Annual Reflections In Depth Perspectives
Now I Lay Me Down To Sleep
Hospice is more about living than dying. It’s about living life to the fullest and being empowered to make choices about what this looks like. A man once confided he’d not been able to have a beer for many years due to chronic illness. He said, “I’d give anything for one.” I told him “today’s your lucky day, get out your checkbook, I can make it happen this afternoon.” His sons were so thrilled they spent hours in the liquor store selecting just the right brew.
A woman wished she could once again ride on the back of her husband’s Harley. She had cancer, causing considerable pain. She refused pain medication, fearing loss of lucidity. Besides, “the doctors told me not to ride.” Now this woman was really independent and stubborn. We talked about her dying, and her living. We talked about the joy and freedom she felt riding. Finally I told her: “I don’t know why you’re following doctor’s orders now; you’ve never done so before in your life. What’s the worst that could happen? You’re going to die anyway.” “Yes!” she exclaimed. I continued: “If it were me, I’d take the pain medicine ASAP and climb on while you still can and the weather’s nice.” “Yes! What was I thinking?”
Another man, with lung cancer, really wanted to die: “I can’t understand why I’m still living. And they’ve got me wearing this damned oxygen which hurts my nose and makes it bleed.” “Take it off,” I suggested. You don’t have to have it if you don’t want. And, without oxygen, with any luck at all your organs might deteriorate more quickly and you’ll die sooner. Instantly his oxygen came off. As I got to know him better, I diagnosed him with a depression, and he began an anti-depressant medicine. “Now, I’m so damned happy,” he complained. “Well, you won’t die any faster if you’re depressed than if you’re happy, but it’s up to you. You can be happy or depressed, whatever you want.” “The other thing is I’m always so hungry. I eat everything in sight, and then I can’t wait to order the next meal.” This after he said he wanted to quit eating and wondered if he’d die sooner (part of what caused me to explore his mood state). I shared he would, but he might get hungry if his process hadn’t progressed to the point of diminishing his appetite. So he’d stopped eating for a day. Then he sheepishly admitted he’d cheated and had a few bites, plus eaten all the candy he could get his hands on. Anyway, I told him: “Good news. There’s no meat on your legs, and you’re getting weaker, so you’re getting your wish to die.” “But my stomach’s getting bigger by the minute. I’m getting fat.” “Naw, that’s just fluid build up because you’re cancer’s spread to your liver. You’re in luck. Won’t be long now.” He was thrilled.
Another woman had congestive heart failure. She was depressed, and refusing food and medication. Now, patients have a right to do this. But she also had a dementia resulting from her heart condition. Anyway, when I first met her she had her head in a trashcan, throwing up. “It’s because my stomach is so empty,” she said, “but, I don’t want to eat; I want to die.” “So this is how you want to die, with your head in a trash can throwing up?” “No,” she argued back. “Well, tell me what you like to eat.” “I like fish and chips, and bacon. I love bacon. But it’s so bad for you.” “But I thought you wanted to die. Here’s the thing. I don’t think you can eat too much bacon. There’s lots of salt in it, not to mention the fat. And that’s going to really be hard on your heart. With any luck, your tummy will get full, you’ll stop throwing up, you’ll enjoy your bacon, and you’ll die sooner. And then don’t forget the fish and chips.” “Well yes, I suppose they’re bad for you too aren’t they,” she chuckled.
Death is a process more than an event. One dies over time. I’ve come to believe that time is a human invention, and does not apply when one begins to pass away. And so even those who appear to die quite suddenly from a human perspective, I believe have all the time they need. The other thing I’ve come to understand is that how one passes away is perfect. Often in retrospect those left behind begin to see the reasoning behind their loved one’s particular time.
There are signs that indicate the process is underway. Physically, dying is similar to when a large factory closes: the least essential parts are the first to be shut down. So it is with the body.
