It's been a bad year for Dads. Two actually: 2012 and 2013. Two dads. This time last year was when my Dad began to seriously fail (we just didn't know it yet, because he was continuously being misdiagnosed with kidney stones, when in fact, he was actually having strokes). I didn't fully appreciate then just how long the list of Things Worse Than Death can get. (Now I do.)
Christmas was the longest, loneliest six weeks of my life -- hanging out by his hospital bed from Thanksgiving through New Year's, realizing slowly that he would have no other option than to be warehoused in longterm care for the rest of his life. Had there been a plug to be unplugged, I would have pulled it, beyond confident in his wishes (expressed out loud, a million times, over 70 years)- but that is so rarely how medical care actually works. Almost nothing is black and white; everything is gray.
We were extended dozens of kindnesses. Three friends took the brunt of it: rotating sitting duties (no mean feat), patiently transcribing the delirium-induced things he would say, so they could repeat them to the residents (but not to me), for medically diagnostic purposes. Our friend who runs a downtown restaurant fed him all his favorite foods, and would sit by his side and laugh with him about the hospital fare. My friends visited. His didn't. He is fundamentally alone. An only child, he has no brothers, no sisters, no parents, no aunts or uncles, no wife, no nieces or nephews, or cousins. He had people in his life he treated like sons and daughters -- and I know that's how he thought of them -- but they never showed. My Uncle (unrelated to him) looked out for him as best as he could, for as long as he could.
For a family in which the chronic refrain is, "Please don't let me outlive my mind," quite a few of us seem to do it. And for everyone who's quick to smugly point out "well, that would never happen to me... not as long as I have [a gun] [a prescription] [access to carbon monoxide] [a cyanide capsule]," I have two words: "Big. Talk." It'd be rare to encounter any finer southern family more heavily armed than ours is, but the first symptom of outliving your mind is.... You don't know it's happening. That's the thing.
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| Dad, at Christmas (2012) |
It's not like Alzheimers. He has all his memories. Every one of them. But he has no executive reasoning ability. He can't operate a microwave or a stove because that's a two-step process. But he doesn't know that he can't. He just thinks all microwaves are broken. The world he lives in could best be described as reality-adjacent. It borders the world the rest of us live in, and sometimes, they are just giant concentric circles. He can see us. He can look out the window and see the road to his house (sitting empty), but he's paralyzed as to how to get there. There's a phrase for dealing with losing a loved one a piece at a time like this -- "ambiguous loss" -- but I don't think I'd call it that.
It's a little frustrating when people ask me, "did he know you today?" Of course he knows me. He knows everything and everyone; he just doesn't know how to get along in the world anymore. I feel like I know what they're imagining -- it's turned up in enough made-for-Lifetime movies -- but the horror of his daily reality is so much different.
It's a much longer, more complicated story, but that's the Readers' Digest condensed version -- there are millions of words in progress (someday I'll write them) -- and it doesn't include the months of predatory ER crews who would repeatedly treat and street him, even when we begged them for something as simple as a CT scan, a basic test that might've at least clued them in on the difference between strokes, septic shock, and kidney stones. It was the worst experience of my life, and the greatest failure of my life that he is living out his days, imprisoned and warehoused and absolutely fully aware of just how miserable his existence is. Imagine Jack Nicholson's character's frustration in One Flew Over the Cuckoo's Nest and you have some idea.
All that's to say I was distracted at Christmas when my stepdad was due for his annual esophageal cancer followup. He nearly died of it in 2009, so I assumed these annual followups were pretty aggressive: a scope or two, a scan of some kind, perhaps some bloodwork, maybe a chest film. I assumed wrong. Pretty tragically, as it turns out. He had an endoscopy that (erroneously) proclaimed him cancer-free a few weeks before Christmas, but by January he'd lost his voice. As rare as it is to hear one doctor disparage another doctor, it's significant that the reaction from our current oncologist (after it took us six months to get to him) was, "how did this guy miss this in December?! Was he not even looking?"
There was a lot going around during last winter's cold and flu season, but the fact that he lost his voice instantly worried me anyway. I'm no doctor, but for this particular round of hoofbeats, I did hear zebras, not horses. First, it didn't sound like ordinary laryngitis; he sounded like he was being strangled. Second, he is an esophageal cancer patient, so anything going on in the head/neck area merits a close look. When he visited here in February to have his defibrillator replaced (he outlived the battery on the old one, which gives you just one small example of his tenacity), I said, "hey Pops, while we're here, let's go downstairs and take advantage of some of this world class medical care. They could look at your throat." He brushed me off brusquely as usual, "Geeeeeezus Christ, I can go see MY doctor, he's right on my way home."
"Well sure," I said, exasperated as usual. "Why wouldn't you leave the FIRST WORLD doctors we've got up here to go see if those backass third world quacks down there have some leeches they could put on your neck or something?"
"Shut. Up." my mother loud-whispered across the cafeteria table. "Stop looking down your hoity-toity snooty nose at us with all your first world bullshit. Stop calling us Third World." ("I'm not calling YOU third world," I'd try to explain. "I'm not looking down my nose at YOU.")
