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Hospice Story #8: What the Dying Want to Talk About
She was completely unconvinced that a man could help her. She was completely unconvinced that talking about her upcoming death would be helpful at all. In spite of those misgivings, she let me into her apartment in what became a weekly ritual for us both for the last few months of her life.
She was well into her nineties. She had been a farm wife, raised upwards of nine or ten children. She knew about death. She grew up on a farm during a time when the farmers in the area only came into the little city on the bay once a month by wagon. Children often stayed with relatives, or with friends in town, during the winter months, because the amount of snow made travel in and out of town on a daily basis for school absolutely impossible (Soon after we moved into our one hundred and thirty year old home we met an elderly woman who had spent winters in our house with her aunt when she was a girl.)
My patient was a devoutly and authentically religious woman who lived by The Christ’s admonition that one is to love one’s neighbor and not judge. She believed good people go to heaven, that Jesus would let them in based less on their stated beliefs than on their actions.
She paid less than one hundred dollars a month rent in her rent-subsidized apartment. Rent subsidies are calculated to be one third of one’s available monthly income after essential expenditures. She refused to let me apply for food stamps for her. She said she would prefer those who needed it more than she did receive such benefits. She was really quite satisfied with what she had.
She had regular visits from most of her children, especially her numerous daughters. Again, in this family, it fell to the women in the family to do the hands-on care, while the men, if they were able to visit much at all, looked after other aspects of end-of-life planning. Many in this family had grown distant in many ways from farm life, but it seemed to me to define important aspects of how they approached life: good humor, hard work, matter-of-fact, accepting of the inevitable, some levels of intractable conflict, reverent toward whatever deserved reverence. To some it was a Christian God… to others it was nature and art.
Early in my association, and through a routine interview to gather family information, she disclosed that one of her sons had committed suicide almost forty years prior to our meeting. Not long after she first told me about that death she also told me she hadn’t talked about it with anyone at all since very soon after it happened. It was not allowed in her family. That was the way it was done. We talked about her son’s suicide every week until the week before she died, her head in her daughter’s lap. She was full of kisses in those days.
She thanked me over and over.
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Hospice Story #9
He was at the tail end of a long battle with prostrate cancer. He lived in a small apartment on the bottom floor of an old house not unlike many homes in any of the small communities here. The community he lived in was at the eastern end of a large lake that is an amazing color of green-blue on sunny days.
My partner Susan has a story from her grandfather about this lake: the fastest way from the community perched on the western end of the lake to this community on its eastern edge, in the winter, was to go over the ice. Her grandfather was taking a load of lumber across the ice via horse and sledge. It was a hazy snowy day with little visibility. At one point the horse stopped dead and would go no further, regardless of any of the ways her grandfather tried to get it to move. Her grandfather finally stopped berating the horse, took a short walk and found that there was a huge opening in the ice not far before them. He always ended this story by saying “I kissed that horse right on the mouth”.
But back to the story about the man with prostrate cancer.
He was a first-generation Italian immigrant. His first name floated off one’s tongue in the way only truly Italian names can. He was from a city in north central Italy, and he still had memories of his childhood there, which he was happy to talk about. I had pictures from that town and stories to tell from my travels there and these conversations made him very happy.
He was a constant questioner, and a committed agnostic. He explored issues of afterlife and the spirit with a persistence and will to understand that was almost exhausting. Especially Exhausting to him and at times to anyone whom he trusted with the endless stream of questions and concerns he had about death, about what might happen after he was dead. He was totally put-off by the kinds of, to him, pat answers traditional religious views put forth about these concerns and deep, unanswerable, but demanding, existential dilemmas, though he didn’t eschew, completely, more expansive spiritual, mysterious attempts to understand the nature of the ultimate loss of self that death represents.
Anxiety, at this time in his life, was not his friend, although at some time one got the feeling that it had been a useful motivator to him and pushed him to excel… though it had not been good to him in his relationships with his family. He had been divorced from his only wife. He moved north to be close to his only daughter and their relationship was strained and marked by several failed attempts made for him to live with her so that his care would be more comprehensive and constant and he might feel safer.
In the end he finally agreed to move from his small apartment to a walkout basement room with a bathroom that his daughter had prepared for him. This became the only possibility for him, short of a nursing home, and that idea was an anathema to him. But for a long time, as his body failed in the slow and terrible, almost methodical manner in which prostate cancer robs one of vitality, strength and stamina, his anxiety pushed him around and beat him up. What he had in the past used to relieve with movement, activity and diversion now sat in his gut and head like an extra set of teeth. But something changed for him about a month before he died, and before he was able to finally agree to move to the basement apartment in his daughter’s home
One day I came to his apartment and he was sleeping. It was the middle of the afternoon and he was due to wake from his, now habitual, mid/late morning sleep. One could hardly call it a nap. He generally got up in the earlier morning for a little bit to eat and take his pills, and then took to his bed again. He had instructed us all to wake him when we arrived in the late morning and so I did, but when he awoke that day, it soon became obvious that he was not really awake.
