Drawing to a Close

We drank champagne at work today. The masses clamored for the office to shut down early and our boss relented, even though he was planning to let us all go early anyway, just like he did last Friday, the day before Christmas Eve. The corks popped, we drank a toast, and the lights were turned off, leaving the last twelve months of love and labor behind us.

The turning of the year often naturally predisposes one to reflection and review. More than eighty people have been under my care this year, several dying quite peaceful deaths while surrounded by loving family and friends. The year also saw relapses and remissions of addiction, domestic violence, divorce, recovery from alcoholism, resurgence of cancer, improved health, and continued chronic physical and psychiatric illnesses. With so many patients, I can't say that everyone is better or worse---there is a continuum of recovery and rehabilitation, and they all find a different place along its trajectory, that place often changing from day to day.

Professionally, it's been a year of proving my mettle (to no one other than myself) and holding my own, often putting in more hours than I might like in a given week. More and more, the management of information has become part and parcel of my job, something they never really mentioned in nursing school. Still, I feel good about what I've been able to accomplish, the care I've given, the lives I've been able to touch, the students I've guided and laughed with.

Reflecting further, I also recognize certain skills and areas of assessment that I would like to develop: neurological assessment; cardiac assessment; further improvement of my Spanish, especially in relation to psychosocial counseling

I could go on, but it's just too uninteresting.

On the other work-front, I now have a three-week break from teaching---also known as stuffing the minds of nascent nurses with too many facts and potential scenarios. One more semester, and I plan to retire from my stint as college professor, glad to have learned that I can do it, and glad (in some ways) to leave it behind me.

Anyway, life at work evolves and shifts, but also remains quite constant. The basic calculations are the same, the cast changes from time to time, but the underlying feeling is continuous, and these three-day weekends? They're priceless. What is one golden lesson learned? Self-care is paramount. A sick and depressed caregiver is no use to anyone in this world.

Here's to another year of satisfying work, and continued gratitude for the luxury and blessing of having such work to fulfill myself and my place in the scheme of human endeavor.

Blogstipation

noun. To be unable to think of anything to blog about, i.e. writer's block for bloggers.

---as found on Samizdata.net

Paradox

I use this quote by Mother Teresa as the "signature" on my email account...

"I have found the paradox that if I love until it hurts, there is no hurt, only more love."

What more can I say on the eve of Christmas Eve?

O! Merciful Monday!

The week begins, not with a roar, but with a relative hum. While some of the usual suspects surfaced as expected, the intensity of said surfacing was subdued. Is it the coming of the holiday season? I would think not---things usually heat up about now. Let's just say it was a day in which there was room to breathe and think clearly. Any day like that is worth exulting over.

That said, the usual holiday and winter-time mood shifts are also making themselves known. Financial stressors, winter's tightening grip, and the shortening days all take their toll, but the coming Solstice actually signals the beginning of the (slow but steady) return of the light, the sun going down 30-60 seconds later each day after December 21st, taking us all the way to the heady days of late June's summer cauldron. But I digress in thinking of the more verdant times ahead....

Today I did what any prudent Nurse Care Manager would do: a patient has difficulty waking up early enough to shuffle her school-age children off to school, so I bought her an alarm-clock in the guise of a Christmas present. It was accompanied by toys for the kids as well, and I explained that the clock is actually a gift for the kids, although they would much rather oversleep and miss as much school as possible. Hopefully, my gift will pay dividends in improved educational outcomes and life opportunities for these young ones. You just can't care for the parent if you don't notice (and try to improve) the plight of the kids. Nursing is so much more than blood pressures.....

I was able to give good holiday news to another patient today. She went off of her AIDS medications (unbeknownst to me) for various psychosocial reasons about six weeks ago, and I was afraid that her virus would bounce back and mutate with ferocity in the face of such an opportunity. Luckily for her, the bloodwork came back unscathed and we will restart meds right away. A lovely Christmas gift of continued good health.

The day was capped off by administering a 100-question final exam to my beleaguered students. From the looks of things, people did fairly well. I consciously made the exam only modestly difficult, a welcome reprieve for them at the end of a long semester.

This entry is simply "a day in the life". Nothing profound, nothing earth-shattering. Just the fatigued chattering of a tired Monday-night nurse.

Buenas noches.

Ghost in a Machine

Previous post details system error.

Progress report:

Nurse 9.0 reboot relatively successful.

No hardware malfunction found, except for chronic low-back pain and sundry medical problems (ie: gastroesophageal reflux disease, hyperlipidemia, and enlarged prostate).

Software occasionally malfunctions secondary to pharmaceutically-corrected clinical depression.

Nurse's "better half" is source of continued solace and joy, as is offspring.

Canine companions: ditto, although ageing rapidly.

If nurse is really a "ghost in a machine", care of said machine is paramount.

Off to bed.

System Error

+Warning: healthcare provider system error/
+Nurse 9.0 program malfunction.
+Available memory at 98% capacity.
+Hard drive malfunction.
+Input overload.
+Processor speed at full capacity.
+Suggest re-boot system, replace hardware, or call manufacturer.

Thanks, I Needed That

Sometimes positive feedback can lift one's spirits and renew one's commitment. While pondering what to write about today, I considered several comments which came my way in the last few days and went straight to my heart.

At my workplace recently, there was a "consumer meeting" in which some of our patients voluntarily came to a group meeting to give their honest feedback about our program and what it means to them. My supervisor described how one of my patients---a gentleman with paraplegia from a gun-shot wound to the spine---emotionally exclaimed how this is the first time that he feels like a human being in terms of his healthcare. He said how amazing and strange it is to have a nurse who actually calls him on the phone from time to time to offer assistance and make periodic home visits. He said, "You have no idea how that feels." My supervisor admitted that, listening to this testimonial, tears came to his eyes.

Just today, I struggled to make it to work in a snowstorm only to receive a cell-phone call just before arriving that I was welcome to work from home and not risk coming out in the storm. Somewhat disappointed that I had missed an opportunity for a snow-day, I was rewarded in my efforts by being able to assist a patient in obtaining an urgent ultrasound and an urgent visit with one of our doctors. While she may have been able to make it to one of those appointments today without my help, she certainly would not have achieved both. Leaving work early, I was even able to drive her home, stopping at her pharmacy along the way to pick up her medications which she admitted would not have happened due to her disability, the snowstorm, and not having a car. Her gratitude was overwhelming, especially when she said, "No one cares like you do."

A student in my class to whom I have given some extra support and compassion said some embarrassingly laudatory things (thankfully privately) about me last night as she packed up her things at the end of class, and I found myself truly grateful for being "seen" by her, even though the support I have offered did not seem worthy of such unbridled praise.

While I may sometimes forget how the little things that I do for others can be very meaningful for the recipients---even when what I do seems so relatively minor---I also remind myself how the feedback which I receive from those whom I serve can only strengthen my resolve that my work is worthwhile and tangibly effective. For every patient who is unable or unwilling to show appreciation for what they are receiving, there are ten whose gratitude is like a balm, a reinforcement that helps me to continually recommit to my work. Feeling that how one earns one's living has value for others is priceless in its abililty to sustain one in moments of stress and overwork.

We were reminded by my boss just yesterday that our agency---and the specialized care which it provides---is being watched by many in the healthcare delivery industry around the country. The results of our work has been published in professional healthcare management journals,
studied by The Robert Wood Johnson Foundation and by the Boston University School of Public Health. My commitment stems from the fact that what we are doing may eventually serve as a blueprint for delivering compassionate and quality care to disabled and underserved communities of patients around the country. An opportunity to possibly be part of healthcare history is a driving force behind our collective passion for our work.

On this snowy evening, I can feel good about the energy I put out into the world, despite the headaches, frustration, and overwhelmed feelings which abound. These small doses of positive feedback will go a long way toward refreshing me in my continued pursuit of finding meaning in daily life.

I really did need that.

No Rest for the Weary?

Is there no break from cancer around here? Just as I hoped that all of my patients and their famlies were enjoying a uneventful holiday weekend, I come to work to learn that one of my favorites---a middle-aged man with inoperable throat cancer---was in ICU over the weekend after "bleeding out". Tumors actually grow their own veins and arteries, damn them, and some of those blood vessels can be rather friable (fragile). My patient developed severe hemoptysis (spitting up blood) and was rushed to the ER. He's now out of ICU and out of the woods---temporarily---but the spectre of further bleeds looms large, as does the fact that the inoperable tumor is beyond the practical benefit of further chemo or radiation. With a tracheostomy for breathing and a gastric tube for receiving nutrition, medications and liquids, the notions of quality of life, pain control, and the ability to remain comfortably at home come to the fore.

I just lost a beloved patient to cancer not three months after my other sweet guy succumed to it as well. Now patient #3 is showing signs of decline, all when the week of the fourth anniversary of my best friend's murder is upon us, the actual anniversary being this Friday, December 2nd.

Ah me, oh my: death, illness and Winter sure can pack a triple whammy. All of this, however, is assuaged by the warmth of home, the love of family and friends, the dawning of the Solstice in just over three weeks, and the turning of the year, as arbitary as that may seem. Bono may have once sang, "Nothing changes on New Year's Day", but everything can change if one views it through the proper lens. My friend was murdered---but we've grown, he's moved on, and we're the stronger for it. So my patients die---we all must follow suit, and it's a priviledge to see them through the process. So the Winter is long---Spring and Summer are just that much sweeter for it.

Is there rest for the weary? If they seek it, it's in the very breath they take.