One begins to lose their appetite as their gastrointestinal system slows down and stops working. In the end, one stops eating and drinking altogether. When this happens, hunger and thirst are not experienced in the way we normally think of these. Thirst is experienced more as a dry mouth that can be moistened with a toothette, or a sponge on a stick as I call it. At this point, one is no longer to digest or absorb food and nutrients. Tube feeding is no longer an option, as the same applies. The same is true for IV nutrition or fluids. We know that these add stress to the heart and lungs, and can result in a person drowning in these fluids. The body begins to consume itself, resulting in dramatic weight loss. One becomes very skeletal looking. It’s not uncommon for one’s weight to drop to 60-65 pounds. It takes very little nutrition to sustain life at this point. I’ve seen people subsist for weeks on a few bites of ice cream. Once one stops eating and especially drinking altogether, it starts a time clock. One generally will pass away within a week or so from that point. While one becomes dehydrated, this is actually a comfort measure helping to be more sleepy and less aware of what the body is experiencing.
Also at this point in the process, most people prefer ice cream and other sweets. Ice cream takes very little effort to swallow, has good nutritional value, and most importantly tastes good. According to my unofficial poll, Wendy’s Frosty’s are a favorite. This is especially the case for elderly folks. They’ve lost considerable numbers of taste buds. The elderly have between 12,000 and 15,000 taste buds compared with younger people who have from 75,000 to 85,000. And it’s the sweet ones that remain. So my advice to families is always, “perhaps your mother has reached a point in her life she no longer needs her meat and potatoes—let her have desert first and while you’re at it, pick up some for yourself too and have a picnic in her room.” Once I was helping one of my sweet lady patients eat lunch. She labored with her main course. But you should have seen her eyes light up when they brought desert. I suggested we dispense with what she was eating, and go straight for the ice cream. It was the way to her heart. We spent the rest of the meal talking about the time wasted in life having to eat vegetables before desert. Do yourself a favor before it’s too late—eat desert first, then have seconds if you want.
Generally, towards the very end, one will lose the ability to chew and swallow altogether due to muscle weakness. Aspiration (food and fluids going into the lungs) is common at this point. It’s unavoidable and unpreventable. It can be delayed with thickened liquids and pureed food, but these are stopgap measures only. As a side note, my colleagues all report the foulest smelling food is pureed fish. Try to avoid this if possible. I’ve personally left instructions to be given Reese’s Pieces—chocolate coated, peanut butter candy. My thinking is that this will add protein to my milk shake diet. As a result of aspiration, one generally develops pneumonia.
In the end, this is what many people die from. Mostly, one does not die from their official diagnosis, but from an opportunistic infection such as pneumonia or sepsis (systemic infection). Pneumonia has been labeled “the old person’s friend.” It provides a way for one to leave this earth. And it’s a very peaceful way to pass away. There’s a superb medicine to help one not feel as if they’re drowning or suffocating—morphine. It’s given sublingually, doesn’t need to be swallowed and works fast. It binds the receptor sites on the brain to prevent the feeling of being unable to breathe. It works for pain as well—two benefits for the price of one. I’ve seen patients whose lungs are totally full of fluid, or who’ve no lung function whatsoever from lung disease, not struggle to breathe.
Those keeping a vigil will likely hear a gurgling sound as air passes over the fluid, either in the lungs or deep in the throat. This can be controlled somewhat by using drying agents to clear secretions. But patients who’ve been lucid tell us it’s not generally uncomfortable. These medicines are given more for family comfort than the patient’s.
As one’s heart begins to not work as well, their blood pressure will drop and their heart rate will increase to compensate. The heart and lungs have difficulty providing extremities with oxygenated blood. This results in a process called mottling: bluish-purplish blotches appearing initially on the extremities, and ultimately progressing. It can be faint or quite pronounced. I had one family cheer their loved one on as they observed mottling progress up the arms: “Come on, you can do it, you’re almost there.” It was as if the arms were a thermometer gauging death’s advancement. It’s very common to see mottling on feet and legs, hands and arms, the tip of the nose, and around the mouth. Mottling is not painful and does not cause discomfort.
