hospicediary

IN THE MOMENT

November 5th, 2015

“I’ve taken care of things all my life, and I’m doing the end planning, too, because that way it will be done to my satisfaction,” says my 91 year old patient. She’s completed financial affairs, even has her funeral expenses paid in advance including placing where the ashes will go. We are sitting in her perfectly disposed living room, which she has maintained all these years and only recently realized a housekeeper might be helpful as she has that bone weary fatigue that accompanies advanced cancer. She doesn’t have the energy sometimes to fix a meal; her only relative now and then drops one by for her.

I, being a good hospice nurse, ask about her plan when she can no longer care for herself. Having been a hospice volunteer, she knows what it looks like when people get close to death, lying in their bed, unable to do anything for themselves, with caregivers spooning medicine in their open mouth. She has sat with many a dying person, and knows the effort it takes when caring for someone around the clock requires more than just delivering a meal, or sitting companionably visiting.

She doesn’t have a “plan B” yet, she says, though very aware it will be needed. “Yesterday is gone. Tomorrow may not arrive at all. I am here now. I’m just glad to be here now, and having a good day.”

“You are so right,” I reply, enlightened. Now is all we have. And my aged dying patient reminds me of this. Call it denial. Call it lack of planning. Call it procrastinating. I call it inspiration, and realize how lovely it is, for her to have now, and relishing now while knowing full well what is to come, but choosing to not worry about it. She tells me she reached this state of peace about two days ago and has “slept like a baby” since then: “Just be glad for today. It’s all we have.” Who am I to tell her differently?

I suddenly know I am sitting in the presence of wisdom, and I don’t try to correct her with my superior hospice knowledge. I understand, like those who survived the concentration camps, she is experiencing something I have not yet, (losing everything that matters),and she is infinitely wiser than I, to enjoy this day and not stress over what needs to happen. She knows we, her hospice team, will do that for her, and be fretting over the fact that no “plan B” is in place.

She is practicing being here.

She has given me my new mantra and I’m trying to pay attention.

“Everything can be taken from a man but…the last of the human freedoms…to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

Viktor Frankl
BEING LED

October 13th, 2015

“The truth is, when you were young, you tied your own belt and went where you wanted, but when you are old, you will put out your hands, and someone else will tie your belt. They will lead you where you don’t want to go” (John 21:18).

I woke up to bright light streaming in my window and bird song telling me
this is another day to be joyous and thankful for life. I thought of Ed, who didn’t wake up today; yesterday was his last. He had spent a difficult day less than a week ago, wanting “to do something for this to be over”, thinking if he could just end his life quickly how much easier things would be. He had told me “I didn’t have the guts to do it” though we had reframed this and spoken of the courage it took to live each day. He began to die in actuality only two days after his “suicide attempt” (In fact, it had perhaps been his way of recognizing he would be turning down an irreversible path very soon, and only wanted to hasten the journey).

He had held out his hands, and was led exactly where he didn’t want to go. We had several earnest conversations; he had shared fears with me those last weeks, about the part of dying that causes everyone to tremble: the physical act of losing all control, of our bodies becoming unmanageable, of becoming burdensome to loved ones, or of being put aside when the care was too significant a burden. Ed had been a military man, in charge, in control, and shared how difficult it was to have others do for him; eventually unable to rise up, say no, or move his worn out body from his chair.

This reality, of no longer taking ourselves where we will, of becoming dependent, is what I see as the most dread part of the dying experience. I suspect this is also my own deep seated fear, as I am aware of how often I have heard someone say “I want it to be over”…this state of total vulnerability. It is what no manner of medication nor careful preparation will remedy; we will in fact NOT be in charge of the end, someone else will do this for us.

We talk a lot about choices at the end of life. But some things will not be within the realm of choice for us. It is why I want to listen carefully and advocate for others, as they travel down the road of disablement and dying, so that when the time comes, as much as possible, though none of us really want to go in that direction, (dying), we may be able have the specific room, the favorite chair, the company surrounding us, and the time appointed be as peaceful and fulfilling as possible.

