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5. THE HOUSE WAS HUGE... IT WAS A DIFFICULT PLACE TO VISIT
The patient was old and alone, infirm with significant dementia. He had hired nurses and companions through a local agency. He had a son who was a lawyer in a small office in town and a daughter who rarely visited who lived in another midwestern state.
On one wall there were hung a large number of old yellowed pictures, many that included shots taken of his attractive, deceased, wife near the family cottage on an island that had been taken over by the government for a public park. When he was able to have a conversation of any length about it, it was clear he was still angry about that.
Pictures from his youth showed that he had once been movie-star handsome, kind of a Tyrone Power with a bit of Rudolph Valentino thrown in for even better measure. Now his false teeth perpetually slipped as he talked and while he insisted on eating solid food against the doctor’s orders. He coughed and choked through each little bowl of applesauce. He was in our hospice program for longer than usual, but any subsequent assessment always determined him to be within the rather arbitrarily set hospice Medicare and private insurance guideline that he could be expected to die within six months.
It was often hard to know what the hospice staff was able to add to his life. He had a strong attachment to one or two of his hired companions, but that seemed more to be a matter of whom he tolerated as opposed to who he was attached to and was only reported by the caregivers. He never really demonstrated or talked about it. He apparently got along best with a male nurse who was consistently virtually expressionless and appeared to live in a self-imposed world of such a depth of poverty of mood, expression, or speech that it was hard to know what the old man appreciated about him. The fellow had a handshake that was always given in surprise and was so damp and limp it felt like grabbing a head of over-cooked broccoli. But he was reliable, and kind, if only from an absence of strength of emotions.
The house sat across the road from the bay. In the back yard were lush cedar trees and little creeks and pools with masses of watercress. A great blue heron sometimes landed alongside the creeks. When one would comment on the bird he said such a bird once ate all the fish he had planted there. There was a cardinal that came to the feeder by the window in the winter. He typically under-reacted or was completely dismissive when anyone complimented him on the house and the grounds where it sat. The many rooms were musty with under use and filled with antiques. The people who seemed to take the greatest pleasure in them were the hired companions and nurses, most who made less than ten dollars an hour.
None the less, he always thanked me genuinely for my visits, visits which were often quite brief and brought to an abrupt close by his request that he be left alone, or due to some sudden requirement that someone must look after his physical needs, none of which he could do for himself. He died after the onset of a period of increasing, unexplained, pain that was finally brought under control half a day before he took his last breath. He was with a hired companion, not the male nurse, and a hospice nurse when he died.
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6. BREATHING, NOT BREATHING
When I first met him, he lived in an old, rented, mobile home that had not been maintained very well. He was several years older than I was and not automatically trusting of the people who were sent into his home to care for him.
He lived alone and had been married once, briefly. He had a slow and intractable lung disease that he had been living with for a number of years and that had finally progressed to the point that he was unable to work in his trade. He was a stonemason and a carpenter and had a wide variety of other skills in the building trades. He lived on disability payments that were quite low due to the manner in which he, and many in the skilled trades, are paid. He worked in Colorado for most of his career and loved the mountains. When it didn’t create too much sadness and grief, he was able to talk about how much he had enjoyed mountain stream kayaking.
The increasing shortness of breath that came from his lung disease eventually prevented him, by the time I came to know him, from much of any even routine physical exertion. In fact, any movement whatsoever resulted in extreme shortness of breath and tremendous anxiety.
Lung diseases are notorious for an accompanying heightened anxiety would be crippling in itself. If you have ever felt you might drown or suffocate and have experienced the kind of adrenaline push that aids in your efforts to be free of whatever is constraining your breathing, you might understand what people with serious lung disease live with daily, all day long, and sometimes with the smallest amount of exertion. People manage such extremes in anxiety states by refusing to do anything that might push that button or working through it laboriously and refusing to allow it to slow them down, even to their own detriment. There seems to be a range of individualized approaches to the anxiety endemic in lung diseases that runs from one extreme to the other.