His eyes, open wide, recognized me but looked right through me. And then he began to speak about the room around him, a rather dim and disheveled, lived-in sick room that he now began to describe in glowing terms. He used words like ‘perfect’. This was a “perfect” place. To him, in those moments, everything had a kind of light around it.
He wanted to know what had happened. He said “this is my room, but it is so new, it is completely changed, completely perfect”. He talked in this way for ten minutes or more. Then the mailman came up the steps and into the house as he had been doing for a good number of months. He too became a part of this vision. He was also perfect, somehow. He was the perfect mail man. My patient asked the mailman how he became so perfect, so glowingly clean. He asked how everything had been placed in the absolutely right place. This place, the mailman and I, were almost unrecognizable… but he clearly loved being in the presence of this changed and pristine environment.
Intuitively I knew not to disrupt this reverie. Somehow the mailman also did not question anything my patient was saying… he delivered the mail, chatted for a while, was extremely pleasant, even affectionate, and then left. My patient went on for a few more minutes, with that same rather glazed look. But then it started to fade. His eyes sagged some, lost that brightness, a child-like appreciation of discovery. He asked several times what was happening. He said “It’s leaving… it’s going away now. Where was I? What happened, Bob?” I tried my best to stay with him through this, though I was completely unsure about what I had been made a part of, and what he was so clearly less than happy about being delivered from.
But at one point he quite literally shook the experience off. He sat silently for a while. He asked me what had just happened. When I was unable to answer definitively, he insisted that I knew, that I must know, that I had something to do with it, with the beautiful experience of clarity… of “everything being exactly where it belongs”. He continued to insist that I knew more than I was willing to tell him about what had happened that day until he died, in the hospital, a month and some weeks later. In fact, he brought it up the last time he spoke with me.
Something did happen, but it remains in the realm of mystery… although it had an incredibly calming effect on him. His anticipatory, anxiety related, dysphoria abated. He became calmer and more accepting. He laughed more. He took himself less seriously. He attributed this change to the experience he had that day with the mailman and I. And neither he or I could understand exactly what it was that occurred. He, insisting that I knew... and I, gently proposing that he knew more about it than I ever could.
He was bed bound, and unresponsive, for many days prior to his death. Not restless, but I supposed not finding it easy to take that last breath either. His daughter found it necessary to move him into the hospital for what was thought would be his last day or two. That stretched into more than a week. She sat by his bedside for the duration. He died when she was out of the room taking a short break.
She attributed his dying when she was gone for that short time to the fact that he had never wanted to make her responsible for caring for him or for the pain it might cause her to see him die. I have no reason to believe otherwise.
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Hospice Story 10: The Nurses Strike
For two years of the eleven I worked for the hospice organization there was nurse’s strike in the hospital and its affiliated agencies, including the hospice organization I worked for. It apparently became the longest nurses’ strike in the country and as far as I know, still holds that record.
It was the third attempt by the nurses to unionize and they had the majority of the votes this time. They would be represented by the Teamsters.
Now, I have a number of reservations about this kind of unionization. Number one being the fact that I am not and was never convinced the Teamsters were the right choice to represent healthcare workers. Healthcare systems seem to me to fall significantly outside of their specialty or niche. But the nurses voted for the union by a sizeable majority, not once, but two or three times and in spite of some on-going, heavy-handed attempts by the administration to break the move to unionize in the healthcare system.
One method was to dismiss one CEO and find another from another area of the state whose specialty was breaking unions. Apparently, this was a well-known fact to everyone but those who allowed themselves to be maneuvered into staunch anti-union positions through the usual kind of fear tactics that are common and effectively used and have been since the labor movement consisted of groups of grass roots workers who had more to complain about than the fact that they couldn’t make more than 40 thousand dollars a year and had to work long shifts. This is not to say the nurses in the system did not have legitimate complaints. Every single one of the lower tier workers, especially the lower tier workers, in U.S. healthcare have a myriad of legitimate complaints even beyond the fact that those who do the most face-to-face patient care are paid less than a tenth of the highest wage earners in any system.
