Last Days
People ask, "What happened?" and say that it all seemed so sudden. It was. And I want to remember the details without having to actually keep rehearsing them in my head. So perhaps I should just set them out here for all of us.
I'm laying all this out before getting embroiled in probate, insurance, etc. I want as much of this sketched out before it becomes any harder to sort out than it already is (in my head, I need one more night to make the chronology work, so I know that events must be slightly scrambled in there).
On April 12, my mother collapsed in the bathroom after suffering abdominal pain and passing a large quantity of "frank blood." She pressed her Philips "Lifeline" necklace and emergency responders arrived very quickly, in just a few minutes. "Lifeline" notified me that she was being transported to Northside Hospital. After being stabilized in the E.R., my mom was transferred to Johnson City Medical Center Hospital for tests and more aggressive treatment.
"Colitis" seemed to be the order of the day. Somewhere along the way, someone said, "ischemic colitis." Then one of her doctors said something she took to be insulting to her regular physician and to one of the World Doctors attending her, and my mom refused further treatment from him. Two days later, she arranged for a few hours a day of home health care and talked her way out of the JCMCH.
Two days after that, she again suffered severe abdominal pain and was readmitted. One of her bridge buddies slipped off and called me surreptitiously, suggesting I should get over the mountains to see if my presence would make her feel better. Maybe she would cooperate more enthusiastically with her tests and treatments. She shuffled the deck of her attending doctors, essentially firing three and selecting five others before agreeing to a colonoscopy and an arteriogram. The colonoscopy showed nothing particularly alarming, but the arteriogram showed a drastic reduction in blood supply to her lower GI tract. (Nobody suggested that the situation was as dire as, in retrospect, it clearly was.) I drove back to NC, and in a few days, much sooner than I thought reasonable, Mom went home accompanied by Murph, her buddy from nurse's training 60 years ago.
On the way into the house, anxious to help unlock a recalcitrant front door, my mother fell and landed heavily on her left arm. Murph and our next door neighbor got Mom inside and comfortable. X-rays at Northside the next day showed that either the radius or ulna (I don't remember which) was badly broken. This, curiously enough, had an energizing effect: she might not know what to do about arterial damage, and there was precious little she could do about macular degeneration, but a broken arm was something Ellen Cortner, RN, could manage with panache. I spoke with her that evening by phone and she seemed almost delighted. (I'm home; my arm hurts. Your arm? What's wrong with your arm? Broke it! Ha!)
This bright presence did not last. The next day when I called she was much less in command. Her new-found, much-appreciated caregiver, Mona, said she seemed agitated, unable to get comfortable, and in some pain. She did not seem quite herself, and she was going to bed to see if a good night's sleep would help.
When the telephone rang about six the next morning, Amy says I hustled out of bed to take the call as if I had been expecting it. Mona had been trying to get an outside line since 2:30. I spent the next few hours buttoning up enough projects to insure that I would still have clients when I got home, sent out the bare minimum of notices saying that I was away on a family emergency of unknown duration and seriousness, made up some emergency access CD's so I could work from my mother's computer (or from public computers if need be) and left for Tennessee thinking I might be there a while.
By noon, I found my Mom, Mona, and Murph in her room at the JCMCH. Mom was groggy but not particularly uncomfortable. She spoke slowly but perfectly lucidly. Dilaudid. The phrase of the day was "between a rock and a hard place," which is how I heard my mother's condition described by at least two and probably three different experts. The doctors I spoke with talked of episodes, of getting past "this event," but the floor nurses seemed much less optimistic. Given my lifelong experience with nurses, I put a lot of stock in their perceptions. I stepped out and handed Amanda, the RN then overseeing my mom's care, the durable power of attorney I have held for almost 20 years and never before so much as opened. "Ah, good," she said, and seemed genuinely relieved that the family appreciated the seriousness of the situation and that there would be one person to make whatever calls needed making. Murph went home; Mona and I exchanged turns keeping an eye on Mom.
Later in the afternoon, Mom told Mona and me to call Murphy. Call Sally. What do you want us to tell them? "Tell them I'm dying." "They'll want to come see you, Ms. Ellen," Mona said. "Then don't call 'em," Mom said. We called.
By 9:30 that night, Mom was sleeping soundly, her meds were controlling her pain, her Xanax orders corresponded to her home regime, and I'd alerted the floor that my mother's hypertension was always just on the verge of skyrocketing (clonidine, every 3 hours...). Her O2 monitor kept alarming as her O2-sat fluctuated around 90%. Whenever it touched 89, the monitor beeped and sometimes roused her (fire bells, fire dogs...). Nobody arrived to adjust it so I gathered this was not a critical event. I reprogrammed it to go off at 85, then at 82, and left a note saying what I had done. She was on 2 liters of O2, a low flow directed into her nostrils to keep from drying out her mouth. Jeebers, she's in a hospital, I thought, now that everyone knows everything I can tell them, what exactly am I supposed to do here? I told the nurses at the station about resetting the O2 alarm and took Mom's standard advice to families of patients: I went home for the night. We've never been a hold-a-vigil-with-the-patient kind of family. We let hospitals do what they do best.
