then I tell him, “About this other part, the dying. There isn’t a pill to fix this.” He smiles and shrugs his shoulders and whispers, “I know”.

He still laughs, and makes a joke about the bowel thing that we always have to talk about. I think of the fiddler on the roof, and I hear the sweet, melancholy music that he plays
as he strikes a simple tune, and keeps his balance.

“It isn’t easy…” The word Brave comes to mind, beyond what
most of us can imagine.
MIRROR MIRROR

January 21st, 2013

My last visit with Ida and she grouches a little at Gerry while she tells me she definitely has good days and bad days. “Today is bad.” This is rare: to hear a cross word exchanged. Gerry has helped with all the daily chores; even though they have some hired help, Ida prefers to have his assistance with her personal care should she need it. I review, yet again, the team members who can be available to Ida, like the bath aide, and she tells me, “I don’t like people seeing me naked. I have small breasts,” (and she laughs with gusto). I don’t mind if it’s Gerry …..After all these years I still think he is a lovely man. Look at him. He is a great man…”

As I look, I witness a shared expression that is filled with loving sweetness.

Ida comments “I have a lot more worries than just physical. The thing I worry about more is my emotional state”. She explains that she looks in the mirror and sees this person she doesn’t even recognize. “I’ve been facing this all very nicely until I see her: Who is that ugly woman? Who is that person, that nasty person that looks so awful?”

Gerry of course tells her she certainly doesn’t look awful, but Ida wistfully looks at their framed anniversary picture from not that many months ago, when she was shiny and healthy and proud that she still fit into her seventy-one-year-old wedding
dress and wasn’t feeling weak all the time, with an underlying achiness from the tumor growth that she seldom mentions.

Now she is thinner every day, while her belly grows larger.

Then she says “I have had plenty of time to think about all this. To decide where the funeral should be, and imagine who will be there. You know, I have my belief in God that has been a comfort to me all these years. I have a spirituality that has deepened and I don’t feel at all afraid, like I know some people do. But I worry about not being able to have this happen the way I see it.”

When I ask to know more about that, Ida tells me, “I want to be remembered in a kind way, not as some mean person, you know: a bitch!” and she shakes with laughter.

Gerry, who is hard of hearing, has to have this repeated as he scoots his chair closer and says, “This is simply not possible, for her to be a bitch”.

As we all laugh together, I think to myself about the unadorned honesty of the dying. And the moments of intimacy that I get to experience with people as special as Ida and Gerry. I will miss them both.

The three of us do some problem solving together, taking care of a few of the practical aspects of improving her days whenever possible; while understanding some of her
frustration and irritability and easing her fears of becoming someone heinous: in fact she is a person experiencing dying.

I say a brief silent prayer, for a mercifully gentle passing for this beautiful woman with such concern for others, such intrepid humor, and such unfaltering love.

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