Unfortunately, he did go see his own doctor. Who gave him round after round of antibiotics for "bronchitis."
This went on for months and months. His voice deteriorated by the day, and he did too. He went from lively and vital and cutting his own grass and putting out a garden to sleeping all day in his recliner, exhausted by a hacking cough. He went to an ENT guy. He had a CT scan. He had a PET scan. The docs eventually read them. By this point, no one could miss the tumor that was completely obstructing his throat. They all agreed he should be referred up here for University care. Then... nothing. No referral. No returned phone calls.
I yelled at him for tolerating their indifference, their negligence. But he's from a different generation than I am. "You can't piss these doctors off," he cautioned me.
"Pissed off?" I'd rant. "More pissed off than sending you home to starve to death in your recliner?" I'd ask, outraged. "Because that's what they're doing now. How much more pissed off are we worried about making them?" He was afraid of making them mad, but he also genuinely liked them and thought they liked him, which I can only characterize as some sort of medical Stockholm syndrome.
On Father's Day, I gave him a flyer for an upcoming car show and told him I'd treat him to some rides (in planes and cars) to celebrate a nice father-daughter day. He looked a little panicked. "Don't buy the tickets yet! If I'm too sick to go, I don't want you to waste your money." He'd survived five bouts of cancer at this point, and he'd never said anything like that, so I took him seriously.
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| check-in for stepdad, July 2013 |
After months in the third world, it turned out that what the backass third-world quacks had missed in December eventually grew to be a golfball-size tumor in his throat and (although they likely came along later) a couple more dime-sized spots on his lungs.
Oddly, they weren't anxious to make those referrals to get his medical care transferred up here. Uncharacteristically, he called them every few days. He even went to visit. "I'm pretty sick, Joe," he'd say, to one of his "friends" who worked for the docs. "Can you try to help get me in?"
My Mom wrote notes to his doctor and hand-delivered them, begging for help, and both of them were told, "don't call us, we'll call you." The actual words to him were, "You don't need to keep coming down here. You don't need to keep calling us. We will let you know when we find out something." His response to my daily nagging was, "they said they're trying," and every day, I could hear more doubt and fear creeping into his voice. (I told him that I didn't believe or accept that; "trying" would be, "we're sorry. But the first appointment we could get you is in October. We did our best." They did not try.) They did send a bill for $4,000. that's still a mystery to all of us. Maybe that's the price tag for "trying."
On a Thursday morning, he woke up unable to swallow, or catch his breath. Finally, seven or eight months into this bout (metastatic lung cancer being his sixth -- and final -- cancer, following testicular, bladder, prostate, colon, and esophageal), he landed here through the ER doors on July 18. My Mom drove him. Admitted to the same hospital that had taken such impeccable care of my dad at Christmas, we were unlucky this time and drew a lazy Attending with an immature Resident. They only wasted a week (which isn't much by the third world standards he'd grown accustomed to), but that's a pretty significant percentage of "a couple months" which was the most he had left at that point. We didn't know that then, because they never had a Palliative Care team visit us in the Hospital (even though we requested it). We didn't even leave the hospital with a definitive diagnosis, much less a prognosis. (It took another couple weeks to ferret those out.)
During that one-week stay, he had neck biopsies, and an ENT surgeon put in a feeding tube. The first ER discharge came at 7 pm on a Friday night ("failing" is a nice way of describing drowning, choking, and smothering because the Attending couldn't be bothered to write a prescription for suction at home). Our discharge Nurse gave us a long list of "if this, this, or this happens, call the Doctor." Who is this mythical "Doctor" you are referring to? I pleaded. There are no doctors down there on nights or weekends, only answering machines. The suffering he went through that weekend is indescribable.
That Monday at 7 am was our first visit to Interventional Radiology where he was scheduled for a lung biopsy, but his lungs were so filled with fluid that they just drained it, sent it to pathology, and called it a day. They knew what they were seeing anyway; they told us it's called malignant pleural effusion. Had anybody bothered to drain his lungs during the Hospital stay, we'd have already known that we were coming down to a matter of weeks, not months. The Monday morning guy was also the first to ask me, almost as an afterthought, "did anybody give you the neck biopsy results in the Hospital?" No, they hadn't. He was very professional, very matter-of-fact, and he was the first person to even tell us definitively that the tumor was malignant (not that this came as any surprise by then).
He struggled through a few more painful days at home, and at the end of that week, on Friday, we went to our followups with the surgeon who'd installed the feeding tube; an oncologist; a radiologist; and a nutritionist (he's diabetic). The surgeon was the first person who ever said to us, "Stage 4," followed by the usual, "there is no Stage 5." He was also professional, matter-of-fact. Our old-school oncologist was insulted by the palliative care I asked for... he sees it as an indictment of how he's doing his job. He told us you can have palliative or treatment but you can't have both. (That's not true. I did the homework.) He didn't understand -- or maybe he didn't care -- that smalltown rural patients don't have any other way to access any sort of 24/7 healthcare in towns where the sidewalks roll up at 4 pm, and all the doctors turn on answering machines that say, "if you've reached this recording after 4:30, go to the hospital (a hospital that is, deservedly, in danger of losing its Medicare eligibility).
