Sounds like a song hook, doesn’t it? Code Blue, Neuro ICU…. This one was an Alzheimer’s anecdote and a psychological saga, a tale of 900 miles plus two hospitals and a hospice, all rolled into one.
Some of our regular readers already know the tale by heart. As near as I can tell, though, I’ve never written about it before. In various comments on other posts, yes, but not on its own page. The pain was just too raw. Now it’s time. I’ve somewhat recovered from the experience. While combing through the website, replacing nonfunctional ads for my book (Tam the Tall Tale Teller) with working links, I found myself derailed by the Alzheimer’s Anecdotes Index…and inspired to finally write about the autumn of 2016.
October 23, 2106. Sunday afternoon. Powering south on I-35, rolling out of Minnesota into Iowa, I felt Tony the Tiger “Gr-r-reat!” My faith’s Worldwide Seminar in Chanhassen, the first I’d been able to attend in more than a decade, had recharged my batteries to the very tippy-top. Having approached this international get-together with the pure intention of doing what I could to serve, I’d been able to listen to a friend I hadn’t seen in some time, a friend whose years were catching up to him and whose back was bothering him. I watched him “lighten up” as he told me awesome things about his personal life, things about which I’d had no clue. His wife, also a close friend, had shown visible relief and appreciation during this chit-chat session.
That had been the #1 highlight of the Seminar for me. I was finally learning to shut my big mouth and open my ears at appropriate times.
My dress slacks and dress shoes were flung carelessly in the back seat where they’d landed after I’d changed into jeans and tennis shoes for the long run ahead. Life was good. My 1996 GMC Sierra pickup truck, aside from an inconsequential leak in the power steering hose, was humming right along. On, on, onward we went, hooking west on I-80 in Nebraska, pointing toward Wyoming and eventually Utah. Pam, my disabled yet still feisty and ever awesome redheaded wife, had decided to live with her daughter and son in law for a while, try it out. My honey has Alzheimer’s disease, fibromyalgia, a lack of collagen in her joints from head to toe, various joints that aren’t exactly up to snuff, bullet fragments in both feet and ankles from being shot twice with a .357 Magnum long before I met her, asthma, COPD, and the list goes on. Yet she still, and utterly understandably, needs a change of scenery from time to time. I needed to pick her up and take her home to Arizona, back to the Border Fort for a while.
Although Pam was residing with Amy and Jorge–in an upstairs bedroom, scary enough but necessary until the renter could be evicted from the mother-in-law apartment that would soon be Pam’s, she still needed to see her doctor in Arizona every other month before the practitioner could authorize the necessary prescription refills. The timing had worked out perfectly for October. I’d have her home by sometime Tuesday the 25th, she’d get a day to recuperate from the trip, and then she’d see the doctor on Thursday the 27th. Rest up another few days and then I’d run her back up to Utah.
Or so I thought.
Fatigue caught up with me around 10:00 p.m. I bought a hoodie at a truck stop, additional outer wear because of a cold snap in the area. Tipped the seat back, napped for about 3 hours, and off again.
At 7:00 a.m. on Monday, when I called Pam from a refueling stop just inside the eastern edge of Wyoming, she fired the first warning shot across my bow. “I’ve been going into a psychotic episode for the past couple of days,” she told me.
Guess I forgot to mention that Pammie is also mentally ill. Paranoid schizophrenic. Also bipolar. And when she really wants to, she can fool even me for a few days, even if I’m right there with her. She quits eating, quits taking her meds, quits hydrating, and generally sets herself up for a fall.
Neither of us had any idea just how severe this particular fall was going to be. Not yet. “Hang in there, sweetheart,” I told her. “I’m on my way. We’ll get you out of there and get you out of that episode, okay?”
You betcha okay. Except it wasn’t. She was already too far down in the well. Had I been able to pick her up right that minute, we (she and I) might have managed to prevent the onrushing wreck.
But I was still many hours away and the clock was ticking.
I also spoke to Amy, Pam’s daughter–with Pam’s concurrence. Amy informed me that Pam had taken to wearing her jeans inside out, even on a jaunt to Walmart, and that no one could convince her that wasn’t the right way to wear denim.