One of the tasks I first took on, early in our relationship, was to go out to his mailbox to get his mail. This was a walk of maybe twenty yards. He was able to manage it himself, on good days, only in four bursts. That is, he could walk out to his truck, sit down, catch his breath, walk the remaining distance to the mailbox, rest a bit, and repeat in reverse to get back to his chair. Often two days or more of mail was in the mailbox when I got to it.
As the summer was turning hotter earlier that year, it became clear that his life expectancy would be significantly shortened if he stayed in the mobile home. It was unshaded and stifling, with little exchange of air. I was able, against the odds of long waiting lists and few options, to help get him into a rent-subsidized apartment with air conditioning. He lived for several months more, well into the Autumn, cared for by his brother-in-law and his nieces and nephews who were attentive and loving but inexperienced and, in the case of the nieces and nephews, young and scared.
He was terrified at the thought of having to die in a nursing home but we were never sure if he would be able to die in his apartment due to the increasing disability he displayed in caring for himself. As sweetly dedicated as his family was, they were all working people and/or students with multiple jobs. He was also quite sensitive to the rigors his care demanded of others, and so was hesitant to ask for help.
Although never unrealistic with him about whether we could care for him in his home until he died, (most people cannot afford in-home shift-based custodial care; the vast majority of insurances do not cover it, or are unaffordable and not designed to deliver it when or as long as it is required, and hospice care does not include it) we did assure him we would give it our best shot, if he could help us by accepting the help that was available, and also by not moving around much when alone to decrease the chances that he would fall. He had increasingly become quite unsteady on his feet.
Falls are common enough, and potentially deadly, although they happen routinely in all settings. I recall several situations when a caregiver was hired specifically to decrease the chances of a fall, and the patient fell anyway... while in the same room with the caregiver. I remember one woman who broke her hip and subsequently died in such a scenario.
Toward the end of his life even his four-times-daily, fifteen-minute, breathing treatments became too laborious for him and we worked with everyone involved to schedule someone to be there to help him with their administration. On several occasions he cried with me about his inner quandaries around needing this kind of help. He was not a crier by nature.
One young niece and nephew were angels during this time. During these breathing treatments he had, rather obsessively, as was increasingly his way in all areas of his life, as the disease made breathing the only thing he had enough energy to do, devised a very specific step system that he and whoever helped him had to follow. This included the way medicine bottle caps had to be set aside while the medicine was opened and included sitting across from him as he administered the breathing treatment. This way, one could help him hold up the tubes that were part of the treatment administering mechanism. One would sit across from him, and he would hold hard onto your arms as he inhaled the treatment. There was more physical intimacy in this process than he characteristically, historically, was accustomed to showing. I believe it amounted to a kind of embrace, in a way that he could manage, that was not threatening.
During these treatments his face, ravaged by the disease but still handsome (he changed in ways that reminded me of the differences between the life and death masks of the poet Keats that I saw in the Keats’ house in London. Keats died of TB), would be less than a foot from mine. He looked directly into my eyes and held on almost desperately, affectionately. His niece and nephew and I chided him gently about how much fun it was to be able to let him hold on to us like that. That encouraged him, I think, and he became even more comfortable with it.
He died in his apartment a week or two after that approach to his treatments became necessary, and when he took to his bed and decided he would have no more of them. His family was spent and exhausted. Though they did not regret it.
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7. MAGIC
Her mother’s death had been long and gruesome. One of those hospice deaths one rarely hears about. The blood supply to her lower extremities had been occluded by tumor mass. This results in part of the body dying while the rest stays alive. Many of the symptoms were only managed through sedation due to the requirements that hospice care refrain from curative treatments. Also, the per-diem hospice allowance from Medicare is simply not enough to allow routine surgical remedies for problems such as these, no matter how related to symptom management (as opposed to life prolongation) they might be; not to mention the fact that most people in hospice have specifically chosen not to return to the hospital for aggressive curative treatments, nor in many cases could they survive them. This is at once the strength in a hospice approach and, in cases like this one, its great weakness. These scenarios are not uncommon. Few people fit neatly into such bureaucratically invented categories.