At least he treated us. He didn't ignore us. He's the one who showed us the scans, and he's the one who said, "how did this guy miss this in December?! Was he not even looking?" When he says Jump, referrals are made instantly. He got us into the Radiation department the same day, and he got us on his schedule for a followup visit in two days, which I suspect is unheard of. The scheduling girls up front seemed very displeased with him. That was a positively breakneck pace, and I appreciate him greatly for that. It was too little too late, but I suspect he's a good, competent, aggressive doctor. He drew up a program that included radiation and chemotherapy. He was kind to my stepdad, and patient with the fact that he couldn't hear. He spoke to him directly, and frankly. He treated us, because that's what oncologists do. When you're a hammer, everything looks like a nail.
Thanks to him, for a few days, we got to be just a normal, garden-variety, everyday, ordinary cancer family going to normal, garden-variety cancer treatment.
"A good egg," is what my stepdad calls him, in addition to "tweedy." He refers to him as "The Professor," and they got along well. After I prodded the Professor on the drowning and choking part at the followup visit, he agreed we should probably have a drain installed to tap the lungs (our radiation resident called it a Denver drain; our Onc nurse corrected me: it's a PleurX drain). The nurse said she would schedule this immediately and call us with the appointment. Right away. We should skip Radiation to get to it, it was so important. Two long days and agonizing nights later, I called back. Had we missed their call? We were told this was urgent. Turns out, she'd called in sick for two days. And all her files (or, as we might call them, "patients") just sat on her desk untouched while she was gone.(When anybody calls in sick at my office -- which is far from a life or death environment -- there's a system in place where work still gets done.) If this had been my doctor, and I hadn't heard back by lunchtime for an appointment she told me I needed, I would just call. But this time I didn't. I waited two agonizing days. Maybe I was starting to worry about pissing these doctors off.
We were also busy, so busy that bird-dogging them through the endless auto attendants wasn't exactly practical (call this number and press 4, then 7, then 4, then 7, then 77...then say Op-er-a-tor). There were pills to be crushed and sorted for morning, noon, evening, and bedtime. There were suction machines that didn't work and had to get traded in for ones that do. There were six cans of "nutrition" to be administered every day via peg-tube. (It smells like generic canned dog food, so it isn't surprising that nausea is a common side effect.) The crushed medication and the food have to go into the tube, but they can't go in at the same time. (Found that out the hard way.) Mom's oxygen has to be picked up and dropped off. Mom does it all. I just help a little. I make a lot of spreadsheets. There's laundry, laundry, laundry. Always laundry. The "supportive housing" dorm we stayed in provides one set of sheets and a few towels, with a washer/dryer on each floor (and we were incredibly grateful for that washer/dryer).
For two weeks, there was a radiation appointment scheduled every morning at 10. There's a shuttle -- a miracle shuttle with incredibly nice, helpful, solicitous drivers -- but he had to be accompanied at all times, of course, and he couldn't sit up for long enough to last the entire route. He was only well enough to ride it twice. They tried so hard to maintain their Independence (from me, from everyone), but that couldn't last long. I felt like a parent putting them on a schoolbus... to a classroom I knew would mostly be filled with pain and suffering. There were flash cards and white boards to be made to help him communicate because his voice is gone. It was hard to talk already and it's worse now that he has lost his hearing almost entirely. He sleeps all the time, and when he sleeps he lucid dreams. Sometimes it scares him.
So, two wasted days later, it was back to the ER.
The Onc Nurse eventually came back from her migraine-days-off and told us she recommended we go to the ER since -- not surprisingly on a Friday afternoon -- she now couldn't get us on the PleurX schedule for another week. In fact, she insisted we go. Immediately. On the drive over from the radiation clinic to the Hospital, Mom said, "Just so you know, I'm none too impressed with your First World Medical Care."
Now I felt beyond helpless. I'd never expected that we'd walk through the doors here into a miracle cure for cancer, but I had expected a system would kick in -- a system where at least we'd stop falling through the cracks. "Go to the ER..." This was the system?
At 7 pm on a Friday night, we got the drain, whatever it's called. There were no hospital rooms available, so they housed us in the ER for two days. Mom and I slept on a gurney (one gurney -- we didn't each have our own, obviously). We drew our very first kind hospital nurse, Bryan. (He found the gurney for us.)
Mom ran into our "Patient Navigator" from our first ER visit, and after she gave her the highlights, the Navigator sent a representative from "Customer Excellence" to visit us. I was honest about the lazy Attending and the immature Resident from our first one-week stay. I said there was no chance we would've done anything but fail.
At the ER, my stepdad got his days and nights mixed up, and so did I. No windows. At one point, he was very agitated that Mom and I weren't sweeping the broken glass up from the floor (from a lightbulb he broke ... in the kitchen at home... last summer). He joked about it later, telling everyone "Somehow I lost track of a whole day while I was in here. I misplaced it. That's never happened before." When he was awake, the cancer that has metastasized to the lungs cause him to cough so violently I think he'll crack one of his frail little ribs. As he loses weight daily, he is literally disappearing before our eyes.They "trained" us on how to tap his lung with the new drain, and gave us a kit.