Ah, well, off we go. Across the high Wyoming desert, huge distances between gas stations, almost blew it but didn’t run out after all. At one stop, the 22 gallon tank took 22.6 gallons.
By 4:00 p.m., I’d whipped through the Cowboy State–officially the Equality State, but nobody I know calls Wyoming that–then down through the steep, twisty Utah canyon to I-84, eventually picking up I-15 north to a few miles outside of Corinne, Utah. Pammie was convinced her daughter was plotting against her (paranoia) but between Amy and me, we managed to coax my beloved out of the house and into the truck for a 7:00 p.m. departure.
For a brief time, I still thought we could pull her back from the brink, but no. By the time we were driving through the Salt Lake City area, it was full dark outside and I realized Pam was hunched against the passenger side door, hands covering her face. A bit of careful inquiry revealed that the lights–any lights–were assaulting her senses. Headlights, taillights, street lights, you name it.
Things got worse with every hour we traveled southward. I was getting pretty close to exhaustion but napping at Beaver, Utah, was out of the question. Too many street lights. South of there, cutting east on Highway 20, my frequent wide-spot napping area didn’t work either. By this time, I’d persuaded Pam to get in the back seat, where I’d piled plenty of blankets and even bedrolls for padding. She’s traveled thousands of miles this way with me, snoozing back there in comfort while I concentrate on driving. But that night it was not to be.
“I’m not going to sleep!” She declared frequently and fervently. She was convinced “they” (which now included me) wanted her to sleep and she was determined to thwart “them.” So she sat up, wide awake….
…and continued to, as I thought of it “pick at the lights.” Not the lights from outside the truck. She was seeing little lights everywhere, coming through the floorboards, the dash, the doors. To combat a “white light,” she continually twisted tiny bits of tissue paper, pushing “red light” down on the white light, which somehow neutralized the evil white light.
Scariest of all, to me anyway, blue lights were also now of the enemy camp. She had everything reversed.
It got so bad that she couldn’t take the horrible red backlight coming from my truck’s radio. I had to rig a handkerchief to hang down over that light.
Hold on. It gets worse.
By the time I gave up on napping at the wide spot, she’d added a new wrinkle. There are only a few people Pam totally trusts as drivers. Her son Zach is one of them. I’m another. But that night, her trust went away. All of a sudden–she was now back in the front passenger seat–she began screaming. “You’re in the wrong lane! You’re going to get us killed.”
Yes, there were oncoming headlights and we were on a two-lane highway…but I was not in the wrong lane, nor was the other driver.
It got worse.
As the night progressed, I was obviously–in her mind–going to get her killed every time there was another vehicle on the highway. Oncoming or from behind, it made no matter. When we got to the freeway, that didn’t matter either. Sometimes there didn’t even have to be a vehicle; she could see one.
Around 3:00 a.m., I could go no farther. She wasn’t happy but she was again in the back seat, sitting up and nattering on, dabbing at her lights including one big red light hole in her butt, not precisely at the anus but a couple of inches higher and slightly to one side. Against her vociferous protests, I crawled into the back of the truck, under the shell, on top of the luggage, and got about 45 minutes worth of much needed sleep with the hoodie pulled up over my head. We were on the Navajo Reservation at the time, parked in a pretty safe spot. Outside temperature was about 40 degrees Fahrenheit.
And away we went.
Things seemed to get a little better when the sun came up. She seemed–and here the operative word is seemed–to be pulling through the worst of it. She wasn’t quite as frightened of the traffic. The color blue had moved back into the positive column. At a rest stop between Flagstaff and Phoenix, I managed to persuade her to take her morning meds (likely the first time she’d swallowed any sort of pill in who knew how many days), she drank a little soda, and she relieved herself in the restroom.
All hopeful signs, right?
On we went.
It got worse again.
By the time we were south of Phoenix, I was “killing her for sure” on the freeway.
By the time we were within 50 miles of our off grid home near the Mexican border, every vehicle out there was a cop coming to get her and I had done some stupid driving that would get her (“us” was not part of her vocabulary by this time) busted for sure.
Fair amount of yelling, depending on your definition of “fair.”
