One of my guys in hospice seems to have retreated further within himself. Today he barely acknowledged me in this noisiest of urban nursing facilities specializing in mental health. He seems to be busy or preoccupied now, trying to concentrate. Perhaps he’s let go of all volition and has something to teach me.
I sit. As the quiet grows between us I resist pulling out my tablet to chart, but observe him instead, and wait. He sits in his wheelchair, simply trying to shiver. You need muscles to shiver, so his wasted shanks prevent him warming that way. Plenty of skin shows itself for inspection though, bare arms spattered with mauve and beige foodstuffs worn like bits of carnival prize or a new sort of expressive art therapy. Ankles to mid-calf peek from under his veneer of pajama bottom. He hardly notices me. After a while I get up and gather some vital signs. Any skin my radiant heat-capturing thermometer reads turns its dial red and shows an “err”, meaning lower than 93F.
So, he folds his arms and crosses his legs, chin pressed into his caved-in chest, his unfocused gaze partly shrouded by an overhanging crash helmet fixes on foreshortened prospects. Steaming mugs of coffee, tea or cocoa will not be offered today. No shoes to step between the lino-covered concrete floor and his bony feet sheathed in cotton slip-ons. Both arms missed the hospital gown sleeves; they seem to have no place for him, fine if his crossed limbs lay beneath the fabric. Sometimes a t-shirt manifests, sometimes disappears. No use thinking about clothes if he still thinks. I can’t know, since he’s not spoken a word to me in a month, about anything. What’s the use of talking? Nothing do I get from him but “err”. He will remain cold, and nothing will change.
There will be more calamities, more death, more despair. Not the slightest indication of a change anywhere. The cancer of our time is eating us away.
Henry Miller, Tropic of Cancer
Today’s title comes from the fourth section of Sherman Alexie’s story “War Dances”. A character like him walks throughout a hospital, nowhere challenged since he has an “expression and posture of a man with a sick father and so I belonged”. He’s looking for a decent blanket to cover his miserable father who’s fresh from an amputation surgery, missing toes from one foot, no more foot on the other side. Also, no recovery room but haiya, what about that breezy, gurney-in-the-hallway view?
The son walks through the ER, Cancer, Heart and Vascular, Neurology and Orthopedic wards, in and out of Women’s Health, Pediatrics and Surgical Services, looking for someone who looks like himself, a Spokane Indian. How in the name of John Gardner’s Dream (that must not be disturbed) can this man, even with a suggested expression and posture, not be challenged while walking through ER, through surgery, or through Woman’s Health? Does his search represent a bit of metaphor food passing inside the white medical man’s body? He finally meets a guy of the Lummi tribe, waiting on his sister to give birth. They bond over some self-deprecation humor and the Lummi gives the Spokane guy shit about his assuming “Indians would just happen to have some extra blankets lying around”, but it comes out the guy’s sister so happens to have a “room full of Pendleton Blankets. New ones. Jesus, you think my sister was having, like, a dozen babies.” The Lummi guy comes back with his father and a new Star Pendleton blanket that the other father sings healing blessings onto.
Ah, the therapeutic magic of fiction, but it could’ve happened. Maybe it did happen that way, sort of. The part that interests me is how the Sherman Alexie character is set up to feel humiliated by having to beg an irritated nurse for basic needs like heat, then be rewarded with one thin cotton blanket. Humiliation is a good teacher — its lessons last a lifetime. He knows not to go back when twenty of those flimsy things may not be enough. Hospitals are sites where some could indulge in humiliation fantasies. Perhaps where hypochondriacs hide their undiagnosed masochistic streak.
Lack of warmth and medical worker non-regard of comfort is prevalent in institutional custodial care, especially when you are perceived as Other. Dying or merely wasted, skeletal folks don’t seem so human anymore. Thin people need extra clothes — ask any thinspo-programmed adolescent girl chasing the elusive thigh gap. Instead of heat or fleece, those with 16 cm bicep circumference get offered extra food portions when it’s too late. Food is the enemy to the nervous anorexic; to the dying, food can no longer be absorbed, but their remaining hours might be made easier with a good blanket.