Several other physical things happen which can be disconcerting for bystanders. One’s temperature regulation system also stops working, and it’s common to develop a temperature. This is normally controlled with a Tylenol suppository, cool compresses, etc. Please don’t pile on the blankets. The other is perhaps the most troublesome and dangerous symptom of all: terminal agitation. As a result of neurological changes, it is common for one to become restless and agitated. This can present as picking at bed linens, appearing to pick dust particles from the air, to a wild flailing and calling out. I’ve had patients actually fling themselves out of bed, and even experience a hip fracture, as a result. A chaplain friend views terminal agitation as when the soul wrestles to free itself from the body. This is managed with anti-anxiety or anti-psychotic medications. It signals death is near.
For the most part, dying is harder on those watching than for those doing it. Dying is a time of mysteries and miracles. One gets the opportunity to go back and forth to where they’re headed several times—to have tours. Each time one goes over, they get to go a little further, and a little less of them has to come back. One gets to see and talk with loved ones and acquaintances that’ve passed on before. I hear patients say things like: “Where did all these people come from? How are they all going to fit in my room?” Or, “Don’t sit there, because Uncle Joe is sitting in that chair.” And I look around and see no one besides my patient and I. These are not hallucinatory experiences, or manifestations of a delirium caused by medications or the disease process. I’ve come to trust that Uncle Joe really is sitting in that chair—I just am perceptually challenged and unable to see him. He is as real, and probably more so, as I am. This is a universal experience, irrespective of religious belief or practice.
One nice lady told me I’d think she was “as crazy as a cucumber,” because her deceased husband came to be with her every night, like they were having a date. I replied, “I have to know, is he younger?” She said, “No he’s just more handsome.” Another woman shared her husband would come and stand in the doorway. One special lady told me “I see children playing.” I asked, “here in the room?” She said “no, in your eyes.” A nice man kept looking quizzically at where his ceiling and wall joined, and scratched his head. Come to find out he’d three deceased wives. I bet they all showed up, and he didn’t know quite what to do. Remember the man who was upset about being happy? He shared that he had repeated dreams his deceased wife would lie in bed with him at night. I suggested it wasn’t a dream—his wife was really lying.
Such experiences are comforting. And this distinguishes them from hallucinations or a delirium. For example, one lady was terrified she was going to be killed “for her body parts.” She was convinced they would be harvested and sold. I informed her she was too old—in her nineties—for her body parts to have any street value. I also gave her a note, on official looking paper, stating her body parts were not to be messed with. She put that note next to her breast, under her nightgown, patted it, and for days showed it to all who entered her room. “That man says you have to leave my body parts alone!” I was her hero.
What one normally thinks of as human consciousness is just the tip of the iceberg. I believe that as one’s ego awareness dims, one descends into ever deepening levels of consciousness and awareness. Soul consciousness if you will. The senses of the soul awaken and one becomes increasingly adept at using them. It is the eyes and ears of the soul that perceives Uncle Joe. And he, along with others, is present so that one is never alone. In the end, he’ll take your hand and you’ll go out the door together. It’s as easy as that.
One is given a window of time within which to die. But the final decision of when is up to us. So I always tell families to tell their loved one when they’re leaving and when they’ll be back, and to do so specifically in terms of time and day. And if family is coming from out of town, I make sure patients know what the current day and date is, and what day and time their family will arrive. “Just so you know.” I’ve had patients with a severe dementia and unresponsive wait to die until their family members arrived. I believe they are able to track time. I’ve had patients even wait for loved ones whose planes have been delayed. Conversely I’ve had patients who decided to die before their loved ones can leave for the airport. I think this was to prevent their worry. I had one patient wait to die until her granddaughter could visit from Eastern Europe, and her return flight had left the gate. It was like she was at the airport watching, and saying goodbye.