The sun is shining, birds are soaring, the air smells of salt and sea and sweet grass, and Ed is no longer struggling with his heavy burden, or the way to go, or how to get there.
IT COULD BE THE LAST THING YOU EVER SAY

September 14th, 2015

I have been touched many times by someone’s last words. And sometimes, I am deeply saddened. At my final visit with my doctor-patient, his only tenuous words to me were the question, “What is my PT/INR?”, as he lay in his bed, wondering about his lab work, when the reality was his quickly deteriorating, dying body likely had every askew lab work known to man. Generally, one does not look jaundiced and shriveled by dehydration with periods of apnea and have normal lab values. I recognized his desire to still understand what was happening to him, now travelling the uncharted territory of his dying. As a physician, lab values had always determined part of his actions. He did not speak again to his family, as he spent the last two days of his life lying in bed with a few brief moments of clarity amid the approaching fog, for he was now dying in earnest. He had no spiritual beliefs, and had only stopped futile chemotherapy the week before signing on to hospice. I believe the physician part of him knew he was dying while at the same time he wondered if it could somehow be remedied.

I don’t think we get to plan our last words. By then, the planning part of our life seems to be overwhelmed with the out of control spinning that our bodies whirl into while dying. Perhaps my favorite words were spoken by a young mother who tried so hard to stay here and be able to finish the job of mothering her two young children. Her cancer marched ahead of all the chemotherapy and curative treatment possible, and finally overwhelmed her human body. She had written in her journal some comforting words for her family to read later, to know that whatever happened, “I will be okay”. Desperate to remain here, yet aware that she might in fact not have years and years left, she wrote those words a long while before she lay dying in her hospital bed in the living room, being turned and cared for by her family. One of the last times we positioned her on her side, she let out a soft moan, and I told her I was so sorry. Though no longer speaking and nearly nonresponsive, she suddenly whispered “I’m okay”. Two simple words that would in fact reassure us all how beautifully she came to terms with the end of her life… “I’m okay”.

I remember reading Steven Job’s final words from his sister’s eulogy, “Oh Wow, oh wow, oh wow.” Last words are often astounding, but not everyone is famous and written about as their not so remarkable lives come to a close. Some are published in books, or articles; some are simply remembered through the lives of those remaining: the gifts of last words.

Rather rich, famous, unknown, or unheard, these words seem to speak of the very thing that the rest of us need to know. If we can only hear these beautiful messages: Yes, you are okay now, and you are seeing scenes of wonder that we here left behind only have a glimpse of.
THE STORY TELLER

August 10th, 2015

I’ve been listening to and loving stories for most of my life. As the next to the youngest in a family of six children, there were always stories: about the years before I was born, and after I was born, and the grandparents, and their parents, and about how my mother met my father, and their early years. My father in addition to his law enforcement career was a writer, and my mother was a walking verbal history of our lives; many stories I have repeated to the next generation.

When I was 15 we moved from my birth state to Oregon. The singular thing I remember of the first three houses my family moved into was the proximity of the graveyard…not one of those fancy, well groomed places…more like a scene out of The Blair Witch Project, with overgrown dying vines, decrepit tombstones and dilapidated crypts. But for me, that was the charm of it! There was rarely a funeral happening there, and the most frequent visitors were the birds. I never felt like I was bothering anyone as I walked up the hill to sit on top of an ancient tomb, gazing out at the valley, and pondering life. (You, my reader, are wondering about my fascination with things dead, but in fact I considered more about life in that place.)

One of my imaginings was what happened to the lives whose vestiges were left there, in the place inhabited by the spirits of stories past…now names and sayings imprinted in granite that I could only conceptualize. I am sure I was not the only one who could hear the story behind the line of smallish stones, with a larger stone bearing the family name, and the few years or only months etched into eternity of the brief lives that ended, and I would see in my mind’s eye the strong woman whose children succumbed to some dreadful disease, all within weeks of each other, as they settled in the wilds of Oregon; Or the tombs, side by side, of a couple whose life together spanned nearly three quarters of a century; Or the man who was lost at sea; Or the captain who fought in the war. Oh, so many stories of other’s lives…and I wonder now, as my story has unfolded and many years have passed, will my story end there, too?