When so thin and poorly clad, of course they won’t gain weight but keep losing it. But they’re in hospice anyway and expected to die, right? In addition to this low-grade suffering comes the waiting; no big push out of the door, but a slow-motion eviction notices from the living. But this eviscerated metaphor of life Being a Journey, or Wellness being a country, is bullshit. There are humans being humane, or else committed to being oblivious.
Dostoevsky, in his early novel The House of the Dead, about being sent to Siberia in lieu of being shot, said that man can get used to anything, and that’s about as close as he could come to describing the genius of our species. Yet unrelieved hardship extracts from life. I’m sure this lesson did not escape the casual notice of various banal Nazis working 8-hour shifts on the Final Solution, and then discussing it after hours over drinks.
Yesterday another man reached up for a greeting, his voice having left him. I clasped his hand that seemed so picturesque a moment before on its own pillow. Now those hand-holding pictures of hospice advertisements I made fun of (https://wordpress.com/post/hospicenursing.home.blog/1958) make better sense, the dying hands are so damn cold. Feeling my warmth drain into them, I didn’t want to let go too soon. The room itself felt cold. The humming AC wall unit was set to 65 degrees Fahrenheit, so I bumped it up to 74. That was easy. The following day the same scenario, so my visiting CNA turned the damn thing off. Ah, for a volunteer to knit a mitten; we’d settle now for anything cotton. I talked to the nurse about his being so cold. She nodded, then said, “Yeah, I think he’s transitioning”. But everything looked good, the faxed DNR came in and both the lorazepam and the morphine she called about was found on the admitting floor. She was glad I came anyway, since she will be the primary bereaved if this State Guardian man dies within the next 2 hours, she said, checking her watch. Try to keep the air conditioning off and keep the hands and arms covered, I said.
I used to bring my patients something warm, but the next visit finds him wearing something thin again or clothing I didn’t recognize. I’d check for his roommate wearing the long-sleeved fleece or watch for it while we sat in the dayroom. After catching myself scanning during a follow-up visit, I told myself, “Stop this”, and deliberated. I might as easily discover Time’s chop shop. Too easily we fall in with crusaders on religious missions to prevent injustice or right another wrong, to catch a thief, as during the weeks after our bicycles were first stolen. He might have traded the fleece for cigarettes.
Then again, I used to shiver in my bottom bunk bed during nights while trying to fall asleep with a hole-worn, threadbare polyester cover that mother washed and re-washed until it fairly floated over me, without the interference of a flat sheet under it. I didn’t know enough to complain or demand warmer covers. Perhaps because I was bedwetter I thought, “It’s all my fault”. Fifty years later I continue to seek the comfort of three imaginary dogs’ weight of swaddling at night. One is the loneliest number.
I continue to see the captive resident’s face on the un-housed, off-ramp panhandler. I wonder about homelessness then, about how many paychecks I and my neighbors are away from it. Can one catch it like covid-19? Like depression or psychosis? “Check your privileges” the woke activista now demands. When we personalize structural oppression, isn’t that like recycling cardboard tubes and expecting the ice caps to stop melting?
And why is it that I say “thank you” to those I give some money or food to?
EMTs working 24- or 48-hour shifts are being paid about as much as Aldi grocery clerks, no bonus for the PTSD of babysitting people with 9 out of 10 pains, on hold for hours against the hallway walls and no chance to go out for a smoke. Stand and lay where the APNs speak triage, suggest another thin blanket, and say “Hey, you could be in India right now”. (It’s suggested that he doesn’t quit his day job.) And by the way, within the last 14 days have you traveled out of the country? Who knows about St. Elsewhere, here the Chicago hospitals are open, have capacity and medicine. Some bars give you a free drink with proof that you’ve been vaccinated. We should have the vaccines ready outside of Wrigleyville bars, Comiskey Park, Garfield Park, museums, and Buckingham Fountain.