Transissues

A friend of ours divulged to us the other night that he is undergoing a transformation from living as a biological man to living as a woman by choice. He is assuming a female name, dressing as a woman, and embracing a feminine identity that he has felt near and dear to his heart since he was very young. This incredible conversation sparked my desire to write about my work with transgendered clients, something I have yet to address here on DD.

My friend's private journey aside, I have had the pleasure to have a number of transgendered patients over the years and it's developed into one of my keen professional interests. Having always considered myself a gay/lesbian/bisexual ally, my close work with the transgendered has led me to embrace the role as transgender ally as well. In my current job, I have had one patient who was a female-to-male (FTM) transgendered individual, and I currently have two MTF patients with whom I am very close. Their experiences inform my current (limited) knowledge base.

Last November, at a conference of the Association of Nurses in AIDS Care (ANAC), my eyes were opened wider than ever by Sam Lurie, the speaker who delivered the Plenary Address on Transgendered Health Care. Sam's approach to trans healthcare entertains, educates, and advocates on a variety of levels, and since that conference my interest has been duly piqued.

When thinking about this issue, the average person makes assumptions, remembers the "trans-sexual" label which seemed to be so popular in the 70's, and images of trans stereotypes may cometo mind. I have vague memories of a famous football player who underwent gender reassignment surgery when I was a kid, and somehow that image became confused with another memory: Joe Namath, another football star, doing a commercial for men's panty hose. But I digress.

Thanks in large part, I think, to the success and political acumen of the women's rights, civil rights, gay rights, and AIDS rights movements, the transgendered community has gained political power, entered the mainstream consciousness, joined forces with the Gay, Lesbian, and Bisexual communities, and forced society to gaze deeply at its definitions of gender. Now for some, this may be such a stretch as to snap the cognitive rubber-band, figuratively speaking, when taken in context with the current culture wars over the definition of marriage. But be that as it may, issues of gender and gender identity are and will continue to be part of the cultural zeitgeist and call for our (divided or undivided) attention.

That said, from the point of view of a healthcare provider who wants to be "trans-friendly", the germaine issues are many. First of all, one must become familiar with the nomenclature of the trans community in all its form and derivations: FTM, MTF, trans-man, trans-woman, op, non-op, and the list goes on, many terms being used within the trans community itself which I would not use in my own conversations. (This is similar to how the African-American and gay communities have re-adopted terms that were previously used as derogatory in the wider culture, breathing new life into those terms for the purpose of empowerment and self-definition.)
The health issues which a transgendered person faces are many. Contrary to popular opinion, there are many people who define themselves as trans who have not had---and will never have--- gender reassignment surgery. Perhaps there are economic barriers to such a radical transition, or perhaps the person is comfortable with their biological genitalia and simply prefers to "present" as the other gender. This is sometimes referred, as I have learned, to being "Op" or "Non-Op", and I have also seen the term "Pre-Op", meaning someone who is preparing for surgery, although that preparation may last a lifetime and never actually occur.

Surgery aside, many FTMs and MTFs will choose to undergo hormone therapy, a course which will cause physical, physiological, and even emotional changes for the individual. If a man takes "feminizing hormones", he will grow less facial and body hair, develop a softer voice, softer curves, and lose muscle tone, gaining fat in the hips and more of the familiar "hour-glass" shape of a female body. A woman taking testosterone will find her voice deepening, facial hair growing in, and muscular growth occuring. Both of these groups will find, aside from physical changes, documented alterations in thinking and communicating styles, lending credence to the theory that gender is widely dictated by hormone levels which can be altered and adjusted based on the way in which the individual wishes to present to the world and and be perceived by the world.

Hormone therapy presents challenges to the healthcare provider, both in its execution and monitoring. While there are protocols for such therapy available to the curious and conscientious provider, many doctors might feel uncomfortable with such "off-label" usage and decline to be involved. Not covered by any insurance, cost and availability become factors, and the quality of hormones obtained through the black market could be questionable, as well. Off-label or not, patients need expert guidance, compassionate care, professional oversight, and an unbiased advocate.

Picture this: you are a woman who has always felt that your true identity was male despite the genitalia with which you were born. You decide as a young adult to undergo hormone replacement therapy, knowing that it is most powerful and effective before a person is in their twenties. You grow facial hair, hair on your legs, arms and chest, your muscles develop, your voice deepens, and you are able to go out in the world and "pass" as a man.

There are several complicating factors in our scenario, however. Perhaps you would like gender reassignment surgery but it is an economic impossibility for you, or perhaps it is not even a question and you're happy with your current body vis-a-vis hormone replacement. Being biologically female, you must undergo a pelvic exam and PAP smear every year, an exercise which tests all of your abilities to advocate for yourself and educate others about your healthcare needs. When you enter the health center, you are seen as a man and there is no doubt as to your gender. However, when you get to the front desk, you need to communicate to the receptionist that you are there to see the gynecologist. How does she or he react? Do they ask why, as a man, you need to see the gyn? Do they verbally abuse you for being a freak? Do they "out" you in front of the other patients standing in line? When they realize you are trans, do they loudly ask, "SO, DID YOU HAVE 'THE OPERATION' YET?" (This would be akin to me walking up to a patient in the waiting room and asking if I could see their genitals!) How many of these trials and tribulations will you endure for the sake of your health? How will you decide which rest room to use? How many dirty looks can you entertain? How much of this stress is worth it?

Once you make it into the exam room, the next challenge is the medical assistant. Will you need to explain again that, yes, you look like a man, but yes, you have a vagina and need a PAP smear? Will you overhear the medical assistant giggling with her colleagues in the nurses' station? How will the gynecologist react when she walks in the room? Will she be understanding? Repulsed? Judgemental? Refuse to examine you? Maybe this will be your last pelvic exam for the next ten or fifteen years. Avoidance of such traumatic experiences might be understandable, but could have grave and perhaps fatal consequences.

As you can see, most of us would never even consider such scenarios, let alone think about how to assuage fears and change insitutional policies which discriminate against the transgendered community. As a healthcare provider in a world of fixed gender definitions and rigidly held beliefs and stereotypes, advocating for patients on this level can be an uphill battle on the institutional and cultural level. But having seen the pain and confusion which such experiences can cause, I am on the side of advocating, fighting, and pushing for equality and healthcare parity for a population whose needs are many, and who are, whether our culture accepts it or not, here to stay.

A Call, A Death, A Final Goodbye

The call just came at 5pm. Mary answered my cell-phone and received the news: "A" stopped breathing just moments ago. The hospice nurse is on her way to pronounce her dead ,and the family is gathered around her diminutive body which has ceased its earthly rhythms.

A votive candle is now lit in the lap of the Buddha statue on our dining room altar. In some cultures, candles are lit for the newly dead to light their way through the confusion of the first hours of death. It is said in the Tibetan Book of the Dead that the "Bardo" stage---the stage of transition following death---can be shocking and confusing for the unprepared soul, and there are specific meditations that can be practiced to usher a soul through the Bardo towards enlightenment.

"The Tibetan Book of the Dead (also called The Bardo Thotrol) from Tibetan Buddhism was traditionally read aloud to the dying to help them attain liberation. It guides a person to use the moment of death to recognize the nature of mind and attain liberation.

"It teaches that awareness, once freed from the body, creates its own reality like that of a dream. This dream projection unfolds in predictable ways both frightening and beautiful. Peaceful and wrathful visions appear, and these visions can be overwhelming. Since the awareness is still in shock of no longer being attached to and shielded by a body, it needs guidance and forewarning so that key decisions that lead to enlightenment are made. The Tibetan Book of the Dead teaches how one can attain heavenly realms by recognizing the enlightened realms as opposed to being drawn into the realms of seduction that pull incorporeal awareness into cyclic suffering."

I loved “A” more than any patient that I can remember. I can’t quite put my finger on why that is. Maybe it was all of the cigarette-smoke-laden plantains that she gifted to me over the years in her inimitable way. Maybe it was the way she would react with genuine surprised delight when I would arrive at her home, even if we had just hours earlier agreed upon a time for my visit. Maybe it was how, even in her most sickly state, she would inquire after my son and wife and dogs, sending her blessings to them and all of my extended family. I realize that this past Friday was the only time she had not asked that ubiquitous question, her mind being too disengaged from her body to make such an effort, although I’m sure that the intention existed in her mind, even if the words were unsaid.

It's funny how I never tired of her questions, her inability to grasp some of the things I tried to teach her, her reluctance to make changes that we felt were necessary for her health. She was apparently knowingly infected with HIV by a man whom she had met during her fifth decade of life, but she embraced and rallied around that diagnosis with determination, and her steadfast adherence to the medications kept her virus completely at bay for many years, even at the time of her death. Was the cancer that grew in her chest related to HIV even though she had no detectable virus in her blood? Perhaps, but the data is still not there for us to draw any firm conclusions. Whatever the case may be, she smoked like a chimney and only stopped when 24-hour oxygen was absolutely required to sustain her.

Over the last five years, I would often use "A" as an example of the complicated nature of my patients: HIV, diabetes, hypthyroidism, anxiety disorder, major depression, psychosis, history of suicide attempts. But I would also use her as an example of the closeness and personal satisfaction that I gleaned from my work, emotional depth created in such bonds of professional therapeutic relationship and, yes, friendship. Granted, the friendship in its active form was somewhat conditional based upon a one-way relationship of my visits and attentions to her health, but the true spiritual friendship and bond was one born of a kinship that neither of us ever defined and only recently verbalized. Just a few weeks ago, while visiting her in the nursing home, A and I agreed that perhaps we had known one another in a past life, and that there was no way to fully understand why we felt so closely connected. She was quite lucid at the time of that visit, somewhat sad and thoughtful, but readily agreed that our kinship was special to her.

