A Room Outside of Time

That day started out like most others. I got into my office/car, slammed some espresso, and headed toward St. Louis to see some patients. First on the roster were two patients at a nursing home in Dogtown, one that I barely knew and one that had changed my whole perception of the world. As I entered Muriel’s room, it was obvious that things had taken a sharp decline since I last saw her two weeks previously. I was still choked up as it had been been exceedingly difficult to accept the inevitable–my friend had slipped into the foggy, grey area where life and death mingle and court one another, slyly negotiating until the baton is passed and the next leg of the relay begins.

Here are the facts–the room was much hotter than I’d expected and the shades were pulled shut, signs that she had neither the will nor the need to complain about such trivial, earthly matters. Her right eye (the “good” one) managed to open just briefly, but long enough for her to register that it was me and to prompt a heartbreaking smile to her tired face. There is something incomprehensibly endearing and awe-inspiring to have someone that is in such an utterly profound place of introspection tinged with unimaginable mental and physical weariness actually expend a measure of their precious energy to let you know they are glad to see you. Muriel was more than one of my patients–she was a fellow traveler and a true friend.

Born an underprivileged black woman in an era when it was even more difficult to be, Muriel decided early on that she would not participate in many of the foolish and unnecessary insecurities and fears that plagued most of the rest of us. She would tell me upon our first few visits that she had read one book that had freed her, had taught her how to understand people, how to deal with them, and how to maintain her own dignity and self-confidence. That book was “How to Win Friends and Influence People” by Dale Carnegie. I promised her I would purchase it and read it. I did so and strongly recommend it to anyone that knows how to read and wants to participate more successfully in society. For this reason alone I am greatly indebted to her, but her easy persuasion in this matter was insignificant compared to the peace and joy she brought to my life. When I first met her she was living on the 26th floor of a subsidized senior-living apartment building that I had driven past hundreds of times and had never even known was filled with residents. She was nearly bed-bound and only got up to use the restroom, to shower, and to change her clothes. Because of this she would leave the door to her apartment unlocked for visitors, and it was also because of this that I walked in on her fully naked in the process of changing her clothes one day. Far from being horrified, she just cackled hysterically and apologized profusely that I “had to see that old body”. That is just the way she was, always thinking about the other person. When the time came that her cancer had maliciously rendered her completely unable to care for herself, she refused to allow her son to bring a television or radio to the nursing home lest he have to return and pick it up after she had passed. Several years before she had required a routine eye operation that was botched by an inexperienced surgeon. After several more surgeries failed to correct the damage incurred during the first attempt, Muriel not only decided to accept the fact that her eye would never be the same, but she insisted that the surgeon receive no reprimand severe enough to permanently affect his career. Her capacity for forgiveness was astonishing.

I usually scheduled our appointments for late afternoon on Fridays as our visits were much-needed and welcome unwinding sessions after long weeks. Sitting next to her bedside, discussing the absurdities of being human on this planet, I reveled in my good fortune to have become a part of this woman’s life. Even after she moved to the nursing home her needs were few and her wants were nearly non-existent. The one thing she requested was a bird feeder to place outside her window so she could observe the behavior of the various birds she would often hear, but would usually not venture low enough to be visible from the bed of her first-floor room. About a week after installing the feeder, she excitedly told me about all of the drama unfolding around it. Furious territorial disputes were being waged. An errant woodpecker had taken to the feeder, which prompted her to laugh and state that he must have forgotten that he should have been pecking on trees. Love was in the Spring air and a pair of mating cardinals were her favorites. Muriel noticed the things that completely escaped the other residents that flocked out onto the patio next to her feeder every two hours, like clockwork, to smoke cigarettes and complain about the weather. Her outlook on life was full of compassion, empathy, enthusiasm, and curiosity, and not even her cancer could rob her of her grace and dignity. That day I saw the most beautiful smile on her face as she awoke from a comfortable slumber and mumbled something unintelligible to me. I believe she was surprised to see that I had sat next her bed the whole time she was asleep (approximately 45 minutes). Truthfully, I was in the midst of a deep, existential meditation brought on by pondering her condition. It occurred to me that there are moments in life when not even a force as powerful and all-pervasive as time itself can creep in and disturb something magical. We existed together in that room apart from the laws of physics and logic. It was a place that could only be described as sacred if it must be described by something as woefully inadequate as a word. I saw myself in her and her in myself, no separation except that thin, deceptive veil created by illusion born of ignorance and spiritual-blindness. It struck me that what was created there by circumstance was actually a refuge, a sanctuary that made far more sense than the madness and randomness going on outside in the world. An innately natural process was unfolding, albeit one that was heart-wrenching and that would ultimately rob me of the companionship of my friend. As I squeezed her hand and said goodbye, I told her that we would see each other again. We both knew that it was not true. I might see her, but by that time (within the next day or two) she would have lost all consciousness and one of the true earthly treasures I had ever encountered would be passing on into the Great Unknown. It sounds odd to say that I loved her–after all, she was a patient. But that’s the beautiful thing about hospice. When I worked in mental health, there were very strict boundaries you did not cross, and for a good reason. There you were dealing with clients from an inherent position of power, helping them face problems brought on by mental illness or their inability to cope with events beyond their control. With Muriel, there was no reason to keep up my defenses. She was the most kind, non-pathological being that I have had the pleasure to have encountered. If anything, I would hope to have not negatively affected her in any way. But I know that’s not possible, she wouldn’t stand for it. And so my eyes are a little watery tonight (I’m not a crier) as I think about the unlikeliest duo that ever shared some wonderful and interesting late Friday afternoons helping one another to figure out how to deal with whatever comes down the pike. Here’s to Muriel, my true friend.