Speaking of hospitality, when will our restaurants regain their beautiful daily capacity to fold up the semblance and throw us out at the close of the empty-hourglass night? Closing time shifts into a moment of reverse Brigadoon when they even run out of water, 86 everything — a truer sort of Naked Lunch when everyone sees exactly what’s on the end of their pandemic forks. Music stops, lights brighten, men start clinking glassware at the bar and crash flatware into bus bins to give oblivious customers heads up: It’s time to leave. In France they have the decency to come to the table and say something closer to “Please settle up and leave” so they can go home too. Everyone is in the same boat, faced with the same reality of needing some rest, some of the time.
Which brings me back to my guy who doesn’t seem to know how to, or under the present circumstances, can’t rest. To rust — he’s got that down pat. He’s patient, having long since learned his trade of being one. He doesn’t owe me anything, not even a raised arm for blood pressure measures that would probably be inaccurate because my regular adult cuff is now too large. His burnt candle wax has long since guttered. If I lit him, he would sputter.
Covers, clothes, socks, undies — there’s dignity received in merely being clothed with clothes and not hospital gowns. This concept needs reinforcing from time to time. The depersonalized uniform of gowning: When I think of it, I ask my families to specify their mother is dressed to her shoes and out of bed by lunch during respite, if that is her custom. Day-long hospital gowns and bed rest is too often allowed during the 5-day hospice “benefit” called respite where muscle and memory deconditioning is helped along by an occasional, unaccustomed morphine dose that gives the appearance of everything seeming right while circling in the limbo of IPU. The patient is transferred home after being given a “one for the road” goodbye kiss of morphine, and then begins my dance of normalizing their loved one being delivered gowned and sedated while family are beside themselves with worry and remorse for ever sending their loved one away so that they can get more than 3 hours of continuous night’s sleep. I’m not a big fan of suggesting respite for those who don’t seem less than fully bedraggled from the burdens of caregiving.
A gift of time and attention determines our quality of life. I’m accustomed to witnessing no mutual gratifying relationships between staff and residents while in nursing homes or hospice units. But yesterday I heard that one of my former clients was recently reunited with some of his out-of-state family, to be brought back with them after months of living in one of our hospital units. He cried to leave them, his foster family of nurses and doctors. But that was after months of being grafted into a relationship.
My wish is not merely for blankets, but protection also wards off insults of unwanted sound, or at least provide some privacy. Linus Van Pelt in the comic strip Peanuts would throw his blanket over himself and get his wish instantly. Consider the inescapable radio and TV noise coming from behind a room divider curtain or wander alarms and sudden bursts of alarming announcements spoken too quick for understanding and too loud to soon recover from their shock. Hear this, my 92-year-old Air Force veteran who seems to escape into a Latter-Day Bataan Death March of dementia from the unaccustomed temperature, lighting, people, food, sounds fearful and constant. As you lay dying hear the sensory drone of competing TV and Hip Hop radio to hurry you toward the river Lethe where you can at last have relief in a respite of forgetting.
If blankets could provide a cloak of invisibility, then I’d be a Linus Van Pelt until the day I die. Being talked to rather than allowed to sit and read quietly, why would I expect to get more than a few minutes of needed solitude on the sunny deck while the family socialized inside during holidays? I suppose it’s time to move on from the social norms that recognize books in the hands, now that we are accustomed to scan for earbuds and poised thumbs.
One last thought about shivering reminds me of the sustained effects of chronic incontinence, starting a sequence of initial discomfort, then dermatitis itching from prolonged urea eating into the macerated flesh, moving forward to pain from eventual skin breakdown. On the same floor as my shivering guy, two other grown men’s sheets looked brown today from the dried urine on it.
Which honestly reminds me, it’s time to stock up again on Little Debbie Cosmic Brownies. Little Debbie’s trying to unload them at Aldi’s. Nobody doesn’t like coffee or sugary snacks. It’s what most of my patients would ask for if they could. Even the guys and occasional gal on the off-ramp wouldn’t pass up a Little Debbie. Today’s takeaway seems to be blankets and brownies: Get some, share them. And thank you!
Hospice Nursing 1 Day at a Time 