Somehow. Somehow. Somehow we made it home. A 900 mile hell ride. Perhaps the Border Fort, which I’d built with my own two hands, primarily for her, would soothe her. Ditto the cats, both of whom she loved and neither of which she’d seen in weeks.
She ignored the cats entirely. Gato and Kitten Precious knew Mommie was out of whack; they were delighted to see me (I’d had a family friend feeding them while I was gone) but avoided Pam, wisely and entirely. She wouldn’t rest, wouldn’t take any more meds, wouldn’t eat, wouldn’t drink. All Pam could do was continue to mumble-rant and continue to “pick at the lights.”
Things were not improving.
I’d been thinking as much as I could. Finally told Pam, who had thought of going to the hospital but at the moment was against it, “I can’t leave you here alone. We’re going up to the hospital in Sierra Vista so I can find out what I have to do to get you committed.”
In the end, I picked her up bodily, carried her to the truck, sat her on the seat, and closed the door. She didn’t get back out; she simply sat there and gave me pieces of her mind. On the way to the hospital–a good 20 mile run–she was further convinced that my actions would result in her never ever ever being able to get a needed prescription again. In her view, I had become Public Enemy Number One.
Or more accurately, I suppose, Private Enemy Number One.
Anything I suggested–anything–she was 100% against.
So, destiny calls.
Checking with Emergency Room personnel was not encouraging. If I decided to “have her committed,” there would be delays. A social worker would have to visit the Border Fort, meet with Pam, evaluate the situation. I shuddered to think. Paranoid Pam and here comes the evil social worker? Pam’s life experiences with people of that sort has been mixed (I was once a social worker myself, for instance). Setting this up would be like playing soccer with a ball full of nitroglycerin rather than air.
I walked back out to the truck. Told Pam, “I’m not going to do it, honey. I can’t do that to you. I love you too much. We’re going home and whatever happens, happens. Even if you die–”
She cut me off. “I need to go in.”
Aha! We were at the hospital. I was against it, so now she was for it. I hid my relief. “Are you sure…?”
She was sure…but it still took me another 30 minutes to get her inside. Once out of the truck, she stood there in the parking lot, dropping her pants and dabbing at that “big red hole” in her butt.
Inside, it was suddenly obvious to ER personnel that they had a live one. I was permitted to sign her in despite not having her Power of Attorney with me. We had to wait for the triage room. Pam attempted repeatedly to bull through the locked door, tried to outfox the combination lock, and then collared (heh) a Catholic priest who wandered in all unaware. He held it together but was clearly nonplussed when she demanded answers about various colored lights and dark versus light and so on and so forth. By the time I got her away from the poor man, I’m pretty sure he was praying from the heart for deliverance.
Once inside the triage room, Pam tried to go immediately to the neurology (whacko) ward. Hospital security was now involved, though, with two young men in uniform blocking her way. I carefully blocked the other door, the one leading back to the waiting room. Pam tried bulling through me, too. I didn’t dare take a defensive posture because if I did, Security was likely to “assume” I was the bad guy here. Maybe abusive. Maybe the one who’d driven her over the edge in the first place. So I risked the lesser consequence. Stood square and relaxed, an easy target. One swift knee and she could have put me down for the count. Nothing swift about her at the moment, though. She stared up at me.
“You’re not going out this door except through me,” I told her softly, “and that’s not going to happen.”
She retreated, now equidistant from me and the Security guys. Dropped her inside-out jeans, dabbing at her butt, full monty to the poor guys in uniform.
“Pull your pants up, Mrs. Baker,” they pleaded in heartfelt tones. “Please pull your pants up.”
Which, for quite some time, she did not do.
I was grateful for the show. The more symptoms she showed, the less likely they would be to brush off my concerns.
Finally. Finally. Finally. No exam, but a room with a bed. Why no exam? It was now after hours and the ward had no doctor available. I gave a bunch of information, both background and present, to a nurse on duty. She wrote it all down. The nurse agreed I might was well go home and get some sleep. I told Pam I’d be back in the morning.
Pam was not impressed.
PHASE TWO: The Neurotoxic Syndrome
I got some sleep and was back at the hospital by midmorning on Wednesday, having first called Pam’s doctor’s office to advise them that she (Pam) was in the hospital with a psychotic episode and would not be able to make it to her regular appointment. That doctor doesn’t have hospital privileges anywhere, so she wouldn’t be visiting Pam. There was nothing for her to do but wait and see.