My mother’s gravestone is in that graveyard, with a few of my father’s ashes that joined her casket over a decade ago. I knew, as we lowered mom’s pine box into the earth, that many stories died with her, now buried in an old forgotten graveyard. This doesn’t seem morbid to me, it is the completed circle of their story together, that only they fully knew. My mother used to say she was “the last rose of summer”, the end of her own generation in her birth family and her husband’s family.

But I like to think I am the keeper of some of their stories. I think of the tribal village on another continent, and the person who is designated “the story keeper”. Sometimes I take care of the last person in a family lineage, and I am sad that the stories will no longer be kept, or told. It reminds me to listen more carefully.

And in a way, I realize this is why I write. The stories should be shared.
LISTEN. LOVE. BE.

July 20th, 2015

A question is asked, “What are the qualities or characteristics that I attribute to a successful leader in the nursing field in today’s ever-changing healthcare landscape?” * Well, some things are unchanging. Patients are still dying, and nurses are still providing care. Dame Cecily Saunders (image here), the founder of the modern day hospice movement, epitomized the essence of hospice nursing when she said, “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die”. This is not idealism, but what those of us who work in end of life care consider our mantra.

A career in nursing has taught me the importance of mentoring the next wave of nurses, for them to be leaders in the area of nursing that has defined our own nursing specialization. We bring much more than knowledge. Have we, those nurses who are considered experts, learned the most important lessons?

Lesson 1. Listen. I still remind myself, often, that I should listen more deeply. Do I hear the real concern that a patient is saying when he tells me, “I don’t need that yet”, refusing the hospital bed that he knows will be his final stand in the dying battle? Or what the spouse is expressing, as she tells me she doesn’t want to give the morphine to him, because she is worried about drug addiction? The answer is not, “We don’t worry about that”… the answer is to really hear her, and understand that she worries it will be the final dose, and she worries that she will walk into his room, and he won’t be breathing anymore, and she worries about what she will do when he is gone.

Lesson 2. Love. I used to keep a note on my desk, “Love what you do.” My advice, always, to someone considering nursing as a career path, is to have a passion for it. Only go this route if you are motivated internally to change the world, think big, and want to “help people”. Oh yes, patently idealistic and unrealistic, but please don’t just choose nursing as a profession from a list of things you could do… let it choose you. Plan to never extinguish the light that burns, that we call inspiration. This is what makes brilliant nurses. And you will need tremendous love and sincere caring, when a person is covered with vomit and the stench of their unwashed body makes you shudder, yet you know you can wash them and provide medication, and sincere compassion, and alleviate some of the suffering that is part of being human.

Lesson 3. Be. My patients have taught me the most important part of what I bring to them, with all my experience and expertise, is my presence. Who I am, at the bedside, is much more than my technical abilities and knowledge base, it is the essence of what makes me a hospice nurse. I am their midwife in this experience that is dying. I am able to come along side and bear witness as a life is ebbing, hopefully bringing solace to a patient and to their loved ones, during the most difficult time of life. Yes, I know some things about positioning a person who is now bedbound, and how to provide good skin care, and how to create a relaxing and peaceful environment, showing families how to speak quietly and lovingly when a person appears no longer responsive, and what medications are effective as their breathing becomes ragged or the nonverbal signs of pain are evident, or the angst of dying has created pain that no medication can cure.

I hope all the leaders in end of life care can mentor the newest nursing professionals, the next generation and future leaders, to listen to a person’s anguish, really hearing their story; provide a sense of love and acceptance to a patient and family, whoever they are; and be the presence needed in a patient’s journey of dying.

* http://onlinenursing.simmons.edu/national-nurses-week-voices-in-nursing-leadership
THE “H” WORD

June 23rd, 2015

Hospice is not the only “H” word I know. Hospital bed is the other offensive word. My sweet, amiable 80 year old patient lashed out at me, “I don’t want a hospital bed, don’t talk about it ever again” in a voice that sounded like Gollum when someone tried to take his “precious”. “Whoa, I said, “I promise not to mention it again”. Then she told me how she remembered the last days of her husband’s life, as he lay dying in their living room in his hospital bed. “Ah”, I thought, “Here is the real crux of the matter”.