Back From the Dead…

It’s been a while since I’ve posted, and there is a reason for that. I am terrible at sticking with things once I start them. I am a serial un-finisher. If I had followed through on all the projects I began I would have to live five times in order to complete them. So I’m rededicating myself to this particular blog because, on the whole, I believe it is here that I actually have something to say. I am a social worker through and through. This can, at times, be difficult to fully embrace. I wonder why I seem to lack empathy in certain situations that would kill other people emotionally. I get burnt out and find myself rushing through my day. I shut myself off to the present moment and allow my mind to wander on to the next thing I have to do before I even finish what I’m doing. I count productivity rather than quality when I should be paying attention to both. I don’t give myself completely to my work when I am blessed to be in a unique position in which I can make an enormous difference on a daily basis. In other words, I can be one selfish motherfucker.

When I’m not creating and sharing my soul suffers. I become wrapped up in my rigid routines and get resentful at anyone or anything that threatens to derail them. I become disgusted with myself while harboring the unwillingness to change. I miss out on life because I focus only on myself. It may seem that I am wallowing in self pity, but I can assure you that I am not. I don’t expect anyone to fix anything for me. I have learned from ample experience that I can only do that myself. Feeling lost and isolated and knowing that you’re only doing it to yourself is a bad headspace. I’ve gotten to the point of mental and spiritual exhaustion and depletion. I need a recharge. I need to write and, in order to do so, I need to be actively engaging with the world. This post might be a bunch of bullshit babble, but I just had to get something down in order to start. Time to get to work.



Wisdom Lost: The Plight of Our Elderly

There’s a story that needs to be told. It’s the story of what’s happening with our culture’s elderly, and I feel (at least somewhat) qualified to tell it. It is, in its entirety, beyond the scope of a single blog post and may hopefully someday come to fruition as a published book. This is my attempt to flesh out a few of the many aspects of this tale.

My initial plan was a comparison of the way that the wisdom of the elderly is received (or not) across several different cultures. Everyday I see older Americans that are essentially “warehoused” in long term care facilities and treated, essentially, as burdens on a society where an individual’s inherent worth is directly measured by the ability to actively contribute to the capitalist structure. The collective wisdom amassed by this population from having considerably more life experience and, as a result, sage advice on life in general, is largely ignored as it simply does not fit into the scheme of our social structure.

I have personally benefitted from much advice of this type as I am fortunate enough to be in a professional position to do so. I regularly meet couples that have been married for 50-60 or more years and have shared anecdotes that have helped my own relationship with my wife. I have sat with a wide spectrum of people from very diverse backgrounds and have found something valuable in all of these experiences. The unfortunate truth is that most people, unless they have regular contact with an elderly and revered family member, never get the opportunity to hear such stories. There is no fixed dollar amount on the wisdom of the elderly and it therefore too often is lost.

While we as a society can surely benefit from such wisdom, there is a flip side. My patients light up when they find that someone takes a genuine interest in what they have to say. They sense that they are important in a way on which they may have long since given up. My interest provides them with an outlet to share their story and, in doing so, give a voice to their own personal narrative that may help them come to peace with the lives they have lived. Knowing that they still have something of value to offer at least one person can be the fuel that ignites a meaningful relationship at a time when their spirits are at their lowest.