This time they discharged us at 11:15 on a Saturday night. I had so wanted to get him outside during daylight. I thought it would help re-orient all of us. The Attending told us at 8 am we'd be going home. But no one told the nurses. Again, I didn't bird dog anyone. I was out picking up their prescriptions and doing the dorm room laundry. Mom kept asking the Nurses what was supposed to happen next, but by then, Bryan had rotated off shift, and everyone else ignored her (we weren't an emergent, or trauma case by then, which is why we had no business in an ER bed). At 10 pm, after shift change, I finally told the new Nurse, "our attending told us we'd be going home today. Technically, it's today for a couple more hours, but I suspect Medicare won't pay for a day they didn't order." Within minutes, a nurse manager showed up. She apologized for the mixup, and at 11:15 pm, we were on the road. No one screws with Medicare.
Over that two days in the ER, he had lost the ability to walk. Two weeks before that he could shuffle a little.The next week, he was agreeing to the wheelchair occasionally but reluctantly. We discovered getting him in and out of the car from the ER that even standing had become a struggle. It's a miracle we didn't drop him on his head, but we almost did. Again, we were failing.
Two days later I took him to the morning's radiation, and he started throwing up violently right after I scanned his little bar code that told them we'd arrived for our appointment. Throwing up is miserable for anyone... but imagine trying to throw up around the golfball-sized tumor that's blocking your throat.
I held his head over the trashcan. A nurse came out, followed by our radiology resident (who was our one constant ray of light in the wilderness). They took us upstairs to a room in clinic. He's so young, he doesn't filter anything. "This scares me," he said. "Good!" I said. "Me too!"
"I know it's the worst place in the world," he said, "but I'm afraid we're going to have to take him through the ER."
I shook my head No. We couldn't put him through that again. Overwhelmed and helpless for the hundredth time in a hundred days. "Wait," I said. I had written down the names of all our ER docs in my "Big Book of Cancer" notebook. And they had told me something about what to do if we failed this time. I just couldn't remember what. I paged through frantically, and I had written this with a gigantic sharpie: "Medicine Team One. Page Medicine Team One." They told me if we got in trouble, to page them. "They said they will come to us."
He arched a highly skeptical eyebrow, but he must've done it, because a few minutes later, he came back to the room, accompanied by one of our ER med students, who was followed almost immediately by our Resident, and then shortly after that, the very sweet, beautiful supervising Attending from the ER.
She gave us the Hard Talk. The Hospice Talk. Better late than never. I told her our oncologist had been very anti-palliative care and that I just didn't want to get crosswise with him. I wasn't in denial. I told her I would welcome a prognosis, with a time frame. I told her our Oncologist said he'd been managing symptoms for all 40 years of his practice and that we couldn't have palliative care and treatment. She said she'd talk to him. They conferred and she came back and told me that he agreed with her that we'd come to the end of the line. She didn't say it like that, of course. She told my stepdad The Professor was very sad about it. (I suspect she was just being nice, because kind as he was to us, I doubt he remembered us. It's a busy clinic.) Radiation could continue for a hospice patient, she said. It was palliative. He might be able to swallow again. Possibly eat a little. Maybe he could speak. Improve his quality of life. But chemotherapy is out under Hospice care.
"But I'd like to stick with my program," he told her so earnestly that I started crying again. "If I can. My doctors have a plan now, and I'm trying my best to stick with it."
She held his hand and rubbed his arm and said, very gently, "We've talked it over. And we agree it's time for a new plan."
Although she obviously meant well, the new plan did not turn out great, mostly because it included a hospital hospice "team" that could only be described as lackadaisical at best, callous at worst. They ignored pain management, nausea, and all the basics I'd seen my friends rave about as they shepherded their parents through this process in recent years. According to Interventional Radiology, they also typically ignored their pages, and forgot to provide their cell phone numbers to staff. (Their big book of hospice had a list of names in the inside cover, but no cell numbers, no pagers.) Their patient-indifferent attitude screamed, "eh, it's Hospice. You're dyin' anyway." The social worker was a hack (and that assessment was confirmed by a social worker pal who tried to talk to her on the phone).
When I say "pain management," let me be specific: they gave him hydrocodone which is, I believe, Tylenol with codeine. That's what the dentist gave me after I had my wisdom teeth out. It made me itch, and it didn't dull the pain, so I threw it out. I can't imagine that it is up to the task of end-stage cancer. With a lot of daily insistence on my part, they eventually tried oxycodone, but that gave him hallucinations.
On our last Thursday there, they gave him Haldol (they frequently did things like that while I was out of the room), which (likely) caused the urinary retention that forced him to leave with a catheter (and yet another opportunity for infection). If we'd had a choice, and they weren't a monopoly here in town, I would take all my dying business elsewhere.