A was a gem, and I will miss her dearly. There was something magical about her that touched me deeply. I am blessed to have known her, and I send her my love and blessings as she leaves this earth, leaves her body, and leaves her family to carry on in her memory. Goodbye, dear friend.

Goodbye?

I left work early, determined to visit my dying patient and check in before the weekend. Being Friday evening, the traffic was snarly, but I braved the morass and made it there safely.

Asleep in bed, "A." was curled in the fetal position, turned towards the wall, the hum of the pneumatic mattress and oxygen tank providing ambient white noise. Her daughter sat with me on the adjacent bed and we talked of A's life, her history, their relationship, family. She showed me some photo albums and I beheld images of A's more distant past which had been mostly a mystery to me. I always know that a larger life and history exists behind and within every patient: childhood, adolescence, family, travel, work and career---but those stories do not always enter into the ongoing conversation, frequently lost in the shuffle of health problems and medical care. Nonetheless, these details always help to flesh out one's portrait of the individual and are infinitely enlightening.

After some time, "A" awoke, and it seemed to take her a few minutes to register who I was. The change from three days ago was striking. She seemed wasted, thin ("cachectic" in medical terminology), and disoriented. She sat on the edge of the bed with our help, and made efforts to stand, which she did with my assistance. When I inquired where she wanted to go, she had nothing to say, so I invited her to dance, and we stood there, almost motionless, my arms around her, her right hand hooked in my belt, her left hand holding my right hand. Her daughter stood by, saying "Baile, mama!", "Dance, momma!". The excitement over, we sat on the big bed which sits just adjacent to the hospital bed, and "A" leaned against me as I held her upright, my arm around her thin shoulders. I said "I love you" in Spanish, and then in heavily accented English (the way she would say it, the "v" in love more like two "F's", sounding more like "luff"). She said "I luff you too" in her gutteral and congested voice which now emanates from her tightened throat. It was a poignant moment, and then the energy began to shift as I prepared to leave for home.

A's daughter asked me about A's fluid intake, and I advised her to keep it as minimal as possible in order to keep her lungs from filling up with fluid. I explained how A's kidneys are shutting down, producing little, if any, urine, and her daughter confirmed that A's urine output in the last 24 hours had been scant, and quite concentrated, a sure sign that her bodily processes are waning. I suggested popsicles as a nice treat and source of fluid and fructose, and told her how she can make her own or buy some at the store. The weight of A's small frame was pressed against my side.

Taking my leave once again, I said goodbye, again not knowing if this was the final goodbye, or just another moment of letting go, preparing for the real thing. When A's daughter had been out of the room, I had told A that she was free to go when she felt the time was right, that there was nothing to fear, that she was loved and cared for, and that her family would be OK after her departure. I remembered the last time I had told a patient that several months ago, and he had died within thirty minutes. I think A may last through the weekend, but I wanted her to know that she could consider leaving her body when she felt it was apropriate and right, and I know that my word holds great sway for her. Her vacant stare could not convey the deeper comprehension that I know she was experiencing in that moment.

These goodbyes are not just that---they are also hellos to the next incarnation, the next permutation. We practice and practice all our lives, letting go of possessions, people, places, experiences, ideas, concepts, delusions, desires. "A" is about to let go of the greatest anchor to the physical world---her 69-year-old body---and she can do so with peace and equanimity. I wish her well these next few days as she continues her process of release, and if I do not see her again in this life, I can bless her on her journey with a clear conscience and knowledge that our souls shared a connection that is greater than the sum of our physical selves. Those connections are eternal and incorporeal, yet no less real than the shaking of hands, the warmth of fleshly contact. There is nothing more satisfying than true connection with another. Blessings on you, A, as this physical journey draws to its natural close. To paraphrase Elizabeth Kubler-Ross, we live until we say goodbye.

A Sweet Visit

I finally made a visit to my dying patient's home, or rather her daughter's home. I say that she's dying, but aren't we all? There she was, laying on her side in a hospital bed with a special pneumatically-controlled mattress provided by the hospice nurses. These beds are now de rigeur when patients are bed-bound and dying at home---pressure points and needless skin ulcers are avoided. A very valuable tool that most people in the world lack as they lay on their death-bed. What relative luxury.

Now that she's home and really only on "comfort measures", she receives morphine gel by mouth as needed, Ativan and Haldol liquid for anxiety and agitation, oxygen around the clock, and other "as needed" meds for nausea and other symptoms. Due to the large mass in her chest, she is limited to very soft foods and small amounts of liquids. It's said that a human can live a month without food, but only a week without water. At her current intake, she is able to just sustain herself, so no one knows how long this process might last. If the cancer is not advancing, she could remain in this state for some time, though the risk of infection and other complications is always high.

With "comfort measures only", she is no longer taking her HIV meds, diabetes meds, thyroid hormone, etcetera. She is now on a bare-bones regimen geared towards comfort and freedom from pain and psychic distress. This is often very difficult for the unitiated to understand, but it is quite standard practice in these sorts of situations. Additionally, as someone's body begins to shut down and they remain more and more confined to bed, drinking excessive amounts of fluids can only serve to cause fluid accumulation in the lungs, leading to pneumonia, congestive heart failure, or at least the feeling of drowing in one's own fluids. Not pleasant, but also a difficult concept for many families of the dying to grasp and accept. It seems cruel to limit fluid intake, but it is enormously helpful to the lungs and kidneys as they begin their deneoument.

I sat with this woman for about thirty minutes. As always, she asked about my wife, son, and dogs, and looked very deeply into my eyes. Her pupils seemed enormous, and her eyes themselves appeared equally huge---dark pools of feeling and life. I could not get over her eyes and told her how large and profound they seemed.

When asked if she believes in reincarnation, she replied "yes" quite quickly. I inquired about what other lives she has led, and she said that she had been an animal that lived "in the mountains". Pressed for more details, she could not elucidate other than to say that she has been many different animals in her time and that this life is her first as a human. She did, however, state clearly that she and I had met before, but I forgot to ask in what form I had made her acquaintance.

As is frequently the case when I visit her over the last few months---whether in the hospital or at home---we spent a fair amount of time looking into each other's eyes, both with and without a smile as we did so. I encouraged her to close her eyes, and stroked her face and head as she rested on her arm, the small stuffed moose which I gave her in the nursing home cradled in the crook of her neck. In her broken English, she looked at the moose and said, "I love you, cookie", hugging its plush softness to her face.

Sitting in silence at the side of the bed, I wondered to myself what might be going on in her mind at this time, no anti-psychotics to control her long-standing mental illness and anxieties. That said, when asked about her fears and concerns, she readily replied that she had no fears and no concerns, and felt no fear of neither death nor suffering. She seemed at her most peaceful---more so than at any other time in our five-year acquaintance.

I took my leave reluctantly, needing to head back to the clinic. Since I am no longer her medical provider, I can come and go as a friend, assured that the hospice nurses are providing the best care and comfort to my beloved friend. I know the day of her departure is not far off, and feel fairly clear that it will happen before the year turns its unavoidable corner.

Death can be soft, clear, almost effortless, and this is truly my wish for my friend. May death visit her with the gentlest of caresses, and whisk her away in a rush of flower-scented breath. This is my request tonight. May it be granted. May she pass with ease. May her passage be one of joyful release and return to the source. May she return to whence she came, and know that she graced my heart as she passed through this harsh, troubled, and painfully beautiful world.

Occupational Hazards

Identifying as a caregiver in this world is a sword with at least two edges. Being a caregiver---"giving care" as part of one's daily work in the world---is in many minds a noble cause and profession. This may be true to some extent, yet it brings with it many hidden occupational hazards. As I have discussed before, "compassion fatigue" is always around the corner, along with many of the other so-called "negative" emotions. Direct care of other human beings is a tiring occupation yet offers numerous rewards of spiritual, if not monetary, value.

Teaching brings its own rewards, as I have discovered. Having been offered a position as a full-time teacher/program coordinator, the pull of education has had some influence in my world, yet my hesitation to enter that sphere full-time is quite strong. Being dedicated to caregiving, I understand that I would need to continue to work in a direct care setting even if I accepted a position as a teacher. How else can a nursing professor teach the art and science of nursing if not him- or herself still immersed in the world of patient care? So that career choice would still necessitate having multiple jobs and multiple professional roles. I was also just offered a position as a nursing supervisor/manager for a local office of a corporate nationwide visiting nurse agency. As a man in a predominantly female field, I would then join the ranks of men who have risen from the ranks of caregivers into that of management, adding to the perception that men rise more easily to management positions in nursing in large part due to their gender. True or not, this is a prevalent dynamic in the field and one which I am hesitant to become a statistical member of.

For all of its flaws and shortcomings, I still feel an emotional and professional allegiance to my current full-time position, providing care in a cutting-edge nurse-run organization which may eventually serve as a model of delivering medical care to underserved chronically ill populations around the country. Taking into consideration the stress, the tension, the huge caseload, the frustrations, it still feels like home, for now at least.