I understand that this post barely scratches the surface as to what I would like to convey regarding our elderly population, but I feel it is a good start. Until next time.



The Last Breath: A Healing Moment

I watched a man take his dying breaths today. It’s not the first time and will not be the last, but each instance comes with its own unique circumstances in addition to the underlying elements that seem common to most deaths I witness firsthand. In this case my agency was able to make the dying man’s last wish come true–he passed away at home, in his own bed, without being over-medicated, and surrounded by family and loved ones. His wife of 69 years curled up next to him in bed as his last breath slipped away into the ether. I could not imagine her pain. I am only 40 years old and will celebrate my 5th wedding anniversary later this year. Their daughter fears, as do I, what will happen to his wife now that he is gone and she is in very poor health herself. The man’s wife had reportedly had what her niece called the “romantic notion” that she would die alongside her husband at the same time. It did not happen that way.

His family initially presented us with many difficulties, not the least of which was verbal aggression at what they perceived was a misrepresentation of exactly what hospice services entail. It was a classic case of grief and extraordinarily powerful emotions influencing what they heard as opposed to what was said by our staff. This is not unusual as the information is presented at a time when split-second decisions of astounding magnitude must be agreed upon by several family members often harboring problematic dynamics amongst themselves that are exacerbated by the stress of a loved one’s illness.

This is where I really earn my salary and prove my value to our organization. For several reasons, some of which I suspect I understand and some that I do not, I seem to be calmest amongst the chaos and highly-charged atmosphere such situations pose. In those times the largest fact in my life is that I was born to do this. There is no greater satisfaction for me than intervening with an upset family utilizing a mixture of education, empathy, and mediation to bring them to an understanding that we are all on the same page with the same goal, that being to provide the utmost in comfort measures and pain management to their loved one. I am good at this because the families can see my sincerity and the genuine desire for nothing more than to bring them relief in their toughest times. I believe that the alleviation of another’s suffering is the noblest cause there is and that I am privileged, as a member of the helping professions, to be an instrument of such healing.

It is for this precise reason that I am able to perform my job without succumbing to the depression that most people assume I would experience in such an intense position. The plain fact is that suffering exists in this world and that sometimes, in the face of such pain, the best thing you can do is to be its unflinching witness. Never underestimate the power of your sincerity and your presence. They are some of the greatest things you can offer. Until next time.



Addiction: A Whack-A-Mole Proposition

I change. I know that sounds pretty vague and elementary, but it’s the truth. The problem is that I don’t always change for the better, or into something I have not previously been. I guess you could use other words–like morph, or cycle–but the reality is that reality is not static. Sometimes things that seem like progress are actually growth and sometimes they are the re-manifestation of some earlier incarnation that was not necessarily the goal or desirable outcome.

It is common knowledge in the drug/alcohol recovery community that addictions are swapped for other addictions with amazing rapidity. The nature of my addiction is that I unconsciously gravitate toward those things that allow me to become more fully engaged with myself and myself alone. In this state, other people become incidental to my immediate goals. It can be shameful to admit, but insight and an admission of my awareness are the proverbial first steps toward changing the things I have come to loathe in myself. I have very recently realized that I am currently mired in such a cycle.

Addiction is misunderstood and deceptive. What is usually touted as an addiction is actually the addicted person’s current object of obsession. Rather than saying that someone is “addicted to alcohol,” it is more correct to term that their addiction is “currently focused on alcohol.” Different people may condemn that statement as either misinformed, incomplete, or flat-out wrong, but I stand behind it. This is why so many people in recovery do the addiction shuffle. There is a principle in physics called “Horror vacui,” commonly stated as “Nature abhors a vacuum.” The removal of the object of someone’s addiction creates such a vacuum that can then easily be filled with any number of other behaviors or substances.

Addiction is a complex and dynamic physical, spiritual, psychological, and emotional phenomenon that is best viewed as an inherent part of a person’s makeup. To reduce it to a mere substance or action is to belittle its true power. Alcohol is merely a liquid that has a certain effect on such people. Cocaine is a powder (or other form…) that stimulates people in a specific way. A slot machine is a bunch of electronic components slapped into a pretty package. The point is that these things are just a few of the stimuli that trigger a biological organism’s addictive tendencies that, when established in an individual, will yield surprisingly predictable results over any significant period of time. The actual addiction is what is termed the disease, condition, phenomenon, or illness rather than the trigger.