When I arrived, the nurse on duty had her school-type desk chair parked in Pam’s doorway to prevent Pam from rambling. Pam was not yet restrained, she sounded rational, and she was thrilled to see me. Her eyes lit up. “What did you bring me?” She asked eagerly. She seemed pretty close to Pam-normal, nothing like she’d been the previous evening.
Oh, foo. I had my cowboy had perched on my left hand and knew she’d jumped to conclusions. She believed I was smuggling her regular prescription drugs in under that hat.
In retrospect, it might have been better if I’d done just that. But I knew they’d be testing her blood and urine if they hadn’t already, and there would be no way to account for “normal” levels of drugs in her system.
When I disillusioned her, she lost it entirely. I was lower than low, scum of the Earth, made the anti Christ look like Mary Poppins, didn’t love her, was just plan eeeee-vil. Or words–loud words–to that effect.
Still no doctor that I could see, but I huddled up with the Registered Nurse on duty for nearly an hour, providing a more complete background picture of Pam’s mental health situation.
In the end, I had to leave again for the day, making calls to her daughter and son and a family friend, sitting down that night to “be Pam” and apply for Medicare online in her name. She’d turned 65 just one month earlier but we’d not thought to apply for Medicare immediately.
Another 24 hours passed. This time, I found her on the 2nd floor in a “regular” room, no longer in the Neuro ER. But she was not better. She was raging against the machine and I was the machine. It didn’t take me more than 15 minutes this time to give up for the day. “I’m not doing you any good this way,” I told her, and walked out. Still, not one single doctor had talked to me.
A few steps back toward the floor’s central hub, I heard my name called out. The caller’s name was Nancy and she was a Victim Advocate. She was also beautiful, both inside and out. Not that I noticed.
Finally! We sat down in a couple of chairs near the end of the hallway. For roughly 45 minutes, we connected. At the end of that session, Nancy said, “I have to apologize to you.”
“The staff had me convinced Pam had been dropped off by her husband, but then he’d gone off and left her. Abandoned her. That’s obviously not true. You care a lot.”
“Nancy, I’ve been here every day.”
“I know. I get it now.”
Back down the hallway, once again on my way out. Once again my name is called. Glory be, it’s a real live doctor this time. He wants permission to intubate.
“Her lungs are failing.”
Well, no kidding, Sherlock. Pam has an inherited, lifetime problem with the production of excess mucous. Every morning when she gets up, she has a whole hack-it-out routine, and it’s not pretty. She takes OTC Mucinex to aid the process. And here these brilliant Einstein medical care specialists had her flat on her back, not even raising the head of the bed. Of course her lungs were failing.
“Absolutely,” I said. “Go ahead. Intubate.”
My reasoning, however, was not exactly theirs. Yes, the intubation would keep her breathing, but it would also knock her out since obviously they’d have to sedate her for the procedure. If there was anything I wanted to see happen, it was Pam going unconscious for a day or two. By that time, she hadn’t slept a wink for at least a week.
I found a waiting room seat…and waited until a nurse came to tell me everything had gone well. She was sleeping now. Drug knockout “sleeping,” but I got the point. For the first time since leaving Minnesota, I went home and actually rested, deeply and gratefully.
By this time, on the negative side of the ledger, I was also getting sick. My right sinus was going nuts, post nasal drip, a bit worse each day. It had reached a point I knew well. Bronchitis (at least) was on its way. I managed to keep hiding my symptoms while visiting Pam but could not hide them from myself. One day, I walked into a local clinic (having no doctor of my own), waited a whole long bunch of time to see a practitioner…and once “examined” (if you could call it that) was sent on my way with no help at all. Cost, $175. Nice work if you can get it.
Pam was moved to ICU (Intensive Care). Things were not going well. While deeply sedated, her signs were stable, but lighten up on the deep sedation even a little and she’d be fighting her restraints, her athletic little body’s lower half climbing right out over the bed rail despite the cuffs on her wrists, hospital gown riding up around her ribs, flashing the nurses who were trying to keep her from breaking herself in half.