I have a lot of reservations, as I have said, about what some modern unionization is about and what it hopes to accomplish. I am curious about why union leadership would go into a hospital and attempt to organize a group of the most well-remunerated lower tier employees, while ignoring other groups that do much of the most literally back-breaking, dirty and dangerous patient care work for, at that time, under ten dollars an hour. Surely there are huge segments of the working population that deserve and need organized representation more than a group of professionals who start a job at between twenty and thirty dollars an hour.
Whatever my reservations were, however, I was willing to support whatever the majority of the nurses wished for. The result of the vote, to me, was what counted. Apparently, this was not the case elsewhere in the organization. However, any show of my support and loyalty, as a hospice family counselor and social worker, could not include refusal to work. I could not have explained that to the dying and bereaved people I was working with, nor would my budget sustain the loss of income, and the probability of my being hired in a comparable position in our little community after being fired for refusing to work was beyond low.
There were to be more elections due to the stubborn and recalcitrant nature of the administration and its refusal to honor the outcome of the pro-union elections, until, over the two-year period, the number of striking and pro union nurses were gradually replaced by nurses who would vote against the union, and the National Labor Relations Board was changed enough politically to be an arm of the bosses and no friend to labor. My email to the CEO about the sanctity of democratic elections was politely responded to with an insistence that he was liable to look after the welfare of the minority of the nurses who voted not to unionize. One wonders if his commitment to the wishes and wellbeing of other minorities was as strong.
I take strikes in stride and with good humor. I have walked picket lines, been part of organizing campaigns, and worked briefly as a scab laborer in a menswear store during my college years (I was very poor and wore horrendously out of style and ill-fitting clothes during my tenure there).
I grew up in Detroit. I know about unions. The story of Jimmy Hoffa, and Teamster’s alleged corrupt and criminal connections are part of my era’s folklore. So, when the days leading up to the beginning of the strike were marked by supervisors openly weeping in fear for their children’s safety at the in-house childcare center, and my being publicly reprimanded for joking about the administration’s exaggeration of the dangers the striking nurses represented, I was taken aback, as they say.
The administrators had done their job well, if their job was to scare the bejeezus out of their middle managers and, hence, the rather timid and passive natures of the nurses who would not strike. This is a quiet town with quiet secrets. Once a Greenpeace ship came into town and the local peace and justice greenies in town asked that no action be taken that might upset anyone. Go figure.
I remember many entry doors to the hospital were locked during the first weeks of the strike. We were all required to enter one common entry. A security company was brought in. It was made up almost exclusively of African Americans, who were posted at various doors and around the grounds. This, in a community in which it has never been uncommon for as long as I have lived here for groups of people to publicly disparage “those people in Detroit”. I used to cringe at the frequency of the times I heard the word Nigger used in public and stopped going to many public social functions because I would become so outraged at the bizarre pre-occupation and repetitive nature of the overt and coded racism that was expressed.
One acquaintance of mine was a man who worked as a maintenance man in the hospital. One day soon after this legion of dark-skinned security workers arrived, he talked animatedly to me one morning about “the nigger” who had tried to stop him from going in a particular door. I was silent and he went on for a while in the same vein until he said “I’m not prejudiced or anything but…" and then I interrupted and said calmly “Oh yes you are” and walked away. It was not the only time I heard this kind of comment from an employee.
Meanwhile, I had struck up a friendly repartee with one of the new security guards I passed several times during the day as I would walk by his station. I asked him one day very soon after the incident with the maintenance man whether people were treating him well. He said, “No sir, as a matter of fact they aren’t”. I apologized and walked on and made it a point to continue to speak with him, hoping for a chance to go on at greater length about how he had been mistreated, to support him and gather information. Unfortunately, very suddenly and not long after that, there seemed to be some unannounced, unexplained, change in the security service used… all the African American faces disappeared one day and they were replaced by a cadre of very white faces.
One learned not to speak positively about the strike, about the nurses who joined and eventually left the hospital. Disparaging remarks, most usually of the passive variety, but not unusually of the aggressive kind, that insisted that the nurses who were now gone were “the trouble makers”, were legion.
One wonders how such a stream of events affects the living and dying, the tragedy and miracles that occur regularly in such settings and under the roofs of such caregiving institutions. There are many stories from that time related to the strike and how it impacted patient care. I can not tell them here, now. But I can assure you that such a system under such duress is hardly beneficent, usually loses any level of benevolence it pretends too. I was forced for the duration of the strike to support and assist people who, along with the necessity of learning to manage their individual end of life scenarios, or their loved ones', were shocked and dismayed at the treatment they received, their trust betrayed, their loved ones made to suffer even more, while this strike was going on, and it wasn’t the fault of the striking nurses, many who I knew to be the most competent clinicians in the building.
Don’t let anyone tell you different. If they try, they are liars.
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