And teaching new nurses? Does it still hold my attention? Yes, yet the cognitive dissonance comes in the knowledge that continuing to work forty-plus hours each week in a full-time job on top of a committment to teaching a four hour class one night each week is wearing me down. The amount of my leisure time hours spent in preparation for teaching eats away at my overall peace of mind, a consistent feeling of having "more to do" hanging in the air of my home. As much as the act of teaching is enjoyable and satisfying, doing so in the context of so much other hard work is a definite source of stress and unrest. I am currently quite clear that I will finish out the academic year at the school, seeing my current group of 23 students through to graduation, and cease my teaching activities, simplifying my life both at work and at home. If one's health and happiness begins to suffer from one's professional choices in life, one must make changes that will ease the tension and dissonance that such choices can bring.

I realize that this missive is quite self-indulgent and introspective, but remind myself that it is "blogger's license" at its self-centered best. Where else can one ruminate in an unedited fashion on the vicissitudes of one's life and career? If you made it through this rather banal piece of writing, thanks for your indulgence.

Sustenance

Another nursing home visit to my former patient today, a cuddly stuffed moose in hand as a gift of comfort. She is sliding down that slippery slope of rapid deterioration and escalating illness, further driving home the fact that her family could no longer handle her care at home.

While I perched on the edge of her bed, she informed me that the doctors will be putting a tube into her stomach through a hole in her abdomen through which she can receive fluids, medications and food, now that the mass in her chest precludes almost all swallowing. I explained the procedure and how this "g-tube" will work. We talked about her fears, joked a little, and she of course asked about my wife, son, and dogs. She was so happy to hear that my son is visiting us this weekend, as if she herself would be the recipient of that visit.

The love between us and our mutual admiration and appreciation was palpable to me today. This 70-year-old woman and I share a soul connection that reaches beyond the clinical into a place of utter humanity and connectedness. There is that place where souls meet and other boundaries melt away, and although it can be rare in a provider-patient relationship, the realization that one has even briefly touched that potential is enough to overwhelm one's heart with an incomparable feast of emotional sustenance.

One Love

Since my attempts to visit my (now former) patient at the nursing home were scuttled every day by the vicissitudes of my work-life, I simply went there today after work. I'm often exhausted on Fridays at 5, but seeing her before the weekend felt like an absolute necessity. Over the last few days, the tearful calls from my patient's daughter have been numerous, a great deal of my already busy days interrupted by panicked calls. Learning that she is now considered a hospice patient increased my need to pay a visit.

The nursing home visit was enough to reestablish our heart connection. I entered the room to find daughter, grandson, grandson's wife, and one-month-old great-granddaughter visiting my significantly skinnier patient. Although she denies trouble swallowing and is receiving daily radiation to her upper chest, I have no doubt that the realization of her terminal state is sinking in, depression becoming the underlying factor behind the loss of appetite, or at least the desire to eat.

After the family took their leave, we sat on the bed holding hands, the three other women in the shared room all sitting in their small spaces watching their separate TVs. This institutional room is cordoned off into four sleeping areas with those ubiquitous and oh-so-ineffective "privacy curtains" found hanging from the ceilings of hospital rooms everywhere. It's sort of like being in a dorm room with three roommates, but none of you are studying, you all have some chronic illness or illnesses, and the activities scheduled for the "students" leave much to be desired, as does the food. The smell of urine is as ubiquitous as those flimsy curtains, and many residents simply sit in wheelchairs with empty gazes, marking time between meals. The lucky ones are visited by family members who bring homemade food, flowers, crossword puzzles, and books. The less lucky residents simply languish and make the best of an inadequate situation.

Meanwhile, my dear patient and I sat looking into one another's eyes and breathing together. I told her in Spanish that our connection is one at the soul level, and that I would keep her in my thoughts and visit as often as I could. As expected, despite her suboptimal circumstances, she inquired after my wife, son, and dogs, and was genuinely interested in the details of my response. We blessed one another and verbalized desire to see one another on Monday "si Dios quiere" ("God willing"). I playfully tapped the tip of her nose and left her with a wink, her smile fading as I reached the door.

Listening to Bob Marley's "Exodus" CD on the way home, I was reminded of the lyric I had heard this morning on my way to work: "Ooh when the rain falls it don't fall on one man's house". Although Bob was then referring to the eventual fate of the "downpressors" who oppress the poor and covet the riches of the earth for their own gain, I took it at that moment as signifying the fact that any of those people in that nursing home---my patient, or the woman in the wheelchair who was sitting and staring into space---they are all me, my brethren, my family, my mother or father. It was yet another moment of seeing the bigger picture, the forest for the trees, the life taken for granted, the gratitude for life so easily forgotten. They are only a reflection of us, as we are of them, no more or less deserving of love and compassion. It was a truly human moment, a reminder of so many gifts. I smiled and continued down the road towards home.

One Love, One Heart.

A Sad Moment

I've sent my second patient in as many months to a nursing home, and it's always a difficult and painful decision. In this most recent case, it is my 69-year-old patient with AIDS, depression, psychosis, and a large mediastinal (upper chest) mass which has turned out to be spindle cell sarcoma, a rare cancer which is very difficult to treat and impossible to cure. Although her daughter has cried many tears over the decision, her brief time at home last week demonstrated for us quite clearly that she is far too complicated and gravely ill to be managed at home, but far too stable to remain in the hospital. Hence our decision.

Even though this patient is no longer in our program, I have been seeing her as a "free care" patient for more than a year, no reimbursement coming to us for my work. Now that she's landed in long-term care, my official job is over, and I will simply visit her as a friend and try to console her for her loss of freedom and increasingly serious illness. Long gone are the days of my weekly visits to her house to fill her med box and chat, almost always leaving with a gift of plantains and fruit. Although our conversations have always been in Spanish, she still has consistently gone out of her way to say "I love you" and "happy weekend", even as her discomfort and pain increased. And when I visit her in the nursing home---no matter how distraught she may be---she will still ask me about my son, wife and dogs, and will, as always, appear to relish the answer when I tell her that they are all well.

I know that I have added quality and love to this woman's life, but I'm saddened that her life may reach its denouement in an institutional and foreign atmosphere, away from the smells and sounds of family life. Can I mourn for another who is not yet gone?

Crack!

Two of my patients who've been clean for many months are now using crack again. In times of stress, many of us turn to food, TV, slothfulness, and other addictions. In some lives, the lure of a cheap and fleeting high is too much to bear.

Last Friday, I called a patient that I haven't seen for a while and told her she'd been on my mind and I wanted to pay her a visit. She said that she'd been thinking of me at the moment that her phone rang and was not surprised to hear my voice. An hour later, I was at her apartment. After the usual pleasantries and inquiries about her health, I could tell that she had something to say but was having trouble forming the words. Due to her hesitancy and the way she looked at the floor and avoided my eyes, I knew that she had "picked up" again. I moved from the couch across the room, sat down next to her on the other couch, and put my arm around her shoulders. "Digame", I said. "Tell me". She admitted to using crack and I quickly assuaged her fear of judgement and reassured her that these things happen and we would work with her to find a way through to the other side. Her shame was a palpable presence in the room.

After giving her a flu shot and several hugs and words of encrouagement, I took my leave and moved on to other people, other places. Today I received a call that her heat wasn't working but she reassured me quickly that her bill was paid in full and it was just the fault of the landlord, not her drug use. But it's a sign that things are not as they should be. Again.

Addiction coils around the reptilian brain like a slithering blight, blocking out the light of reason. Ah, the failings and treachery of the human heart and mind.

Headline: Recovering Nurse

New England: Nurse slowly emerging from a relatively tiresome pit of fatigue and stress, sense of humor intact, Compassion-O-Meter still active. Some R & R is in order, but Nurse will live to fight another day. Respiratory symptoms bothersome but improving. Nurse will care for self and home-life for several days. Stay tuned for further developments in this never-ending and self-centered story.

The Nurse Laid Low, Revisited

Can the caregiver ever really let go? That is the question today. Calling in sick for a day is intelligent and difficult. Calling in sick two days in a row is not only brilliant but excruciating.

First, there's the feelings of guilt for burdening one's colleagues with extra work. Second, there's the feeling that one is missing something, forgetting an appointment, abandoning needy patients in their hour of desperation. Once one gets over that, it's clear that: 1) the patients will survive and access other portals into the healthcare system as needed; 2) you will be called upon to cover for sick colleagues over the long winter months as well; and 3) the world does indeed keep turning when you are sick at home, tissues and tea bags flying every which way.

The body has a way of letting one know when it's time to rest and take a breather, and if one doesn't listen, often the body will force your hand by making it almost impossible to keep going without dire consequences. That is my predicament this week. I've been burning the candle at three ends for months. I've been feeling well (albeit receiving occasional signals that my body was trying to tell me something) while also knowing that I was running a risk of pushing too hard for too long. Although I took a week off over the summer and many long weekends, my schedule at work and at home has kept my motor running at high rpm's, and now is the time to do some basic maintenance and catching up on self-care.

Last night, feeling like the dedicated professor, I did indeed go to school to teach my class, cutting them loose an hour early. With my raw throat and foggy brain, it was a challenge to lecture on diabetes and the care of the patient in shock, but I actually think I did a good job. Being sick, I went slowly, chose my words judiciously, and felt like I got my points across clearly and concisely. Teaching can really be quite fun, even when one feels like death warmed over.

Many of us in the "caring professions" have difficulty caring for ourselves and saying no to work and its incessant demands. We all know that work will swallow us whole and spit us out in lovely little pieces if we're not careful, and it really is up to the individual to use the power of personal boundaries and eschew the gravitational pull of the workplace when under the duress of illness or burnout. While taking a sick day might temporarily inconvenience patients and coworkers alike, it also speaks volumes about how we value ourselves, setting a quiet but powerful example for others vis-a-vis the ability to care for oneself in a world that values productivity so highly.