The Friday we graduated from Radiation meant we could leave that hospital (they wouldn't let us stay; we weren't sick enough to be "appropriate" for inpatient care). They hadn't committed any crimes, at least -- our newly adopted minimum standard -- just garden variety carelessness and apathy. As a crew, they just seemed terribly ill-suited for the line of work they were in. The techs (paid at the lowest-rung of the food chain) were generally the kindest and most helpful people we encountered; the Nurses were perfunctory (with the exception of Bryan); and the doctors were a mixed bag. The surgeons were great; the last supervising attending at the ER did her best to get us through a complicated system; and our radiation resident is hopefully the future of medicine. I took the time to write a lengthy letter of recommendation about him before we even left, and sent it to the "Customer Excellence" contact I had met. He was extraordinary.
From there, we moved to the V.A. hospice.
I realized just how obviously indifferent the hospital hospice team had been to him when he said he was looking forward to the V.A. Nobody looks forward to the V.A. "I'm done being brave," he told our last hospital Nurse (the first time he's said anything like that in 60+ years of cancer bouts). "They take care of soldiers there. I think maybe they will know how to make me comfortable."
By and large, he was right. At least it was better.
V.A.s are notoriously described as an embarrassment to our armed forces -- but even though they're visibly understaffed, they seem to know what they're doing, and more importantly, they seem inclined to do it. Their resources are obviously limited, but they're clearly accustomed to doing a lot with a little. The nurses are harried, but most of them don't let that interfere with kindness. They answer every question honestly and directly, and they don't seem to feel that offering information is an intrusion on their process. There are a few bad apples, as there would be in any giant medical facility. One Nurse told us her background is "in factory work," and it shows. She spent 10 minutes counting blood pressure pills in front of us while my stepdad was writhing in agony...a few feet away from her cart. Again, let me be specific. What he said was (and he has no voice, so "croak" would be more accurate): "PLEASE. HELP ME. HELP ME NOW. PLEASE. I AM BEGGING YOU."
I asked her, tersely, "could you please give him his pain medicine and then go back to counting?" She snipped, "you're the boss."
Another told us brightly she'd been off work for a few months, "and it's surprising how you forget everything!"
But this will be our last stop. We have to make the best of the cards we're dealt, as he puts it.
Our corner room is huge -- two bays of windows -- with the most beautiful view of the entire campus. Even one of their brochures, obviously written for military families, gives caregivers permission to let go of the battle terminology, and they're right. The fight is over.
He is a DNR. Every time a hospice doc asks him about his wishes, if his heart stops, he always gets a little ahead of them: "torch me!" (He is really adamant about being cremated.) He wants a wake, not a funeral. "And there'd better be plenty of beer!" He tells that to his retired Priest every time he visits. As a veteran of the Korean conflict, he has been asked several times if he would like a military service, or a military burial alongside his brothers, he's blunt and firm, "No," he says. "I guess I'm spending eternity with the Episcopalians." But when the hospice chaplains ask him, "religion?" he unfailingly shrugs and answers, "None for me, thanks. But I don't mind if you do."
"Anything else?" they ask, that might be in accordance with his religious views? "No Voodoo," he told one of them.
On his first day at the V.A., he was very proud of completing all his radiation and wrote optimistically to me, "tell them I think by next week I will be able to eat real food." Then he specified, "With. My. Mouth." and underlined it, giving me the thumbs up signal.
But he knows his time is very short. "How am I gonna step out?" he asked our radiation resident, before we left the hospital. "That's what concerns me." He explained that he'd watched both of his brothers die, fellow veterans, one of them begging his younger brother to please get the gun and shoot him. Told that it will be the lung cancer, he said, "so that's the same road I'm going down?" He seemed deflated, but then shrugged. "I guess you never quite think you're finished. No matter what."
"How long have you guys known this will be my last hurrah?" was one of the last questions he had for our resident. "Since the day I met you," our resident answered him honestly, and respectfully.
All of that -- however many thousands of words that is -- is my long way of saying I have a lot of experience -- a full year's worth -- of people saying, "just let me know if there's anything I can do."
It always reminds me of the little-seen Mary Tyler Moore movie, Just Between Friends. In it, she's clearing the dishes at her husband's wake (Ted Danson), and all the departing guests approach her with, "if there's anything I can do..." She nails one of them with, "run the vacuum cleaner?" at which, the lady laughs awkwardly, "isn't she brave? you're just so brave." Meanwhile, her real friends (Sam Waterston and Christine Lahti) are circling quietly, taking out the trash, washing dishes, making the beds....
I have the Sam Waterston friends. They don't say, "If there's anything I can do..." Instead, they say, "what can I do?" or "how can I help?" Or else they just show up, and that's good too.
Once I explained that Mom had to be fed in a very particular way (you can't ask her if she's hungry; you can't call ahead and ask if she wants anything, you just have to put food in her hands), someone has dropped off at least one meal every few days, stocking our "dormitory" fridge and cupboard. Soups and sandwiches. Power bars for her purse. Trail Mix conveniently pre-packaged in mobile snack-packs. "No more cake!" she protests. "I couldn't eat another bite." They bring more cake. Cookies too. She loves cake. Chef Tom made her butter pecan ice cream. She refused to eat anything but butter pecan ice cream that entire day. When we arrived at the V.A., a frightening transition for all of us, there was a beautiful orchid waiting in our room from him and Michael. Even when the docs and nurses couldn't find our orders or the oxygen tubing, or get the AC to work, that orchid made us feel a little less anonymous.