In the morning, Mom was still herself, although she was speaking slowly and deliberately. I placed her 80th birthday photograph prominently by her bed; I wanted to encourage her caregivers to see her as she wanted to be seen rather than as the weak sparrow she had become. "Honey," and "Sweetie," they called her, and I quietly advised that she would respond better to "Ellen" and much better to "Mrs. Cortner." They obliged. I took evey opportunity to tell them one of my mother's favoirte tales from her early nursing career: when you're on the night shift and there's nothing else to do, you sharpened hypodermic needles on a whetstone. Know how to tell when they're sharp? You pull them backwards through a cotton ball; if they don't catch and pull fibers out, they have no rough edges or barbs and they're good to go. I wanted them to see her as one of their elders.
My mother obviously wanted to and was capable of participating in decisions, but she was several beats behind the measure. I arrived just in time for morning rounds and sat by as Dr. Zuhkle (surgeon) described what the arteriogram had shown and what his concerns about my mother's condition were. To underline how serious her condition was or could become, he replaced the "rock and a hard place" metaphor with two different remarks. One was alarming in its indirectness, the other wonderfully uncouched. "Has anyone spoken with you?" he asked me, largely removing any need to, I thought. And added after a brief rehearsal of the arteriogram, "This could be catastrophic." He wasn't saying anything my mother didn't already know. "I'm not ready to check out just yet," she said, "don't worry."
I accompanied Dr. Zuhkle into the hall outside my mother's room. If this is the kind of young surgeon we are training here, we are doing very well. He could not have handled this discussion any better: he laid out the reasons a couple of surgeries would be options for a younger, healthier patient and why neither really made sense for my mother. "I don't want to do an operation that I don't think will help the patient, and I don't want to operate when surgery might end the patient's life," he said. The state of the abdominal arteries were indicative of much more widespread arterial damage; they'd only happened to be the first to fail. He explained that the aorta divided into three large arteries to supply the gastro-intestinal tract. One of my mother's had failed "probably decades ago." That's OK, the other two can make up the difference. But one of the others had begun to fail some days prior to that first hospitalization a few weeks before, and it had pretty much closed off completely at that time. By now the vessels that artery supplied were very seriously compromised. The third artery couldn't keep up with demand by itself, and the result was intestinal angina, very much like cardiac angina.
[Some background, worked out after the fact, in case anyone wants the details: the aorta's branches here are the celiac artery, the superior mesenteric artery, and the inferior mesenteric artery; one of the two latter was the only artery still functioning; what we had here was likely acute mesenteric ischemia, having progressed from hyperactive through paralytic phases into the shock phase some days prior to diagnosis. The arteriogram indicated an arterial thrombosis of the most recently damaged artery, and even with prompt diagnosis, the mortality rate for that combination is above 75%. The 1 in 4 survival rate presumes surgical intervention within 12-24 hours. This seems much more dire than the doctors indicated to me and more in line with the nursing staff's darker, more pragmatic judgement. For what it's worth, my mother's heart murmur, history of multiple catheterizations, and high blood pressure related to arteriosclerosis are classic risk factors for mesenteric ischemia.]
Dr. Zhukle layed out what was going on and let me work out the options for myself until I could see that none of them ended with recovery.
So, I said, colostomy or any other abdominal surgery is rght out because of her general health and widespread arterial disease, right? And you can't try stenting any of these arteries, because first, there's no circulatory system to handle the blood flow to one part of the bowel, and second the damaged circulatory system associated with the second artery is so full of decay products by now that you probably wouldn't want to restore that blood flow even if you could. And finally, stenting the one remaining artery can't help because even if it were working perfectly, it couldn't supply enough blood. That's about it?
Well, if not all of it, that was most of it. As I understood it, restoring blood flow into the recently-blocked mesenteric artery would be analogous to mishandling a crush injury with blood perfusion after some days of occlusion. Get the blood going and you'll produce septic shock in very short order. Now, he said, the news is not all bad: the bowel is not dead. There's no necrosis, yet, but I think we're right at that point, just this side of that cliff. He pulled up my Mom's charts and went over the numbers on a blood panel that would indicate when that line was crossed. "That would be a crisis," I think he said, or perhaps he reiterated a metaphor involving a cliff. "If we get that far," he said.
I acknowledged that there was some pneumonia involved. I think we both knew what we meant by that, but who can be sure.