Today, my productivity consists of how many cups of tea I can drink, how many naps I can manage to take (after the furnace guys are done making a bloody racket), and how many different ways I can think of to restfully entertain myself as my body recuperates and recovers its homeostasis once again. Now off to boil some more water.....

The Nurse Laid Low

Alas, a sick day for the dedicated nurse. Calling in sick is always fraught with worries: Will my colleagues be overburdened while covering for me? Did I forget some earth-shatteringly important appointment? Will my voicemail-box be full when I return to work tomorrow?

Nonetheless, I must go to school tonight and deliver some semblance of an educational experience for my students, sore throat be damned! I think I'll eschew the usual lecture for small-group collaboration.....Hmmm.

So here I am, home on a rainy and cloudy day, snuggled in a blanket in the living room. Sleep is a useless endeavor as the guys from the heating company install a new $5000 furnace in our basement, banging away like there's no tomorrow. The old furnace came within a hair of exploding (really!) so we are happy to spend many thousands to avoid untimely deaths. (As Mark Twain once said, "Reports of my demise have been greatly exaggerated".)

Work as Identity Redux

Eight months ago, I briefly explored the idea of work as identity. This morning I awoke to thoughts of a similar vein, thinking about how much my identity revolves around being "a nurse", and to a lesser extent, "a teacher". It is an idea worth exploring further. Interestingly, I was recently asked permission to be linked on a blog which studies and follows work-related blogs, and I took the time to answer a questionnaire by said Scottish blogger/researcher.

As I wrote back in February, most people respond to the question "What do you do?" by describing their work-life, as if this is their defining role/identity: "I am a teacher/doctor/programmer/consultant/etc." It is rare and unexpected that someone responds in a more creative and less acculturated way: "I am a mother/father/son/lover/gardener/reader." Is this the same in other cultures? I would love to know.

For me, I still struggle and consider what it means to be myself in the world. How do I define myself? What is my place in the world? Some would say that, at 41 years old, one should be well aware of one's place, one's significance in the larger scheme. But I would counter that an examined life involves frequent questioning and retooling of one's identity, or at least thoughtful examination of one's suppositions and assumptions about oneself. It's easy to be complacent, but the examination of oneself can be revealing (and hopefully not too disheartening, as long as one is open to needed alterations in self-perception).

At this juncture of my life, being a decade into my first real "career", my "nurseness" carries a great deal of weight in my self-identity. In my late teens and early twenties, I was an "artist"---attending (and subsequently dropping out of) both the Philadelphia College of Art and The Pennsylvania Academy of Fine Arts. With a lack of discipline and without the stucture of school, "artist" gave way to "waiter", "bookstore manager", then "massage therapist", "yoga teacher", "housecleaner", "personal care attendant", and eventually "nurse". So here I am, Nurse Carlson, or as many of my Puerto Rican patients say, "Doktor Keet" (you do the accent).

Whether I have written it here in this venue or not, I do sincerely long for a day when my identity does not revolve around work. I look forward to a day when I simply am an individual in the world, living a good life and doing good things in the world. I do not generally define myself as "an American", although I do define myself as a married forty-something man with an incredible son and wonderful wife. Even those and other labels: father, husband, heterosexual, man, homeowner, citizen--what do they describe? What do they say about me as a person? Do they describe my presence in the world, my contributions to society at large? The answer is yes and no, of course, but mostly no. Those words offer mental pictures, generalizations upon which larger suppositions can be based, but they do not define who "Keith Carlson" is, nor should they.

The next time I am at a party or social gathering, I would like to challenge myself to answer differently when questioned about "what I do". How can I finesse such a conversation? How long will it take for me to eventually blurt out, "I'm a nurse"? How long would it take for the questioner to say, "Yes, you are a husband and father and reader, but what do you DO?" How long until I give in and launch into my "tape" about my work? Can the other person be fully satisfied by our conversation without safely wrapping me in a box labeled clearly with a defined career?

There is something else to bear in mind that can easily reveal our cultural judgements about certain occupations. If someone we meet responds to the same question regarding work with a sentence that begins with, "Oh, I'm just a __________"---you fill in the blank---how do we respond to such a statement? What do we immediately think when the person says they are "just" a secretary, a janitor, a housekeeper, a clerk, a delivery person, a home health aide? What does it mean when an individual verbally apologizes for their work by preceding their title with the word "just"? Do they expect us to judge them? Do they expect pity? Do they feel less-than in the broader sense of work being intrinsically tied to identity and worth in our image-obsessed culture? They do not necessarily want pity, but they most certainly must feel afraid of being judged, and must often feel that their place in the world may be seen as less glamorous, less important, less crucial to the workings of the societal machine.

Let's be honest---an individual says that they are a mechanic or window-washer and many of us--myself included--will immediately think classist thoughts, or mentally pigeon-hole that individual as working class or under-educated. Do we know for a fact that the window-washer is uneducated? Do we know that he doesn't go home and study existentialism and publish a blog about his findings? Do we know whether he has eschewed another career for a simple life wherein he can pursue his intellectual interests without the burden of 40 hours of work and a long commute to pay for the student loans he never wanted? We must challenge our assumptions about others and their relative "value" in the world. We must try to define others by their actions, not their labels. This is a message to myself as much as to anyone reading this missive. It is a universal message, and one worthy of introspection and practice.

As for me, my identity is currently intrinsically tied to my career, my work, my self-as-nurse. Many nurses appear to feel similarly, even after retirement, perhaps because nurses are held in such high esteem in this culture. If one were asked about their instinctive desire to trust a dentist, nurse, or lawyer, I would assume most people would choose to trust the nurse, even before meeting that person. Whether that is a fair judgement or not, I believe it to be true, and our culture continually reinforces such stereotypes in myriad ways.

Thus, the challenge is to meet others and interact in the wider world with as little judgement and preconceived notions as possible, measuring others by their character and personality, not by their stated career or self-definition. The next time I speak to the janitor at the school where I teach, I will open myself to him a little more. I know his name because I asked, but what more can I know? What makes him tick? Why is he as interesting---or more interesting--than the president of the college? Yes, he is a janitor---that is how he puts food on the table---but he is so much more. And I am more than a nurse and teacher. "Human being" is a good place to start, and that definition levels the playing field for us all.

On Being a Witness to Suffering

What does it mean to be a witness to suffering? What impact does it have on one's psyche and soul to bear the very human burden of sharing others' pain? Is there a cumulative effect? Does one become immune or hardened against the pain of others? Is there a point where one just has to quit altogether? These are ostensibly rhetorical questions which I frequently ask myself in the midst of my work, especially during periods of exceptional stress and intensity.

What does one say to a patient who has an enormous unidentified growth in her upper chest for which very little may be done? How does one console the middle-aged man addicted to crack cocaine and destroying his life? What tactic of therapeutic counseling is best when dealing with a 50-year-old woman with addiction to migraine medications? How to assuage the fears of a lovely woman with progressive multiple sclerosis who can no longer cook or do laundry, let alone go shopping for clothes with her teenage daughter who hates her mother for being chronically ill? How can one offer hope to the gentleman with throat cancer, a tracheotomy, a feeding tube, and chronic pain? Is it possible to salvage a life which is apparently imploding before one's very eyes? These are examples of not-so-rhetorical questions which figure largely during my interactions with patients on a painfully frequent basis.

There are many answers, but each answer also raises further questions, rhetorical or not. And with each patient who leaves my orbit---either through death or another less dramatic form of programmatic attrition---another takes their place, individuals whose stories will also become threads in the fabric of my Monday-to-Friday life, seeping into my weekend consciousness all too frequently as well (an occupational hazard, apparently).

I sometimes ask myself why I choose such work, electing to continue to serve those in pain, those suffering, those whose lives are unorganized, chaotic, riddled with disease and dysfunction. There's not always an easy answer to such ruminations, and on days when I witness people making incredibly poor life choices and propelling themselves into further illness and dysfunction, I cringe at my dedication and wonder if my limit will soon be found, the emotional levees breached, the city of my mind flooded beyond its capacity to continue to witness such self-destruction and pain. Until that time, I imagine, it is the golden moments---such as the recent death of my sweet patient and the gratitude of his caregiver---which propel me forward and reinvigorate my desire to serve.

Please understand that, among my eighty-ish patients, there are a good number (15 to 20, perhaps?) who care well for themselves, make excellent choices, practice flawless self-care, and respond to their environment and circumstances logically and sanely, even under duress. Serving these individuals is a pleasure, and I will bend over backwards to assist those who are willing to meet me half-way, those who give 100% of themselves to their own care and survival.

But it is the others---a majority---whose care is burdened by the sense that one is working against psychic and cultural forces upon which one can have little influence. There are some patients who seem to completely lack all powers of personal insight, who lash out at the world, flailing in desparate loss of control and the inability to step outside of themselves and objectively examine their own behavior and place in the world. Yes, socioeconomic barriers, racism, and cultural dynamics are also at play here, but that does little to assuage one's feelings of hopelessness, frustration, and yes, anger, when banging one's head against a wall day after day appears increasingly futile and counter-productive.

Nonetheless, it is the human spirit which powers our lives and our choices, connects us to one another, and energizes our will to give to others. Yes, I have also suffered--most profoundly the unjust killing of my dear friend Woody, but yet my suffering seems small when compared to the trauma which others have witnessed, often first-hand. Drug addiction, physical violence, untreated mental illness, poverty, malnutrition, institutionalized racism, economic violence---I am free of such dramatic experiences, and thus I am afforded opportunities which others have never been blessed to know.