When I first came to 12 step recovery I noticed that recovering alcoholics can consume a prodigious amount of sugar, coffee, and cigarettes, the whole time while sitting in a meeting discussing how they have conquered their alcoholism. This is where what I am saying is controversial–many recovering alcoholics I know firmly separate “alcoholism” from the rest of the addiction spectrum as if it is hard science. Old-timers talk about how only ten percent of drinkers are alcoholics as opposed to the supposed 100% of heroin addicts you would get if you made people inject themselves with heroin on a long-term basis. I disagree with that reasoning as fallacious because it fails to take into account that you can become physically dependent upon a substance without developing an actual addiction to it. What is actually occurring is that old-timers and sticklers in AA, or “pure alcoholics,” still retain some of the residual fear from AA’s pioneers that allowing addicts to discuss their experiences with things such as drugs, shopping, sex, and gambling will threaten AA’s immediate purpose and water down the message in a way that could be harmful to the overall program. This is understandable, but increasingly archaic thinking in a world where there are so many more things to which addicts are drawn than 75 years ago when AA first came on the scene.

Among my friends in recovery I have personal, firsthand knowledge that I sit in AA meetings with people that are or have, during their abstinence from alcohol, been actively addicted to one or more of the following: illicit drugs (heroin, cocaine, marijuana, crystal meth…); legal drugs (caffeine, nicotine, Benadryl); sex; gambling; shopping; the internet; exercise; food; starving themselves; television; tattoos; piercings; and, adrenaline (extreme activities like skydiving, racing, motorcycles…). The common thread is that there is a key process, or innate force, that drives each of us to seek out such things. Addiction is the individual’s constant, restless search for something that will facilitate an in-the-moment euphoria, effectively (but temporarily) nullifying the individual’s ability to experience his/her uncontrollable but all powerful negative reality (self-hatred, self-loathing, shame, fear, anxiety, depression, suicidal thoughts…). Drugs and alcohol are mere facilitators of that process. When we discuss powerlessness over alcohol, we are really professing an inability to control our insatiable compulsion to escape ourselves.

Until these things are widely disseminated and are understood on a societal level, addicts will continue to be enabled by friends and family and can even be harmed by those in the recovery community that are intensely protective of their own brand of recovery. I am an addict. I run 40 miles per week. I meditate. I buy too many things. I drink more than my share of coffee. I listen to loud, aggressive music and I drive fast. I do these things because I enjoy them and because, in the scheme of things, they are the more desirable and less harmful alternatives to the drugs and alcohol from which I have been abstinent for over 16 years.

There is not enough time or space to delve into the spiritual aspects of recovery in this post, but I do not want to leave any reader with the impression that it does not exist or is some kind of myth. I will address it in another post in the near future as I feel it only correct and responsible to do so. My main point is that, in addition to the role of spiritual progress in combating addiction, sometimes we addicts just need to find the things that we can live with as viable alternatives to those that helped us create so much destruction in our lives and the lives of others. Until next time.



Your Patients Deserve Your Humanity

I was recently assigned to a hospice patient that had been seeing another social worker, but hadn’t been having much of a connection. When the team decided that he might open up more to another man, I was the obvious choice. While his stepson was very much involved and visited the long term care facility every day, it is often difficult for a patient to confide in someone so close and emotionally invested. I agreed that it was a good idea and put the man on my schedule.

Shortly after, I made my first visit and was warmly greeted by both patient and family. The man had led a fascinating life and spoke about his past experiences with a cheer slightly incongruent with his current physical condition and prognosis. I found his attitude to be a breath of fresh air in a field where encounters gravitate toward the negative more often than not. At some point during our discussion I asked a seemingly innocent question about how his day had been going so far. To my surprise, he responded that he had slept late, but wished that he hadn’t woken up at all. He delivered this tidbit in a rather matter-of-fact, decidedly drama-free manner. Throughout the rest of our time together he reiterated in several different ways that he was essentially waiting impatiently for the end and that it could not come soon enough. I was baffled.

At our next team meeting his nurse, aide, chaplain, and previous social worker all reported that they had had the exact same experience with this patient and that they had simply not known how to respond. The man’s behavior and statements were a definite source of discomfort for all parties involved. I met with him three more times with the exact same results. I racked my brain for ways to bypass his defensiveness in order to find out what was going on beneath the surface, refusing to accept his bravado. Only today did I receive a glimpse of the explanation for which I had been seeking.