When my lenses popped out of my glasses in the E.R., (aside: mthrfckin LensCrafters!), Jan was there with a drugstore repair kit (and a bag of Panera) 20 minutes later. (She and I often commiserate that our nearsightedness will be our mutual downfall in the zombie apocalypse.)
I have mysteriously broken phone charger after phone charger during hospital stints -- loaners and replacements immediately show up, thanks to the BFF. When we were told he could have Gatorade to re-hydrate (but every hospital coffeeshop closed at 3 pm, and my car was parked a mile away because of campus move-in day), she magically procured the Gatorade and delivered it within 15 minutes, even though Move-In had made every route inaccessible except by air drop.
People say they never know what to do or say?
So I thought I would start making some lists.
Just say something.
"I'm sorry this is happening," is a start. Some pals send me strings of emojis, and the emergency backup Straight sends me very silly memes. And his Showtime password. Those are all great.
Do anything.
If you don't know what to do, you can always fall back on the one thing that has never let me down yet: wash the dishes. Whether it's crisis or celebration, you can almost always help someone by washing the dishes.
If you're just the most casual social media acquaintance, and it's your kinda thing, a facebook prayer is ample. More than sufficient. (If you've met the patient or the family, at some point in the process, you will be expected to back that up with something more concrete, but relax: only if you live within a 10-mile radius.)
We have blood relatives who live within throwing distance of the hospital and who also seem to think a simple facebook prayer is sufficient, and that is not ok. Why didn't they visit when he could still enjoy their company? Or if the hospital was just too much, why didn't they drop by his house when he could still enjoy a cup of coffee with them? We have suspected all summer that this was his most serious illness yet, and we have been very candid with all friends and family. Their indifference has crushed my Mom. It embarrasses him, and that breaks my heart.
No one expects anyone to deal with death and dying easily.
If you do show up, don't tell a terminal patient they'll get better. Only two people have tried this so far. It isn't the worst thing you could say (we'll get to that), just a little condescending and tone-deaf.
Other things to avoid: "I'd love to help, but I just don't do hospitals." Yeah? Cause they're a laugh riot for most of us? Really, you're that sensitive? Nobody likes hospitals. Except for birth, we all spend the absolute worst times of our lives there. This doesn't make you special.
If you know any especially gruesome cancer horror stories, or old wives' tales about how cancer patients die, now would be a good time to keep those to yourself.
Another: "I'd help, but you know I don't cook." No one said this to us. We actually heard about this one from a patient's wife down the hall from us. She was trying to take care of her husband in the hospital and the kids at home, and when someone asked, "is there anything I can do?" she said some family meals would help. That's the answer she got.
It is ok not to cook. It's not a moral failing (necessarily). But maybe you know how drive-thrus work? One culinarily-challenged family friend brought us Starbucks gift cards (mercifully, most hospitals have a Starbucks now), and I have silently thanked her for every latte. Another friend just stuffed cash in Mom's jacket pocket when her back was turned. She had been in the hospital with her mom, and knew that all Hospitals tick on a cash currency -- there's vending machines, parking, and a dozen errands that somebody will need to be dispatched to do. There's never a working ATM when you need it, and most people don't arrive at the Hospital prepared for the fact that they will never be leaving it again. (I know that we didn't anyway.)
Books and magazines have been a godsend. Before those dropoffs, Mom was dragging ER magazines (teeming with god-knows-what) into our room. "Why don't you just walk over to the Infectious Disease unit and lick the walls?" I would ask.
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| the orchid that was waiting for us at our last stop. |
After pal Harriette stopped by with food for us yesterday and gave him one of her patented magic foot rubs, he wrote, "if I die right now, it wouldn't be for nuthin'." Then he winked at her.
He wrote "orange popsicle?" on his board. The V.A. didn't have any. Harriette jumped in her car and went to the grocery to buy him some.
In addition to being thankful beyond measure for gestures like these (and that's a short list), I try to remember to be grateful, every second, that he has retained every shred of his personality, his intelligence, and his sense of humor. At most of our prior hospitalizations (too many to count), he typically introduced me to medical crews as his stepdaughter. This time I notice he just introduces me as his daughter (every syllable's difficult for him). Except at the last interventional radiology appointment when they checked his drain, I wrote stepdaughter on some form. "Stepdaughter?" the resident asked him, to confirm. "I stepped on her, and she stuck," he told the resident, pausing to catch his breath between each word, grinning, and giving him a big thumbs up.
I never stop being amazed at how instinctively so many people seem to know exactly how to do and say exactly the right thing for him, and for us.
There have been a few exceptions. I thought I'd keep a list of those too. It might turn out to be useful to somebody.