Sitting in my comfortable home, surrounded by my relative luxury, I rest from the week's travails, and revel in the fact that I have this glorious time and comfortable physical space in which to take in my many blessings---blessings which I can so very easily take for granted if I am not conscious of their transitory nature. No matter how difficult my path may seem at times, it is a path of priviledge---priviledge unknown by so many. Paradoxically, it is this very priviledge that allows me to recharge my batteries and return to the fray each week. Burnout is not an option but is an ever-threatening reality. The weekends offer time to wash the stress from my body, release the cortisol from my tissues, and ready myself for the days to come, the cycle of life and work, of service and giving, of the turning of the page. Thankfully, today's page was a gentle read, and I am grateful for the ease with which it unfolded.

As for suffering, it is still my karma to work to lessen the suffering of others, and to that end I'll continue my work for now with as much humility and patience as I can muster.

May all beings be free from suffering.

No Better Reward

Here is the text of a card I received yesterday from the incredibly kind and compassionate caregiver of my patient who recently died....

"It only takes one smile to offer welcome, and blessed be the person who will share it. It only takes one moment to be helpful, and blessed be the person who will spare it. It only takes one joy to lift a spirit, and blessed be the person who will give it. It only takes one life to make a difference, and blessed be the person who will live it (by Amanda Bradley).

"Keith, thank you for your support, care and love....God bless you every step of your life. Please give thanks and and love to those who cared for _______________ in his journey in life. Keith, I'll never forget you."

There are no words......

Relative Quiet

With the dying of my patient last week, the transfer of a time-consuming patient to a nursing home, and another patient discharged from the hospital today, there is a temporary lull in the proverbial storm. Thank you, Powers That Be!

Luckily, my work life has taken a turn towards quiet this week as things at home are in full swing. Our newly renovated basement apartment is now rented, a painting party last night (including the new tenants) finished a first coat on almost all of the walls, and that home-under-construction feeling is almost done, the operative word here being "almost". Until the new tenants have moved in, the small touches and fixes completed, and a sense of normalcy ensues, I won't feel completely able to rest at home. It's recently seemed like we're under seige, with the normal routines somewhat convoluted and the fabric of our daily lives slightly altered. When is life not altering in some unforgiving way, you ask? Rarely is it not, but the crispness and coolness of autumn will be welcome as the home-front settles down.

Four weeks into my third semester of teaching nursing, my prep-work from last year is now bearing fruit. Without having to study, take notes, prepare lectures, and create overheads every week, I am relieved of the constant preparation and now feel like I can more fully enjoy teaching, although those 13-hour Thursdays are wearing at times. Nonetheless, I love sharing my knowledge---such as it is---and trying to inspire yet another group of interested adults as they enter the nursing world. It's one thing to discuss pathophysiology and medications, but it's a completely different pursuit to actually explain what one does as a nurse, especially when speaking of the intangible, the ethereal, the energetic/intuitive aspects---this is the "art" of nursing. One must not forget the pathophys, but one must also bear in mind the humanity of the person behind that anatomy and that illness. Memorization can get one just so far, and then the emotional and spiritual aspects of one's self must emerge and connect with others meaningfully. Imparting this is a challenge, especially in a classroom setting. I hope that my colleagues on the clinical front can take time to address the real human needs of our students' patients. It is still humbling to teach, and even more humbling to know that my words are guiding and shaping human minds that will directly address the physical, emotional, and spiritual needs of the ill and dying.

May my words be effective in communicating what needs to be said clearly and efficiently. May these students go out into the world and touch others in a way which is always effective and occasionally transformational. May I also simply make it through each day and come out the other side.

In The Neighborhood

The neighborhood where I work is a troubled area rife with poverty and its discontents: drugs, crime, and frequent violence. As I noted in a November post, my car was broken into prior to Thanksgiving and I lost my car stereo and a sense of safety and invulnerability.

Some other neighborly incidents:

One day last year, I was exiting the clinic with a doctor with whom I work. We came outside for a breath of fresh air around 3pm and immediately noticed something was wrong: his car, a 99 Honda Accord, was sitting on four plastic milk crates, all four wheels having been removed while the car sat in the clinic parking lot in broad daylight! Those 99 Hondas are a hot item!

Our noble medical director fought to have a small store included in the plan for the building in which the clinic has been housed for some years now. The little store caters to the Latino population in the neighborhood and supplies many elders with milk, avocados, and many Latino staples at decent prices, the store being a short walk from the nearby subsidized housing projects. There are often electric wheelachairs and scooters parked outside--the store is too small for even a small wheelchair, and only two school-age children are allowed in at a time to protect against shop-lifting. That said, the windows of the little store are broken with bricks and stones---and occasionally bullets---an average of four to six times a year. This Latino-run business serves the community well, but still suffers from vandalism, which could cause increased prices or possibly a permanently closed store.

Just outside the store, the landlord paid for some lovely shrubs to be planted a few years ago. The following week when we returned from a long weekend, the shrubs had been stolen, dug out from the ground with their root-systems still intact. Luckily, the replacement shrubs have escaped a similar fate.

Last week, one of my favorite docs was working late at the clinic, attending an HIV providers' meeting and finishing some notes. He left the building and began to back his car out of the lot, but remembered something on his desk and ran back inside, locking his car behind him. He was only in the building for ten minutes, but by the time he came out, his trunk was broken open, a window smashed, and all of the contents of his car had disappeared: stethoscope, brief case, car stereo, CD collection, and other flotsam and jetsam. This particular doctor works 50 hours per week, splitting his time between the clinic and the county jail, where he provides award-winning HIV-care for incarcerated men and women. His dedication to medically underpriviledged populations is an inspiration.

The same night as the theft from this doctor's car, a teenager was knifed to death just three blocks from our clinic on a street where many of our patients live. The son of one of our patients witnessed the murder---as did a dozen other people, it seems---but no one is talking and the perpetrator was never apprehended.

So, this is my work neighborhood, but this area is also graced by hundreds of lovely and giving people, a community garden worthy of a Puerto Rican "finca", the sounds of children and adults in the park on sunny afternoons. I am greeted daily with salutations of "hola", "buenos dias, doctor", and "Dios te bendiga" (God bless you). It is a microcosm of the wider world. I love it, I hate it, I long to leave it, and I cannot think of doing so. It is my neighborhood for more than forty hours each week, and it is in my blood. Although I generally feel safer in New York City than I do in the city in which I choose to work, I feel protected and blessed, knowing that my karma of service will shield me from harm and mistreatment.

May all beings be happy. May all beings be free from suffering, and may this neighborhood---and all places where people and animals make their homes---be blessed with freedom from violence, from Boise to Baghdad. This is my wish in this moment. May we all strive to make it so.

Death Pays a Call

Yesterday morning, we were able to smoothly transfer my dying patient to his home for his final hours with family. The hospice nurses met me at the home, and we spent 90 minutes teaching the caregivers different techniques: how to move and reposition him to maintain comfort and decrease pressure on bony areas; how to administer extra IV morphine and Ativan for pain and agitation; how to provide oral, skin, and catheter care; what to do when his breathing changes and he slides into unconsciousness; what to do when he dies. The nuts and bolts of midwifing a death.

A call came late yesterday afternoon that the family was beginning to implode, verbally attacking the main non-family caregiver, creating a very stressful atmosphere. Although the dying gentleman was almost in a coma, hearing is always the last sense to be lost, and he reacted with grimacing and great agitation to the interpersonal melee unfolding around him. I was able to calm the situation somewhat over the phone, and hoped that all would be well enough for my dear patient to have a peaceful night, which would later prove to be his last night on earth.

I arrived to the home at noon today, and all was well and tranquil. My patient's respiratory rate had been decreasing and becoming more irregular, with longer and longer pauses between breaths, a sure sign of his steady decline toward death. His urine output was becoming darker and more scant, signaling that his kidneys were actively conserving fluids, producing as little urine as possible, trying their best to keep the body's fluid and blood volume at an acceptable capacity for the cancer-ravaged body. He was now completely unresponsive, the room's ambient sound being that of the pneumatic bed and oxygen tank whirring as white noise above the sounds of traffic through the window and voices from the kitchen and living room.

Saying that I knew this would be my last time with him, the family allowed me a few moments alone at the bedside. I communicated in Spanish that he was now free to leave, the family was together, friends gathered, everything in readiness for his departure. There was nothing more for him to be concerned about, all business had been taken care of, and nothing now stood in the way of him leaving his body. I encouraged him to thank his body for its service, and prepare to leave it behind for good. I kissed his forehead and left the room.

In the living room, I was generously offered a huge plate of traditional food which was impossible to turn down. We ate and chatted, and I shared with several people that the dying will often wait until all is quiet and no one is at the bedside to take their leave. It is a common phenomenon, perhaps because the dying person wishes to spare his or her loved ones from witnessing their departure, preferring to do it alone. After all, we are born alone and die alone, and no one can travel those passages for us. It is a singular event in life and one to be faced with aplomb and tranquility if at all possible, not to mention great courage and humility.