Now, he said, she might get past this episode. If she does, then what? There is no crystal ball. But anything by mouth will likely trigger another 'intestinal attack.' And if she does go home, she's going to have to have someone there 24 hours. As in RN's, nurses? No, not necessarily. Skilled care a few hours a day would be needed to maintain IV's. Except for that, just someone to help her get around.
Bill Hyers came by. We visitted in the hallway for half an hour or so (thank you Bill!).
Barbara and Sally from the bridge club visitted.
More than once, I heard "there's not really anything else we can do for her here," which I (mistakenly) took to portend an imminent release.
I scheduled consults with hospice workers. We spent time figuring out which of the available options would work. Which were covered by my mom's insurance (all options available, everything covered... good job, Mom). Only home hospice seemed to make any sense. At this point, a misunderstanding occured. The hospice worker or the nurses or someone got the idea that we wanted to try home hospice, that is, that it was not just something to have ready to invoke in case the hospital decided to discharge a patient for whom their resources were no longer appropriate.
While sitting in my mother's room waiting for a hospice consult, my mom asked why she was on a nothing by mouth regime. Anything by mouth seems to trigger your abdominal pain, I said. "They're not thinking about surgery are they?" No. "Good," she said. "You do not want surgery, then. Is that right?" "No surgery." So that was clear.
Dr. Julie Dunn, the managing physician came by. "Has anyone spoken to you?" she said. "Yes, I had a very clear discussion with Dr. Zuhkle." She repeated the no crystal ball thing. Said there was nothing more the hospital could do, except keep my mom comfortable and hope that this episode might pass, then see what options we had. I said I'd been talking to the home hospice people and that my business was portable; I could relocate to Tennessee in a day or two. "You might find that you drive each other crazy..." she said. "Oh, no, we lived in the same house forever, up until about ten years ago." Good, then, that will probably work fine. My mom caught up with the conversation about then. "We'll have to talk about this," she said. "OK," I said, "We can talk," I said, "But that's the only way you're going home." Hm, she said.
That evening, Mom was retaining fluid and it was compromising her ability to breathe. After putting her on Plavix, the hospital was unable to fit a catheter and sent for a smaller one. Until it arrived, I was warned that I needed to be alert to help keep her dry. Fortunately, the catheter arrived quickly and this was not a problem. Her one good kidney was functioning well and by morning the fluid problem seemed largely controlled.
Mom's O2-sat that night was hovering around 82. Her temperature had spiked up during the day to 101.4 (which was very high for her; her normal temperature was 97). Blood pressure had been steadily declining, from something like 115/60 at the beginning of this hospitalization to 90/50, then 75/40. "Sometimes it goes back up toward the end," a floor nurse said, "People think, 'oh, good, she's getting better,' but it doesn't mean anything."
I called it a night.
In the morning, O2 and blood pressure monitors had been removed; they were reattached periodically for reporting purposes. The first O2 number I saw was 78. Her young nurse said that was a little better. Lord, I said, what had it been? 72 earlier. That was with 10-liters of O2-flow and a mask. Fever was mostly gone (98 something), and systolic bp was hanging in at around 75-80. I kept my mom's lips moistened with a small sponge on a stick and slipped her chips of ice.
"You're a doll," she said. And a little later, apropos of no conversation of which I was aware, she looked up suddenly and said, "But you'll be all alone!""No, I won't!" I said, mustering the cheeriest voice and devil-may-care attitude imaginable (I probably overshot my intent a little), "I've got Amy!" She thought about that for a moment, clearly a little surprised. "Oh, that's right," she said. "Well. I'm OK with that." Good, I said, so am I. A few seconds later she glanced up, seeking eye contact again. Yes? "Get another dog," she said. "Well, we might," I said. She said, "Maybe two." "How about another cat?" I asked. "Not mine." "No, not yours," I said, "Candy says she'll take care of him, and if she can't find a home for him, I'll call the Cats Cradle people. He'll be fine." "'K, that's good," she said. And as odd as it seems -- you'd think I'd be sure, but the mind being what it is, I'm not -- that may be the last coherent words I heard.
Murph noticed that the bed around my mother's right side was damp. Her IV had come undone or a junction had sprung a leak. Given the state of my mom's veins and her fluid retention, the RN on duty could not restart an IV. Michael, the acknowledged master of the IV, came in to try. We found a good vein on her upper right arm. But it wouldn't hold, either. I told him about sharpening needles.
A nurse gave her Dilaudid, IM in her upper left arm. That would work, she said, but not as well as IV. Uptake wasn't as fast and not quite as efficient, but it worked, she said. It did.