Do not ever say, "you need to ease up" (or calm down, or cool off). You definitely shouldn't say it to anyone who's been worn down advocating for a patient's life (or what evolves into a battle for quality of life, in this case), but really, that's good advice in any situation; it doesn't have to be life or death. Anger is a reasonable response to dying, under the best of circumstances (as if such a thing exists). It's hard on any family, even if Grandma goes peacefully in her sleep at the age of 99. But bump that expected anger up a notch for caregivers who are in the dying trenches, all day, every day. Bump it up another few notches for anyone who's losing someone in the most incredibly senseless, criminal circumstance -- a crime victim, a casualty of a drunk driver, medical negligence/malpractice. Unless that family member is brandishing a weapon or actively threatening harm, let them have the rage, and let them express it however they see fit, as loud and as long as they like. If bad days spiral into years, and begin to wreck jobs and marriages, you might want to recommend a good therapist. Otherwise, it's appropriate. They've earned it. And it has to go somewhere. If you prefer your social media broadcasts to be filled with lighter fare, mute the feed, or unfollow, or de-friend. (Screaming at my BFF to stop eating chips because the bag was too loud was admittedly not one of my finer moments. My fuse will grow back someday, but it'll be a while.)
I never raised my voice to a medical professional. I never used any profanity in their presence (through sheer force of will), though it is typically part of my everyday vocabulary (often, a majority part). I did ask a lot of questions, which I know branded me as "difficult." But I never lost my temper with a doctor, a nurse, or a tech. I never interacted with his third-world docs at all, but once we made it to the first world, I was always respectful, and tried my best not to second-guess the professionals, with a few exceptions (like "please don't give my father any more Haldol"). I did roll my eyes, very loudly, when they moved us from one floor to another one Tuesday evening at 10 pm, and then refused to find my Mom one of the loveseats we'd had in the old room, because "they are being phased out." A Nurse was dispatched to "handle" me, and I very politely told her that I was sorry to be so curt, but that it was very difficult for my arthritic, oxygen-dependent, immuno -suppressed mother to sleep in a chair all night. She sleeps next to him every night, and not out of some misguided Romantic impulse. He absolutely requires every minute of all the 24/7 care we can give him. He cannot hear, and he cannot speak. This means he cannot call for help. If he pressed the Call button, he couldn't hear them answer. And they wouldn't hear him either. We weren't there to socialize. We keep track of his medications (if we step out for a minute, he gets nasty surprises, like the Haldol); we change the sheets; and we handle the bedpans, urinals, and potty chair. When Bryan offered my Mom coffee at the ER and she said Yes, I snapped at her: "Nurses aren't waitresses, Mom!" "I'm sorry," she said, and I instantly felt bad. "He offered," she said. Bryan reassured her, "believe me, if the worst thing anyone wants me to do is get coffee, it's been a good night." We tried very hard not to be a bother. Still, we never did get the loveseat. She slept in a chair for the rest of that week.
Don't say, "nobody lives forever." (It is true, but it isn't helpful.)
Don't say things like, "bring him home! We'll help!" You probably mean well, but unless you're a doctor or a skilled nurse who happens to be free and available for 24/7 care, don't bring it up. In my stepdad's case, he has a peg tube, a catheter, and a Denver drain. He is on 6 litres of oxygen. He is diabetic and his blood sugar now regularly measures 500+, so he is now insulin-dependent. The cancer has metastisized. He is in constant pain. He can't walk, and though he's down to an emaciated 160 pounds, you'd be surprised at how heavy that is. He struggles for every single breath (something called "air hunger"). Our beautiful Attending told us if he were her Dad, she wouldn't be able to safely manage his care at her house. I believe her. I am not an expert on terminal illness or cancer, but I left no stone unturned investigating every possible option that would have allowed him to die in his own bed, like he wanted. I would carry him there myself if I thought we could make it happen. There were no options, once the third world medical care system was factored in. We could not send him back to the care of the people whose criminal negligence killed him. If anyone tried, it would be with tire tracks across my face. I know of no solutions that would fix the system that killed him (short of lengthy prison terms), but if I were allowed one wish, some kindly accrediting agency would burn it to the ground, and sow the earth with salt.
I heard all of these, and while a lot of insensitive comments have been made that fall loosely under the category of "dumbass-but-well-intentioned," or, "they mean well," those are the ones I don't expect I'll get over anytime soon.
Don't blame the patient for dying. In the case of my stepdad, several people wistfully observe, "if only he wasn't so stubborn..." If he hadn't been so stubborn, the implication is, he would've come here sooner. If he had gotten here sooner, before it spread to the lungs, he would have undoubtedly had a better prognosis, with a much higher quality of life. That much is true. He is incredibly stubborn, but he is no more or less stubborn than I am. That stubbornness, though infuriating, is probably a big part of how he survived the military, and how he survived the first five bouts of cancer. But beyond all that, what I am afraid gets lost here, is: he did the right thing. He did exactly what he was supposed to do, in fact. He went in for his annual cancer check up. They missed it. When he lost his voice, he went to his doctor. He sat in that waiting room for hours and hours, and then he did what his doctor told him to do: he filled the prescription for antibiotics, and took every one of them. He is every bit as loyal as he is stubborn. He just put his faith in the wrong guys. Nobody deserves to die of stubborn. It isn't the stubborn that's killing him.