Along these lines, its very helpful for folks to receive permission from their loved ones to die. They will wait for this. One remarkable woman was remarkably lucid during her final hours. “Where are they? No one’s coming for me yet.” I’d shared with her stories of patients in her position seeing loved one’s who’d passed on before. “You have to be patient” I replied, “They’re not ready for you yet.” Fifteen minutes later, “Well, where are they?” “Patience.” Her family that was present huddled with me. “What is she waiting for?” Is there anyone else she’d want to hear from?” I asked. They had a family member from out of state talk with her by phone again. “Is there anyone else, a pet perhaps?” A dog that’d saved her life some months before was brought in. He laid his head next to her, and within fifteen minutes she died.
This lady had experienced many problems throughout her life: alcoholism, divorce, estrangement from children, etc. But she had a purity and gentle innocence about her. We talked much about her dying process, and specifically about what would happen with her soul when she died. She was certain she was eternally damned for her sins. First, I offered to trade her my place in heaven—that is if I have one. The further caveat is I’ve already traded my place innumerable times. So I’m not sure I really have a place to trade. She said she’d gladly trade, but longed for more certainty.
This nice lady was Catholic. She prayed the rosary several times daily. So I shared with her: “You know, Mary’s a personal friend of mine.” “Mary?” “Yes, you know, The Mary.” “Oh, that one.” “Yes. Now, I believe you’re not going to have any trouble walking right through the front gates of heaven. In fact, if they don’t let you in, I don’t want to go either. But, I have it on good authority that if you have any trouble getting in the front, you just go around to the back door and Mary will let you in. She’ll greet you with milk and cookies. And once you’re in, you’re in. And no one says no to their mother.” “Really?” “Absolutely. No problem. You just go right around to the back and be sure to use my name.” “I will.” I can’t tell you how relieved she looked.
I’m told that the night she died, her family (who weren’t particularly religious) saw a light glowing in her room. They thought someone was playing tricks on them, shining a light in the window from the outside. But checking outside, no one was there. And going back in the room, the light was still present. They say angels came to be with my patient when she died. I’ve not a doubt they escorted her through the front door. And Mary greeted her with milk and cookies.
I’d like to conclude with experiences of several families right after their loved ones passed away. And a thought from the nice people who pick up their bodies and transport them to the mortuary. These people work very hard, usually for seventy-two hour shifts. Several have shared they believe there’s a difference between “mostly dead,” and “all dead.” The mostly dead, they say are psychically active—they shared accounts of feeling someone touching the backs of their heads and necks. “Quite spooky in the middle of a dark, blustery night.” They contrast this with the all deads, who just lay there.
I had one man who’d served in the army air corps during World War II. Apparently, it was the tradition to turn on and off the runway lights several times when a plane returned home safely from its mission. Moments after he died, the lights in his room flickered on and off three times.
And lastly, I had a man complain that his very large family would be too busy talking on their cell phones to realize he was dead. “Call us when you get there,” they joked. Moments after he died, each one of their cell phones died, simultaneously.
Gene is a Licensed Clinical Social Worker and Cultural Mythologist. He received his Master of Social Work Degree from the University of Denver, and holds an MA in Mythological Studies With Emphasis in Depth Psychology from Pacifica Graduate Institute. For the past seven years, Gene was a Social Worker for The Denver Hospice. In addition, he has maintained a private psychotherapy practice for over twenty-five years. He specializes in working with substance abuse, depression, mood disorders, anxiety, adjustment disorders, and issues related to death and dying. He employs a variety of therapeutic techniques, integrating his understanding of archetypal psychology and mythology into his work. For more information, please refer to his website, LifeandRecovery.com. Gene is a past columnist to the online ezine “HeadlineMuse.com.” He may be contacted at email@example.com.Gene's Blog
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