The Hospice worker came by. There was a problem: she had to have a working IV for nutrition at home. We could do a PICC (peripherally inserted central catheter) line for feeding and antibiotics, she said. I'd look into it, I said. I found a nurse, said I really needed to talk to someone up on end-of-life issues. A chaplain? No, someone who can help with the benefits and liabilities of the things we're talking about, someone who can help me sort out what's realistic and what's not, which health problems matter and which ones are beside the point. We're talking about a lot of options here and I just want to know how they fit together. In a little while, Dr. Johns appeared, asked my Mom how she was feeling. He got no response. I ushered him into the hall. Tell me about this PICC catheter; how invasive is ir? Pretty. To what end? Well, she could be fed, and given antibiotics. The pneumonia? Well, that is not her biggest problem, he said. I know, I said --I might have interrupted him-- but her biggest problem is almost certainly lethal and painful. "Untreated pneumonia has always been 'the old person's friend,'" I said. There are only two reasons to do an invasive catherization -- one is to continue meds at home and the other would be to introduce antibiotics to treat the pneumonia. Until we know we need it for home care, there's only one reason for the catheter and that's to treat the pneumonia. I don't think we should do it just for that, I said, even if it means we would have to let pneumonia run its course. Yes, he said, we do that. But if you want the PICC, we can do that, too. OK. I said, look, at this point the catheter is really only important if we're talking about home hospice or if we're talking about several days here, so I really need your best guess: are we going to get that far? I don't think so, he said. She can stay here? I asked. Yes, of course. And you can keep her comfortable? Absolutely. (I wanted to say "Namiste" but wasn't sure it was appropriate.) What it really came down to was, You're the one with the POA and we will do as you say. All right, then we're not doing the PICC line, I said. I thanked Dr. Johns, shook his hand, and went back to my mother's bedside.
And so, finally, we'd figured out that no one wanted to release her. Hospice had scrambled only because I'd mentioned the possibility, and I only wanted to be prepared in case this turned into a protracted seige and her insurance and Medicare and the JCMCH wanted her out. There were only two patients on the floor, and nobody, absolutely nobody, was ready to discharge Ms. Ellen.
Her O2 fell into the mid- and then low-60's. She had a couphing spell. Murph suctioned her mouth gently, but that seemed to rouse her and agitate her. Help me! she said. Oh, please! I got the sense that it might be her old nemesis leg cramps, but could feel none. In case her back was hurting, as usual, Murph and I rearranged her into some semblance of her customary (contorted) sleeping posture, propped her there with pillows. Her reactions didn't seem exactly like pain. I asked a nurse if she was still getting her Xanax on schedule. No, it had to be given by mouth... So how long had it been...36? 48 hours? I said she might be in some kind of withdrawal; she always exhibited classic Xanax withdrawal symptoms when she missed even a couple of doses. That needed to be taken care of and we needed something for pain, too, now that she no longer had an IV.
Her nurse came in to administer an IM injection of Dilaudid and Ativan. Well, I thought, that should take care of just about anything. She was asleep in seconds, apparently at rest. I asked how often she could have more. Current orders were every 3 hours, but her nurse promised the orders would be amended to "as needed."
Murph went home. I hovered in and out of the room. I intercepted well-intentioned respiratory therapists. Got housekeeping to let me bring trash out of her room rather than risk a commotion.
In the meantime, Amy called, said she would be over in about 3 hours.
Norma came by, spent an hour or so with me (thank you Norma!), and then left for New Orleans.
Out in the hall, I had a long talk with a Connecticut transplant. Property taxes (there) versus sales taxes (here).
Amy arrived. We looked in on Mom again. She was lying on her side, as Murph and I had arranged her, breathing with apparent effort, as usual. She was not agitated, in no evident pain, sleeping as soundly as she ever did, aided by Dilaudid.
We went down to the patient's advocate's office beside the ICU to see about accomodations for the next few nights, selected a hotel, and drove to my mother's home to check messages, take care of loose ends. We were on the way to get some dinner when the cat wanted in. I fed him and started to close the door behind me.
The phone rang. JCMCH. Was this David? "I'm sorry to tell you that Ellen passed away..." I found Amy on the sidewalk outside (such lovely evening light). "The hospital just called," I said. "Show's over."
We went back out to sign papers and set a new set of wheels in motion. I called Murph, but she already knew. She had called and gotten no answer, then called the floor station, and the nurses discovered Mom, exactly as we had left her. Cardiac arrest / respiratory failure the chart said.
Dinner, phone calls, hotel...
Next day, funeral home / crematory and back to the hospital for disposal of old medicines...
Michael accompanied me down to the pharmacy where a small fortune in useless prescriptions had just become "hazardous waste." He opined that sometimes they hang on until everyone leaves, as if they just don't want to go in front of the family. I have no idea if that was true, but it was a kind thing to say. If this is the sort of nurse we are training here, we're doing well.
obituary | eulogy | last days | more to come