This one's important:
If you are one of the hearty few who's sitting with the patient so a caregiver can go eat or run an errand, do not pick up the phone and call unless it's an emergency. If you misplace the remote or anything else that's less than catastrophic, just text. This only happened to us once (and it was a relative, not one of our designated sitters). It took a lot of convincing to get Mom to leave his bedside at all, even for lunch. We were gone for 42 minutes when her phone rang. We both instantly assumed he had died. She burst into tears in the restaurant and screamed "let's just go! Take me back right NOW!" We left the salsa on the table and walked out. Nothing bad had happened -- nothing any worse than wanting to know what time Matlock comes on -- but the sound of that phone with the hospital room number flashing shaved five years off our lives.
When we were kids, and friends had either deaths or illness in the family, I always noticed my Mom observed a very specific routine. She went straight to K-Mart or Roses or Howards (we didn't have Targets or Costco back then) and stacked a buggy full of toilet paper, paper towels, paper plates, light bulbs, and trash bags. Then she'd drop it off on their porch, or if we knew where the spare key was (as everyone did back then, if the doors were even locked), she'd let herself in and unpack the bags in their kitchen.
How weird, I thought at the time. Can't these people afford their own toilet paper? I wondered (especially if it was a nice house, and it often was). Everyone else was bringing elaborate fruit baskets and fancy flowers and there we were with bags full of paper goods. (What a bunch of hicks we are, is probably what I also thought.)
Now having been on both sides of the equation, I know exactly what my Mom was doing. She was just taking some pressure off their breaking point. People can only solve so many problems at one time. No one knows when that last Bukowski shoelace will break.
At Christmas, when one college buddy said "is there anything I can do?" I took her at her word and sent her out to buy underwear. There wasn't time for laundry, and I figured a few six-packs would see me through the siege. Her texts were hilarious. "Victoria's Secret? Target? JCPenney? Macy's?" Various google-shared images were submitted for approval. "Small or extra-small?" (Now, that's a friend.)
Other pals baked cookies and brought candy for the Nurses at Christmas (never underestimate the power of feeding the Nurses), and those same pals (professional photographers) came by the cancer ward to shoot a few family portraits (that are so exquisite they're hard to look at). You might not be a professional photographer, but every patient needs a candy dish right next to their bed with a note that says, "Thank you for taking care of us. Help yourself." You don't have to be a cook to pick up a few bags of Snickers. Let the patient hand it out. My stepdad told me, "no guy likes to feel useless. I feel useless." It's a small thing, but right now, he still likes handing out the M & Ms.
Postscript:
8.28.2013 He died this morning at 3 am, holding my Mom's hand, in as much peace as we could have hoped for with end stage cancer.
from The Shoelace
it’s not the large things that
send a man to the
madhouse. death he’s ready for, or
murder, incest, robbery, fire, flood…
no, it’s the continuing series of small tragedies
that send a man to the
madhouse…
not the death of his love
but a shoelace that snaps
with no time left …
The dread of life
is that swarm of trivialities
that can kill quicker than cancer
and which are always there -
license plates or taxes
or expired driver’s license,
or hiring or firing,
doing it or having it done to you, or
roaches or flies or a
broken hook on a
screen, or out of gas
or too much gas,
the sink’s stopped-up, the landlord’s drunk,
the president doesn’t care and the governor’s
crazy.
light switch broken, mattress like a
porcupine;
$105 for a tune-up, carburetor and fuel pump at
sears roebuck;
and the phone bill’s up and the market’s
down
and the toilet chain is
broken,
and the light has burned out -
the hall light, the front light, the back light,
the inner light; it’s
darker than hell
and twice as
expensive.
then there’s always crabs and ingrown toenails
and people who insist they’re
your friends;
there’s always that and worse;
leaky faucet, christ and christmas;
blue salami, 9 day rains,
50 cent avocados
and purple
liverwurst.
or making it
as a waitress at norm’s on the split shift,
or as an emptier of
bedpans,
or as a carwash or a busboy
or a stealer of old lady’s purses
leaving them screaming on the sidewalks
with broken arms at the age of 80.
suddenly
2 red lights in your rear view mirror
and blood in your
underwear;
toothache, and $979 for a bridge
$300 for a gold
tooth,
and china and russia and america, and
long hair and short hair and no
hair, and beards and no
faces, and plenty of zigzag but no
pot, except maybe one to piss in
and the other one around your
gut.
with each broken shoelace
out of one hundred broken shoelaces,
one man, one woman, one
thing
enters a
madhouse.
so be careful
when you
bend over.
--Charles Bukowski
Ace, you are an amazing writer. You have a gift. I am still wiping my tears after reading your beautiful, eloquent, heart wrenching post. My thoughts are with you. And I am sending you virtual shoelaces and underwear from Iowa. I will bake a pie in honor of your Pops this weekend. With deepest love and sympathy and utmost respect, Your Pal Beth
ReplyDeleteWonderful writing about a difficult time. You write eloquently even about incompetence. And even more eloquently about the long, hard struggle of this man's death in an honest place somewhere beyond the need for being brave. Walt
ReplyDelete