Not fifteen minutes had transpired between my goodbye soliloquy in the bedroom and finishing our meal in the living room when someone went to check on the dying man who was the central focus of everyone's attention for so many days now. I was abruptly called into the bedroom, and I immediately confirmed what was vividly apparent--he had died quietly after I left the room, leaving his body while we all ate our lunch together in the living room. Perhaps he really took to heart what I had said and realized it was time to go. Perhaps he would have died at that time whether I had been there or not, but being given permission to go, being blessed on one's way is a gift that can always be given to the dying, and I felt honored that I was given the gift of being present during this death, both for the dying and the living.

The scene that followed was classic: tears, hugs, weeping sons arriving afar receiving urgent cell-phone calls, neighbors coming to pay their respects. I, the professional, wandered from room to room, offering helpful words, concrete advice, fielding questions, and preparing the body. Not being a visiting nurse, per se, I am not licensed to pronounce a patient dead and sign the death certificate in Massachusetts, although I have been priviledged to perform this service in the past when I did have that legal right and responsibility. I called the hospice nurse and reported the time of death, requesting a nurse be dispatched as soon as convenient.

Exiting the building after warm goodbyes filled with kind words, a certain fullness pervaded my spirit, and a level of emotional exhaustion that cannot be described, along with a feeling of elation and freedom as well. Unfortunately, three more very busy hours of work would then ensue, robbing me of the opportunity to further explore this state of being. I was instead ruthlessly flung back into the maelstrom of the day, removed from the timelessness that seemed to pervade that apartment as we contemplated the death of a very noble man.

But now I can reflect on the experience, bless this soul on its journey, and enjoy the knowledge that my guidance played a small part in this soul's ultimate transition from the physical world to the spiritual realm.

Yes, Death paid a call, and I would say that the call was a sweet one.

Comfort Measures

As the week progresses, my patient with stomach cancer declines. The progression of his illness over the past few days has necessitated conferences with the family and health care proxy, meetings and phone calls, and finally a decision yesterday to institute "CMO" status: Comfort Measures Only. This means we have withdrawn IV fluids and IV antibiotics, ceasing all discussion of how to stem the growth and ferocity of the cancer. He is now simply on morphine and oxygen, with a urinary catheter inserted. Death is certain, perhaps within 2-3 days.

The family took it well, although there are several members who were not present for our discussion yesterday afternoon and who will need some education. Hospice nurses are coming to the hospital this afternoon to meet with me and the patient's health care proxy/caregiver, and we will initiate a transfer to home for the late afternoon if all goes well. There he'll be surrounded by family and friends who will be encouraged to maintain a peaceful and quiet atmopshere. Hearing is said to be the final sense to be lost prior to death, so even if the dying person seems to be unconscious, it is a golden opportunity to say anything that has been left unsaid.

Things have moved along at a rapid pace for this lovely gentleman, but the care which he is receiving is motivated by love and a deep respect. I assume he will not survive the week. I too will say my good-byes......

Cognitive Dissonance

Yesterday's post brought home to roost some cognitive dissonance which I've been experiencing as of late. If you read this blog regularly, you might guess that this dissonance revolves around work and identity.

In my full-time day job, I now have approximately 8o patients for whom I am responsible. A medical assistant follows about 25 of those patients, but I am still legally responsible for their care and carry them all under my license. The pace at which I live my 9 to 5 existence can be exasperatingly fast. Being a healthcare setting, everything I do must be properly documented, nursing notes being legal documents to which one affixes one's signature. I teach my students that any note which a nurse signs can later be used in a court to question your actions (or lack of action) in any circumstance in which the nurse was involved. Omission of information can sometimes be as damning as adding information. What you did not do can sometimes be the subject of inquiry. While I do not live my life worrying about potental law-suits, I always bear in mind that a prudent nurse will document well and completely, affixing a signature with as much confidence as possible.

With that in mind, I examine what a day can be like: planned home visits or office visits with patients; dozens of calls and voice-mails; spontaneous walk-in visits from unexpected patients; frequent crises which need immediate attention; interactions with other professionals; case conferences; documentation; internet research; symptom management; care plan reviews; and myriad other administrative and clinical tasks which cannot be listed here for lack of time and willingness to do so. Each call and each action necessitates documentation. The pile of unfinished notes grows throughout the day, and with my sieve-like brain under stress, doing notes the next day and remembering what transpired is a challenge. I sometimes feel like I need to explode or the information will begin to leak out of my ears in an unsightly manner.

The stress of my work is palpable. I serve a population which is poor, with low levels of education and sophistication (with a few exceptions), lives of crisis, strained relationships, financial hardship, and chronic illness. The level of dependence and need can be overwhelming and I often long to remove myself from the struggle. However, there is such life in what I do, such satisfaction in the positive aspects, that it keeps me coming back. My agency is also a pilot program providing cutting-edge care to underserved populations which is only equalled in two or three other programs in the country at this time. There is a political nature to our work which is enthralling, and while we're still figuring out how to do what we do (and convince others that it works and is worth replicating around the country), we struggle with the burdens under which we toil. Large caseloads, needy patients, and overseers who demand a great deal from us in order to justify our existence.

Looking objectively at my work, when I think of leaving for another position, I imagine how much easier it could be, how much more sane. But then I look at this team of people with whom I work, the heart and good-will at the center of our work family, coupled with the political and social ramifications of what we are doing, and I cannot find it in my heart to seriously examine other work opportunities. I've been offered a full-time position at a corporate visiting nurse agency which is begging me to work for them, but it is just that: a corporate for-profit national chain of nursing agencies which lacks a true vision other than profit and providing generally competent nursing care. While I am attracted by the small caseloads and change of pace, I'm not drawn to the people, the work environment, or the politics of the organization. I do per diem visits for this agency a few times a month, but involvement beyond that seems unlikely to me.

Healthcare in this country is in crisis. Services to the poor are consistently being cut. Disparities of race and socioeconomics are even more apparent as the aftermath of Hurricane Katrina shares its lessons. I struggle to stay afloat, to maintain my composure, but my dedication to serving these populations does not wane. The cognitive dissonance is born from concern for my own well-being, my own health, and the consequences of stress on my body and mind. For now, I stay put and make the best of it, looking for ways to maintain health, strike a balance, and save myself from long-term consequences of stress. Reading Tracy Kidder's book Mountains Beyond Mountains recently, I'm struck and awed by Dr. Paul Farmer's tireless worldwide struggle to bring healthcare to some of the most underpriviledged people in the world. It's people like him who inform my own career decisions and empower me to stay the course. It has been said that no one would want "I wish I had worked more" engraved on their tombstone. But perhaps "I'm glad to have helped so many" would be a worthy alternative epitaph. The secret lies in how to lengthen others' lives without consequently shortening one's own.

More Musings on Nursing

As a thunder storm roars through the area, I set aside my school-prep and reach for the laptop. The rain spatters on the transparent roof of the porch, the smell of ozone in the air....

What a week! I have a number of patients weighing on my mind, as well as my professional life and career in general.

First, the gentleman with gastric cancer grows worse, death somewhat closer every day. This weekend they'll be starting palliative radiation in an attempt to slow the bleeding in his stomach from the mass which has grown there. The cause of his intractable vomiting is now clear: the mass is completely blocking the outlet from his stomach to the small intestine. Anything that enters his stomach has nowhere to go but back up from whence it came. His oncologist broke the news to him that he will never eat or drink again. He stared into space at that moment, a tragic realization sinking in.

We also had the very difficult discussion of resuscitation status and whether or not he wanted to be DNR/DNI (Do Not Resuscitate/Do Not Intubate). I had to explain the reality of what would happen if his heart stopped: the "Code Team" would come running from all over the hospital, they would put an artificial airway down his throat, and they would commence CPR immediately. In his condition, many ribs would be broken in the process, and it would be a traumatic and potentially violent event for everyone present. What we call a "Code Blue" is not pretty, and it is rarely depicted realistically on television. He has chosen to be DNR/DNI. On Monday, I'll go straight to the hospital and ascertain whether or not they decided to place a tube in his small intestine through which he could receive feedings and fluids, bypassing his ravaged stomach. He clearly stated that he wanted us to do everything to keep him alive and comfortable as long as possible. He has been in my thoughts all weekend.

My sweetheart of a patient recently discussed in another entry, is still in the hospital, the mass in her chest still unidentifiable after four biopsies. A more invasive surgical biopsy was attempted but aborted when her oxygen level and blood pressure began to crap out during the induction of anesthesia. We sit together in her hospital room holding hands every day as she becomes thinner and more dejected, never failing to ask me about my wife, son, and dogs, and to send her blessings for their well-being. As her face grows thinner and more gaunt, her eyes become more prominent, orbs of love and faith tinged by the knowledge of her obvious mortality and shortening life. She also will not leave my mind this weekend.

Aside from work, I now have school and teaching added to the mix. I struggle to learn my students' names, try to correct mistakes I made last year as a novice professor, and make good use of the materials created through hours and hours of preparation last autumn. Today I was able to simply edit and slightly change an exam created last year, cutting the time for preparing the exam for printing from several hours to perhaps thirty minutes. Teaching is a pleasurable activity made burdensome by the preparation involved, but as I gain experience and make us of my materials from last year, the ratio of burden to pleasure should widen.

That said, teaching gives me a way to take the nuggets of knowledge which I glean from my direct work with patients, and distill them down into illustrative stories which I can then relate to my students in a way which brings our subjects of study to life. The correlation and relatedness of my clinical work and teaching helps me to see my work in a different light, as well as to use my relationships with patients as a teaching tool.