As I sat down across from him at the dining room table, he began our conversation with a point-blank question: “When this all starts to happen, how aware of the process will I be?” This admittedly took me off guard as I am very conscious of the fact that anything I say could easily be misconstrued as medical advice. It is for this reason that I always preface my responses in such situations with a reminder that I am a social worker and that such inquiries are better directed toward the nurse or doctor. Being exceedingly pragmatic, the man explained that, while he understood this, he would like any information that I could provide him. He went on to explain that almost every medical professional by whom he had been treated had danced around the question and had failed to allay his fears. I sensed an opportunity.

I began by addressing the reason the answer to his question was important to him. It seems that one of his doctors had explained in detail how he would eventually bleed to death, but that there was no telling when this might happen. This left the patient literally sitting on a time bomb (his tumor) that would one day detonate with no warning. At that moment I saw this man, whom I and so many of my colleagues had insisted was unfazed by his impending death, drop his tough exterior and reveal his fear and anxiety regarding the inevitable deterioration of his condition. It made perfect sense that he would have many questions for which he feared there would be no answers. Would the process be painful? Would he know he was dying? Would he lose consciousness, or could it just happen in his sleep? I then understood that there were larger forces at work that were contributing to his suffering rather than alleviating it.

His doctors had been noncommittal in their answers because they were uncomfortable that they could not, with much accuracy, provide him with a sufficient explanation. The one doctor that did take time to explain what would physically occur skirted the topic of how this would affect the patient on a psychological and emotional level. The man had given up on receiving any satisfactory or comforting information and had decided to embrace his anxiety as the undesirable but unavoidable response to a medical community that had neglected his emotional comfort as a result of preserving its own.

Too often we avoid our own discomfort at the expense of our clients/patients. It is the ability to live in that uncomfortable space while maintaining a clear desire to address a patient’s needs that will determine our effectiveness and competence as practitioners. In this case it only took four visits to get to a place where the cathartic process began to appear in the distance, if only as a faint light at the end of the tunnel. He and I both received a bit of hope born from the fact that we had dropped some level of pretense and were having a dialogue that he had thus far been denied. What comes in the future remains to be seen, but the significance of these circumstances was not lost on me. My eyes have been opened to the grave consequences that can result from well-meaning professionals avoiding difficult discussions. I am confident that this will inform my practice and benefit many future patients. Until next time.



Hospice Series (Part Three): Hospice in the Home

The original idea of hospice was to help patients stay at home and receive comfort care and pain management without having to go to a facility. Although services have since branched out to include care in several different settings, many families (understandably) prefer to have their loved ones stay in the home as long as possible and, preferably, until end of life. This requires a team of professionals working together in order to deliver optimal services under conditions that are often less than ideal.

First, private residences are not equipped to handle specific medical situations that would otherwise be routinely handled in a hospital or nursing facility. As a result, hospice agencies typically receive more after-hours and weekend calls to respond to the needs of home patients. In addition, these families are often tasked with doing most of the “heavy lifting,” such as providing bathing, bathroom needs, and cleaning up their loved one following an accident. This can quickly take a toll on all family members directly involved.

Secondly, special equipment such as hospital beds and oxygen concentrators must also be placed in the home to meet a patient’s particular needs. Most houses only have room for this equipment in the living room, thus effectively making the patient’s illness the center of the family’s emotional and physical existence. The ubiquitous presence of hospital beds, medication trays, and nebulizers (to name a few) serves as a constant reminder of the grave changes taking place in the family dynamics as well as the impending loss that will inevitably come.

Next, such families will usually be in need of more extensive hospice care including a social worker to assist with family issues that, while stretching back far into the past, are magnified by the present-day stressors involved in having a terminally ill loved one. The more family members involved typically means more opportunities for disagreements, hurt feelings, and decisional conflicts that arise from fear and guilt regarding the patient’s care. It is not uncommon in such situations for different family members to privately request that information from the hospice team be directly provided to them and them alone as they view themselves as the most responsible party. This can lead to rifts between the hospice workers and other family members as it is best practice to have everyone on the same page and to build as much trust and rapport with the entire family rather than allow one member to undermine the others.

Lastly, many times family members will want to keep the patient at home even when all indicators point to facility placement being the best option. This is born from guilt which clouds the family’s ability to rationally assess what is best for their loved one. In such cases a social worker will usually work extensively with the family to ready them for such a decision. It is a grueling process that can lead to much self-doubt and many hurt feelings no matter how well it is handled.

In closing, it is important to remember that it is entirely possible for hospice services in the home to go well, but the aforementioned pitfalls must be addressed in order to adequately prepare such families for potential complications. In the end, such education is the most responsible course of action and will be most effective when dealt with upfront rather than waiting until potential emergencies arise. Until next time.