I struck up a quick, deep friendship with a male R.N. He explained the real problem to me. The doctors–obviously without consulting me or even reading the notes the nurses had added to the chart–had hit Pammie with two mega-whomper antipsychotic drugs…and she’d plunged into what they call neurotoxic syndrome. In other words, the anti-crazy drugs made her crazier and could have easily killed her.
Pam can’t handle any antipsychotic drug, but most especially the newer ones. Unfortunately, she’d convinced the staff I was both evil and missing in action, so did they think to seek my counsel? No way. They were the godlike physicians, thank you very much, and I but a lowly peasant, grubbing in the dirt. They were not about to seek Ted Bundy’s advice.
More days passed. The doctors attempted, every now and then, to bring Pam out of her drug-induced haze so she could cooperate with their instructions, allowing them to get the tube out of her throat.
At the end of one week in the hospital at Sierra Vista, they gave up. Admitted Pam’s case was beyond their skill levels.
It was my friend the R.N. and I who made the plan. He cared for Pam, a lot, and every day and/or evening when he was on shift we would get our heads together. He believed St. James Hospital in Tucson could do better for my wife, but it would mean sending her there in a helicopter, a Life Flight. Together, one hundred percent on the same page, we agreed that’s what needed to be done next. I authorized the move and he sold the doctor on the plan.
Take note, y’all: The doctor did not make the decision. He simply went along with the plan we sold him.
Pam had gone into the hospital in Sierra Vista in the evening of October 24. She was flown to the hospital in Tucson on October 31. I visited her in Tucson the first two days but then advised staff I’d need to start coming every other day because I was wearing plumb out and the run to Tucson was longer. They understood, and later when she was lucid, so did Pam.
PHASE THREE: Code Blue.
It was on a Tuesday when the best Neuro ICU doctor–with whom I’d, surprise, surprise, had a number of productive conversations–decided to try getting that tube out in Tucson. Unlike Sierra Vista, where I’d stayed in the room and done what I could to help calm Pam and try to get her to cooperate (and the doctors to understand her), in Tucson I was summarily relegated to the Neuro ICU waiting room, locked away from doctor and patient. Husbands, y’all understand, are trash.
“I’ll come out and give you an update as soon as I can,” he told me. “Shouldn’t be more than 15 minutes or so.”
I was alone in the waiting room, just the way I like it. Ten to twelve minutes had passed when I heard a call over the loudspeaker–not loud in the waiting room but I could hear it.
“Code Blue, Neuro ICU. Code Blue, Neuro ICU.”
Aha. Pam’s heart had stopped beating. That’s what Code Blue in a hospital usually means. There were only a few patients in the Neuro ICU ward that day and only Pam was having anything actively done at that time. Elementary, my dear Watson.
Well, I thought to myself, “it’ll be more than fifteen minutes. And I bet if they save her, they’ll never admit she had a Code Blue at all.” The awareness that Pam might pass from this Earth didn’t bother me at a conscious level. After all, I’d been half expecting her to wake up dead for nearly 18 years at that point, and a few times had been close indeed.
The staff, I was pretty sure, was a whole lot more nervous than I was.
Pam later told me she remembered them “hauling in that machine” (to jump start her heart) and also remembered yelling at them, “Get that thing out of here!” I have no doubt she did that. I also have no doubt she was out of her body when she did it and that her Soul voice went unheard.
A few times, I went to the locked door and punched the “Let me in!” buzzer. No response. This confirmed everything. Had their been no emergency, they’d have let a visitor in when he or she buzzed that door.
At the 45 minute mark, out came the physician, accompanied by a nurse as backup. They were shaken, obviously, though they did not know I read them like a large print book with pictures. I suspected the man’s nerves were pretty well shot.
“We had to re-intubate,” was basically the entire message…which took the doctor and nurse ten full minutes and maybe 500 words to explain. They admitted Pam’s lungs weren’t yet holding their own. They said nothing about her heart.
I didn’t challenge them. After all, they hadn’t exactly lied. If the heart is not pumping, the lungs aren’t going to keep the show going, now are they?
Eventually, Tucson did get the tube out. One day when I went in, she was all de-tubed and everything. In a regular (not ICU) room, too.