I had most of my interaction with her after her mother had died. She and her family, a father and a brother and, prior to her death, her mother, lived in a modest home cluttered with signs of the attachments of family history, collections and photographs: a rich tapestry of the story of this family’s life together. She had a variety of physical symptoms herself, of the type that seem to be epidemic now: nonspecific pain, an unrelenting affectual flattening and mood disturbance that was present to a certain degree prior to her mother’s prolonged dying but exacerbated and even more fixed after the death.
While I have been surprised and gratified to witness amazing care given by husbands, sons and brothers once the decision is made not to pursue further curative treatment (often men require more specific instruction, not being culturally imbued with the expectation of caregiving, but once “taught” take to the tasks in very detailed and careful ways that often surpass care given by women who are forced into the role and resent it), the process of the hands-on custodial care is still generally assumed to be the females’. In this family that meant the daughter was to be responsible for the major portion of caring for her dying mother. Hard enough in any case, exponentially terrifying in a case like her mother’s. And these were the details of her mother’s death that she tried to work though with me, the powerful, and ineluctable, portion of the trauma of her grief: the pain she witnessed, the smells, and the witness to her mother’s often unrelieved agony. All the ‘whys’. All the self-flagellating guilt related to her inability to relieve, by some action, prayer or other magic, the excruciating suffering that was a part of her mother’s (who she considered to be her best friend) last weeks on the planet.
After her mother died, I was able to be with her on a bi-weekly basis for quite some time. I hoped to travel with her a bit through the rugged terrain of a grief complicated by the traumatic nature of her mother’s death.
Marginally “marketable” in the culture in the first place, she was unable to hold a job. She had no way to pay for other counseling. She was responsive and insightful and worked hard. But smiling and/or crying didn’t seem to come at all. No amount of hard work and understanding of her inner processes could shorten a necessarily long grieving period that included nightmares, spontaneous visualizations, and vivid olfactory remembrances, as well as the terrifically difficult rage she felt toward her other family members for having made her be the one who was in charge of the care… and then there was the guilt about that rage.
As she had known of me through a string of mutual acquaintances (not unusual in a small-town, gossip laden, rural area such as this one) she brought up the fact that she had heard that I read tarot cards. She brought this up several times and we discussed the possibility that I would bring the cards with me on one of my visits, for fun, and also because cards had been read for her in the past and she thought it might be helpful to her. I have, as well, found certain methods of divination to be quite helpful in some situations while counseling and coaching people.
A bit out of the ordinary perhaps, but then, Carl Jung himself was a proponent of the I-Ching, a Chinese method of divination, and wrote his treatise on Synchronicity based on how he found such practices to be helpful in the exploration of inner resources, relief, and direction. I had especially found Tarot cards to be helpful in working with extremely authority-resistant adolescents who viewed any input or interaction with an adult as suspect: somehow information coming to them through the cards was more readily digested and accepted than anything coming from or through direct interaction with an adult. And while there can be a mysterious aspect to the revelations made available through such methods of divination, I doubt that it is any more or less mysterious than what is made available to one through one’s dreams. In fact, I view such card readings as conversations with the unconscious and eminently helpful to most people who are open to them. Not so much magic in the cards, or from whoever is enlisted as reader, but in what the person in question brings to the reading; their willingness to open doors to what may not be known consciously to them. Magic indeed. Of a very earthly, human nature.
Our visits dwindled over time. Over quite a long time, actually. And the last time I saw her, a year or two after our last visit together, she was smiling more broadly than I thought she was capable of. She was pregnant and married. She reported decent relations with her family as well.