I find my identity as a nurse very strong right now, and while I yearn for a time in the not-too-distant future when my work is not so central to that identity, I accept for now that there's plenty to learn about myself in that milieu. My greatest hope is that I will intuitively know when I'm ready to make a change and create a simpler, less stressful worklife. Until then, I bounce from the frying pan to the fire and back again, yearning for the days when I can rest on the back burner.

Among the Living

Yes, dear Readers, I am still among the living.....er, blogging, as it were. This last week has been a storm of busy-ness, my time to write completely precluded by...now, what was it called? Oh yes, life. Yes that's it, life got in the way of this other very important aspect of life which is near and dear to my heart. This blogging business is certainly addictive and tonight my "blogging jones" must be satisfied, at least desultorily.

Blessedly, last weekend was not overridden by work and chores. Rather, it was filled to overflowing with the celebration of Mary's birthday which happens to fall on September 11th. We have spent the last four years striving to reclaim her birthday which seemed to be usurped by the 2001 event which cast a long shadow over anyone wanting to use that day for celebratory purposes. Needless to say, we spent the better part of the weekend celebrating in the appropriate manner.

On the homefront, we are having our somewhat finished basmement almost completely finished, with a small kitchen and new floors and windows, in hopes of renting the space to a lucky grad student or young couple who do not mind living in a very dry basement with two windows. That process has taken a great deal of our time and energy. While we are not doing the construction ourselves, anyone who has had construction done in their home at any time understands the disruption that it can cause to one's accustomed living patterns, not to mention the process of seeking out, and interviewing, potential tenants. More on that, perhaps, at a later date.

School is back in session and I just completed evening #2 of lecture in the LPN course which I am teaching for the 2nd year in a row. One of my greatest challenges is learning my 24 students' names, as well as the fact that I teach from 5:30-9:30pm after working an intense 8-hour day. Having taught the class last year, my prep time is thankfully less taxing this time around, but I still spend a fair amount of time at home in preparation. Is it worth it? Maybe I could make better money elsewhere, but the act of teaching is an exciting process which I do sincerely enjoy.

My work soars along at sonic speeds. The gentleman with stomach cancer of whom I recently wrote is failing fast, and I helped to get him directly admitted into the hospital on Tuesday when I visited him at home and he was obviously dehydrated. I was sharing with my students this evening that, when visiting a patient at home as an autonomous nurse, there are many judgement calls which I must make which do give me pause. I have luckily never made a decision that ended in a premature death, but I always know that my license and my conscience are both on the line when a patient's life is at stake. It can be a scary thought which often informs our decisions as healthcare professionals.

Aside from that, my life has been a piece of cake with not much to blog home about. I just had to post something tonight and say hello to whomever has hung in there and checked in to see if I would surface after a week's pause.

Now for some quick prep for tomorrow and off to bed with my honey.

Bon nuit.

Out of the Frying Pan

Today I was involved in a scene at a patient's home that was straight out of a movie. My patient, a middle-aged man not born in this country, has a history of polysubstance abuse, Hepatitis C, violence, a personality disorder, and a former life of foreign miltary service with a history of committing and witnessing violent acts of warfare. I will not disclose his city of residence, age, or his country of origin.

People involved in this gentleman's care are often afraid of him. He can cut an imposing figure until you look into his eyes and see the wounded child crouching in his heart. This man lives in fear and psychic pain, and his family member with whom he lives also lives in fear and pain. I was called to the home because it was apparent that my client had possibly taken way too many antipsychotics and benzodiazepines over the weekend, prescribed medications that he will frequently supplement with crack cocaine. The fact that he has recently been under threat from a local gang does not inspire confidence in his coping and interpersonal skills.

Based on an urgent request from the primary physician, my unannounced arrival to the home with a third-year medical student in tow did not meet with a warm welcome, although his family member was relieved that we had come. When the situation became somewhat threatening, I was sure to always keep myself between the patient and the medical student in my charge, and constantly de-escalated the conversation and redirected the patient to why I felt he should go to the hospital.

At one point, my patient was on his hands and knees in the kitchen, babbling incoherently in his native tongue mixed with English, crying like a baby. Shortly after, only semi-coherent and walking very unevenly with eyes at half-mast, he exited the home to smoke outside and I knew that there was no stopping him. From previous experience, I understood that physical touch of the most minimal kind could send him over the edge, so I simply followed him outside, leaving the medical student to chat calmly with the family member, who, when asked, reassured me that there were no weapons in the home. (Later, I would glean a great deal of information from the medical student, who truly got an "ear-ful" while I was outside.)

Once outside, speaking with the primary doctor on my cellphone, I asked her to call 911 and request a police cruiser and an ambulance. After fifteen minutes of following my patient up and down the hot street, the ambulance arrived and we coaxed him onto the stretcher as he whimpered and pleaded for mercy. The police arrived ten minutes later when we were getting ready to leave the scene and return to the clinic. Better late than never, I guess. They must have been at Dunkin Donuts.

This was simply a 60-minute scene at the end of a day filled with telephone calls of desperation, illness, another unfolding crisis, two lovely and uneventful home visits, and the odd prescription refill. A day in the life.

So here I sit on the porch, the frogs and cicadas beginning their evening chorus, and I prepare to officially document all that I did at work today before I forget the gory details. It was a rude awakening from a perfect weekend, and I'm pretty sure I missed the frying pan.

Take a Breath

Friday morning, a day off from work, elongating the Labor Day weekend to four days. Hallelujah.

What a week. The Gulf Coast disaster has engulfed the national consciousness as New Orleans seems to slide into absolute chaos. Mary has approximately fifty family members in the New Orleans area, thirty of whom are first cousins. We did not have word from any of them until last night and we're thankful that they're all safe, although several homes appear to have been lost. Another good friend escaped to Austin and thinks he'll remain there permanently.

Aside from the tragedy in New Orleans, Florida, and Mississippi, the stampede and scores of unnecessary deaths which resulted in Baghdad earlier this week is also fuel for despair and a desire for change in the world. One could see why certain segments of society might see this as the beginning of "the end times". I don't know about the end of the world, but I sure would like to see an end to needless suffering in the world.

Closer to home, the biopsy of my dear patient's chest mass was inconclusive other than to say that there is necrotic tissue in there, underscoring the notion that the spots on her lungs are very likely malignant. The next move is a trans-tracheal or trans-esophageal exploratory biopsy, basically a tube with a camera snaking through the trachea or esophagus into the chest to take a real-time peek at what's happening in there. I stopped by for a visit to my patient's hospital room yesterday, prior to leaving for my four-day weekend. Her depression and loneliness were palpable, and we sat on her bed holding hands. I noticed that she hadn't touched her lunch, and for the second day in a row I encouraged her to drink an unopened can of Boost to keep her energy up and receive at least some nutrition. She agreed to do so only if I shared it, so I poured the lion's share into a cup for her, and drank the remaining 1/4 can of thick vanilla liquid after a quick toast to her health. (I thought to myself, "If doctors I know have taken AIDS medications just to see how the side effects feel, I can stomach a bit of Diet Boost".) It wasn't bad really, though I bet the chocolote is better.

The gentleman with metastatic stomach cancer who I've recently written about is beginning to fail. Although he is still home, he's now taking almost nothing by mouth due to his almost constant nausea and vomiting. This does not bode well for him ever being able to tolerate chemotherapy, so I've begun the difficult conversation about end-of-life issues, such as resuscitation status, health care proxies, funeral arrangements, etcetera. Due to the family's insistence and my encouragement for them to explore every option, we're now researching putting in a "J-tube", a feeding tube which would bypass the stomach by going directly into the small intestine. It is an easy procedure in which a small incision is made in the central abdomen and a small tube is inserted into the jejunum, the first section of the small intestine which attaches to the outlet from the stomach. Specially prepared food is then injected through the tube directly into the intestine where the majority of nutrient absorption occurs. Many people don't realize that it is altogether possible to live without a stomach since very little happens there in terms of digestion, other than the breaking down of foodstuffs into what comes to be known as chyme. Granted, the stomach assists in the absorption of Vitamin B-12 and several other nutrients, but its lack of involvement in the digestive process can be replaced by other therapeutic means.

With both of these patients in tenuous situations, and one of them at home in need of daily checking in and symptom management, it was very difficult for me to let go and tell them I would be back in 5 days. There's a certain "ownership" of a patient's care that one can begin to feel, and one can often experience resistance to entrusting these tasks to others, no matter how trusted and skilled they are. There is also admittedly an ego-level attachment to not "missing out" on some turning point, something perhaps akin to what a parent might feel when their young child experiences a developmental milestone while at day-care. ("Oh, Mrs. Smith, little Sallie took her very first steps today! I wish you could have been there!"---I imagine many daycare providers are sensitive to this post-modern parenting conundrum and perhaps refrain from telling a parent everything a child does, for fear of the parent feeling utterly destroyed that they missed a child's first step....) But I digress.

Anyway, as you have surmised, attachments can hinder a healthcare provider's ability to "let go and let others". For now, though, I sign off from both work and blogging, preparing instead for a 48-hour trip to lovely Cape Ann, Massachussetts, where we will visit friends and frolic with my brother and his family who are vacationing there. Having lived in Gloucester, MA for several years as newlyweds, there's a nostalgic feeling to our visits to the other side of the state, and the weather looks promising. Our son and his girlfriend will also be there for the weekend, so we look forward to some needed family time. Even as we rest and recuperate, we'll of course bear in mind the suffering of others, and remember that there but for the grace of God(dess) go we.

Signing off til Sunday or Monday, giving thanks for the Labor Movement, the kind folks who brought us the weekend.....