Wait. There’s more.
PHASE FOUR: Hospice.
They’d had a tech trying to get Pam to suck on ice chips so she could start swallowing wee drops of water by herself–but every time, she’d aspirate, the water heading for her lungs instead of her stomach. She’d start hacking it all back out and the staff was pessimistic.
Plus–and this was the worst part–she had a nasal feeding tube that had to come out. These things have a time limit, apparently; one can’t simply keep that tube in there indefinitely. So the next step would be a PEG tube.
“That’s where you punch a hole in her stomach for the tube?” I asked, already knowing the answer.
“I already know her answer, but she’s lucid today (relatively), so let me ask her.”
Which I did. No hospital staff could understand her, but between lip reading (her throat was damaged from the intubation and she couldn’t speak) and being together for 20 years at that point, I could. Her answer was, as I’d known it would be, “Not only no, but HELL no!”
I would not accept a PEG tube either. Nor, interestingly enough, would my lifetime R.N. kid sister accept one, and she’s seen it all.
But that meant, literally, starving to death.
That was fine with Pam.
Ah, but that meant the hospital had no further use for her. Hospice time.
Right then, Spirit reached out a helping hand. Pam let me know she had to go #2. That meant, basically, dumping in a diaper and letting a nurse clean it up. Which is part of why I sometimes marvel at the nursing profession. I went out into the hallway while Pam was doing her business. Squatted with my back against the wall, and…
…along came a hospital social worker. First one I’d seen, right when she was needed most. We chatted. She got to work and found a charity hospice room in Tucson in two hours flat. Some sort of record right there, methinks.
“Charity?” I protested. “Why charity?”
“You don’t have insurance, which qualifies you.”
Oh. Well, that was true. What Medicare would do later on, I had no idea.
For most of that afternoon, a couple of hours waiting for a room to be found and a couple more before all the proper paperwork forms were in place and signed, Pam and I enjoyed the quiet hospital room together.
And I do mean enjoyed.
First, she asked why she was going to hospice. She’d voted for it earlier but either hadn’t understood, had forgotten, or had simply decided to follow my lead. For the first time, I decided it was time to use the D-word.
“Because you’re dying,” I told her.
Up until that moment, when everyone was working their behinds off trying to save her (never mind the folks who gave her the wrong meds in Sierra Vista, they were still trying), she’d been on a downhill float–but now that all of us, including me, had given up…she was ticked off.
Reverse psychology to the rescue once again. After all, she is a redhead. If they think I’m dying, I’ll show them! Good, awesome, great, Pam-normal attitude.
As her first move, while we were waiting, she got it across to me that she wanted to try some more ice chips–but with me administering them, not the pro. I got a batch under the guise of needing a glass of ice water for myself. She tried. Aspirated, big deal, I’d seen her deal with aspiration more days than not for the previous 20 years. She knew what she was doing. After an hour of working with the ice chips off and on, she had them mastered–though of course we didn’t say anything to St. James staff.
By midnight that night, at the hospice, she was drinking water and eating pudding. She walked out under her own power, albeit on my arm, four days later, released and good to go. Our first stop was a Subway to get her some real food, and we took it from there.
One visit to her regular physician, then–five days after her release from hospice, she was back at Amy’s in Utah. She’d been “incarcerated” in one “institution” or another for a total of 22 days. As of today (July 26, 2019), she’s still alive and kicking.
Post Script. The experience also came cat whisker close to killing me. Not to make my part of the aftermath shaggy dog long, but on December 5, my low point, I found myself lying on my bed and realized I had no emotions. They simply didn’t exist. I did not care if I lived or died, did not care if I died and left a mess. Simply nothing. Nada. Zilch.
A couple of hours later, dragging myself out to the kitchen to open a package I’d picked up at the Post Office, I found out it was a bottle of liquid chlorophyll I’d ordered online. It gave me instant, recuperative energy. The struggle then continued until December 28, when I was finally able to get on the right antibiotics and finally begin kicking the massive infection that had been draining me for months.
All of that depletion had come from sharing my life energy with Pam, doing my utmost to keep her alive at the risk of my own life.
That’s the way love works, right?.