We all hold mental images of what we believe to embody dying. Those dear ones that taught us how it is done may have imprinted a harsh view of the dying process, and not the gentle sigh and closing of eyes that we wish depicted all deaths. Pictures we recall that are never fully dismissed from our mind’s eye.

I listened to another patient who has expressed a perpetual anxiety about his breathing becoming ragged and suffocating, as his lung disease progresses. When I asked Dennis what he was most fearful about, he began to describe his father’s death, while he was still a very young man. His father had severe asthma, and he remembers him lying in an oxygen tent, struggling with every breath. He tells me his one regret is not getting some medicine to put in a handheld inhaler, describing it as a glass bulb filled with some yellow liquid, but the doctor had told them it didn’t do any good. His father begged his mother to get more medicine, and when she said no, he begged his sister, and when she said no, he turned to Dennis, and begged him to get the medicine. And Dennis remembers saying to his father, “The doctor said it didn’t do any good, Dad, and I can’t get it for you.” All these years later, and his great regret is not advocating for his father, and getting the medicine, even if it was only “To make him feel better because he believed it would.”

And I recall all the stories I have heard over the years, what we wish we could do over, how the last days of some loved one’s life left us marked for all our own life. Sometimes when I hear these stories, I recognize a teaching moment, and try to encourage a person as they begin their own journey down the path of disability and dying, that the thing feared can be treated, or managed, perhaps even conquered. Other times I am deeply aware of our experiences that mar our way and have become a part of who we are, and it is not my place to convince, cajole, or insist.

I am an advocate. Persuading someone to do something they don’t want, this is not my job. But to plead for someone’s cause and speak out for them, this is my job. If you don’t want the hospital bed, by golly, I won’t mention it again.
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.
Guest blog: “Death Cafe”–Not Exactly a Last Supper

May 31st, 2015

Thank you to Karen, for sharing her blog. I, too, have been fascinated with the concept of death cafes and enjoyed reading Karen’s story:

Before I knew what a “death cafe” referred to, I pictured a collection of skulls clacking away as they helped themselves to a buffet, with soft foods and liquids being the most favored by far. “Death cafe?” How could food and death be juxtapositioned? One of the leading graphics in an article that unveiled the meaning of this phrase showed elegant blue and white dishware obediently standing in a holder. A skull took up the center of each plate, hogging all the blue, leaving the white to fill in the periphery. Written on the rim was, “Bone appetit.” See that? I’m not the only one who thinks like I do.

“Death cafes” are part of a movement to break cultural taboos against openly discussing such topics as how we want to be remembered, how to bring up the subject of dying with loved ones and how we want our funerals to be conducted. The food part, making this subject a bit easier to swallow, usually consists of beverages and snacks.The very first death cafes began in 2004 and really took off in 2011. The organizers say that by now approximately one thousand people have attended them in countries such as England, Australia, the United States, and Italy.

Karen Kaplan is a rabbi, hospice chaplain, author and college instructor. She blogs at https://offbeatcompassion.wordpress.com

My husband Steve and I, both of us curiosity seekers, went to a death cafe in someone’s home the middle of this month. We helped ourselves to some snacks–the best one was guava paste and cheese spread on crackers–and waited our turn to answer the question of why we were there. Many people said they were open to discussing it because they had lost a loved one at a tender age, or they themselves were young when someone very close to them had died. My answer was that I wanted to see what people were saying about this topic and that I thought I might get ideas for my blog posts. (See?)

We then had to complete the phrase, “Death is……” Naturally I said, “Death is at the edge.” I say naturally because my working book title is “Encountering the Edge: A Hospice Chaplain’s Memoir.” Later when we broke into smaller groups, I said that when I contemplate this edge, it throws life, which is on the other side of that edge, into sharper relief.