Not long after, I cared for the father-in-law of her brother and made better acquaintance with her brother as well. He reported that he had been married the summer after his mothers’ death (this had been something the mother had hoped to live to see, although it was not to be) and that a huge bouquet of flowers was placed in an otherwise empty chair in the front row on the groom’s side with the rest of the family.
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Postscript note to Hospice Story 7:
One day while I was working with this young woman, the lead chaplain in the hospital system our hospice was affiliated with approached me and gingerly asked me about my tarot readings. Thinking he was merely curious I offered to show him my cards. He tentatively asked me to bring them to his office and later I gave him a short lesson in the tarot and Jung’s theories around the usefulness of systems of divination. It wasn’t until later that I realized his inquiry to be a result of fearfulness and ignorance expressed by various Christians on the staff who were generally in the anti-Harry Potter crowd and could only see the dark arts (as they determine them to be) in such readings. He was particularly interested in the cards that depict Death (usually, in tarot, indicating transformations) and The Devil (which indicates various forms of negative addiction, or release from the same). The deck I showed him, one of several I own and one of my favorites, had changed those cards respectively into Transformation and Materialism. I think this was a tough stretch for this fellow anyway.
One of my earliest memories of this guy, a generally good man, was when he officiated during a short memorial observation immediately after one of the popular supervisors in the hospital system died very suddenly. The chaplain conducted a group prayer that included strong references to and use of the Christian divination and spellcasting involved in prayer: praying to a father god through his half-god, half human son and a “holy ghost” to make things occur magically or through the will of the Divine …
This was very early in my time with that organization, and I remember being somewhat astonished that there would be such a prayer. Up until then I had never been employed by an organization in which any kind of prayer was expected or employed. And looking up during the prayer I recognized, among the hundred plus people present, at least a half dozen people I knew who were at most agnostic, and several who were Jewish.
My refusals to pray at work became quite an issue of gossip and behind-the-back complaint, and I am sure my use of the tarot only inflamed it more. I remember during one little meeting to review the circumstances and process of a difficult death with the employees most involved in it, the chaplain, another chaplain, asked, at the end, if he could “have prayer” with us. I said politely that I’d prefer he didn’t and that I would leave if others wanted to pray… although if he would like to sing and dance that would be okay.
Meant as a gentle joke, I’m afraid refusing prayers was an astonishment and a puzzle to him and there was nary a smile in the room. Interesting, that a concept of the Divine would exclude humorous invocations to it. Another reason I reject Christianity as it is practiced: bad and/or absent jokes.
Oh, and here’s another story along this line: I once got an email at my work address, among far too many of this kind over the hospital email system, that requested urgent prayers for some suffering soul or another. Usually these included details about how the particular person had no health care insurance and needed various levels of treatment that were completely beyond affordable.
Now let me make this clear: I have no problem with praying in situations like this, I routinely joined patients and their families in prayer when they requested it, but these entreaties came regularly from people in the system I knew nothing about and seemed to be ignorant of the fact that every day my day was full of people who were dying under tragic circumstances, with lack of useful levels of insurance coverage, choosing no treatment only because they did not want to be a burden financially to their families etc and so on … or having to move into a three bed nursing home ward to die because they had no money to care for themselves at home and everyone in their family was similarly occupied at various levels of low wage employment just to get by, hoping not to get sick. So... I was losing what little patience I had toward receiving such emails. Besides, I thought it was entirely unprofessional.
I replied with a short, polite, email asking that I not be sent these kinds of emails any longer and briefly discussed the level of suffering that I saw every day as one reason. I received an email back saying that they were not the one who had generated the mass mailing and they didn’t know where it had originated. So, then I sent out a mass mailing over the system requesting, politely and even more briefly, that I be taken off the list of anyone who sends such things out. I received several terse replies and an angry offensive sarcastic one (“You work for Hospice? I feel sorry for your patients!”) At first, I thought it was funny. But really, it wasn’t at all.
So much for my popularity among the magicians of Christianity.
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