I figured that I would have to forgo retrieving any humorous gems from this particular event, but luckily someone said, “Oh, I thought this event was called a “Death Cave.” “Death Cave?” Is that where thoughts on death end up after we chew the fat? When Steve and I laughed about that on the way home, he said “that sounds like the Flintstones were going to host the event.” It’s about time. I never have ever heard Fred and Wilma address the issue, have you?

Karen has since published her book, entitled “Encountering The Edge: What People Told Me Before They Died” (Pen-L Publishing, 2014, available wherever books are sold.) http://pen-l.com/EncounteringTheEdge.html
Why I Love Clara Barton (Angel of the Battlefield) and my Grandmother!

May 22nd, 2015

I was never a war nurse.

Clara Barton died over a hundred years ago.

But I love the woman.

I have loved her for many years.

I was deeply influenced by my grandmother. She taught me how to love, actually how to love deeply under times of sadness, bad news, and death. Some of these lessons were learned while being a field hospital nurse in 1918 in France in WWI during the Meuse-Argonne Offensive, the costliest military campaign in United States military history, involving 1.2 million American soldiers, 26,277 killed and 95,786 wounded.

She volunteered for this duty, “because it was the right thing to do.” She was decorated for heroism. A few years ago I traveled to the battlefields where she worked as a nurse. I stood in an American military graveyard in France, surrounded by some of “her boys” who didn’t survive. I wept.

Clara Barton was one of America’s greatest nurses, feeling that it was her duty to help the soldiers on the front line during the American Civil War. She mounted Herculean efforts to raise funds and gather supplies to bring medical services to soldiers, and then worked to distribute supplies, clean hospitals, apply dressings, and serve food to them. From 1862 she worked on the front lines, once having a bullet travel through the sleeve of her dress killing the man she was caring for. She bore the name “Angel of the battlefield” as a tribute to her steadfast service.

After the war she ran the Office of Missing Soldiers, and also brought her war nursing knowledge to several countries overseas. She was decorated for her efforts and consulted with two US Presidents, helping form and then become the first president of the International Committee of the Red Cross. The Red Cross quickly expanded its scope to refugees and natural disaster under her leadership.

I am just a hospice nurse who keeps a diary. I record the stories of some amazing true life heroes, their families, and caregivers in their final days. Their stories may provide us a blueprint, since they (the only true experts on death) are gone.

They say it takes all kinds to make a world, but I can’t help thinking what a much better world it would be if there were more heroines like Clara Barton and my grandmother.
SPEECHLESS

April 29th, 2015

I don’t know if I am an advocate of “therapeutic touch” in the contemporary sense (many studies contradict each other regarding the efficacy). I’m not sure people must be trained in a technique that brings solace; nor do I think it is too mystical or inexplicable. But I am a believer in humanity.

I believe we as humans can share compassion, in a glance, in a touch.

I am a believer in touch and presence as a healing balm to the dying, in a practical sense, since this has been my experience time and again, at the bedside vigil. I have actually seen the turmoil and angst in a dying face suddenly disappear, with the gentle kiss of a spouse, or the simple holding of a dying person’s hand.

Vera is my patient whose hearing aids no longer serve to enhance anything; she cannot hear me, without literally screaming into her ear. Her eyesight was poor already, but perhaps now she can no longer read my lips or even see my expressions, as her tired eyes are glazed over and mostly closed.

She probably has mere hours, at the most a couple of days left, in this womb-like state, to have things done “to her” by her well-meaning caregivers, who need to clean her, turn her, and give her medicine.

But her eyes flutter open briefly; I see a hint of recognition for the hospice nurse who has had those loud conversations many times in the past weeks. (We have had miscommunications and what almost seemed like shouting matches in order to address her needs, with many written notes back and forth.) I think of past confidences I have made, and the long sometimes whispered conversations I have had with other patients, who have told me of their fears and worries as they faced their dying.

This isn’t to be with Vera.

Now, after completing the necessary “nursey” things, as I touch her cheek and hold her hand, I see a calm settle on her face. I don’t know if I can describe this as “therapeutic touch” but I have a great need to comfort her, in her silent world, and to let her know I am wishing her well on her journey.

I try to emanate this as I sit quietly next to her. I feel a slight pressure in her hand that lies in mine…I think she got my message.