My Mother’s Last Three Days

Easily the most read and commented upon post on this blog is one that I wrote after my father’s death, How to Know When Death is Imminent, Signs Someone is Dying.

My mother died six weeks ago on July 9, 2015. I called my father’s death “hard work.” It was the first for which I had kept vigil, and now I know his was an easy one, at least for me. He suffered from Parkinson’s, dementia, and Alzheimer’s and had been in and out of consciousness for days prior to his death. He couldn’t talk, so I did not know if he was in pai or scared. He rallied to smile once, although I could tell from his eyes he was aware that people were with him.

My mother only lost consciousness at the very end, helped along, I think, by generous doses of morphine.

She had been totally bedridden for 18 months, and full assist (had to be fed) for the last six or so.

But she never became demented.

My mother was disabled by rheumatoid arthritis, and weakened and finally defeated by kidney failure. The last year of her life she was assaulted by edema. Using diuretics compromised her kidney function. Not using diuretics meant her arms especially would look like half-full water balloons, and every time she would be touched, she was in pain. Even the seam allowances on the insides of her sleeves tormented her. This is what we could see. Edema also puts a strain on the heart.

Through careful monitoring, the doctor was adding the diuretics as needed, then pulling back when the kidney function numbers started looking alarming; then repeat and repeat.

My mom had a decent quality of life, primarily because of the graciousness and professionalism of the staff of Pisgah Manor Nursing Home, who I will never be able to praise highly enough. My mom loved her meals, and she raved about the food. I’d leave Pigsah Manor hungry when I’d come to feed her. Let’s stop and consider that: Have you ever heard any visitors say they left a nursing home hungry? And my mom loved to bird watch. We had several feeders going outside her window, and I have never spent so much time bird-watching. This spring and summer brought so many goldfinches.

Then at the end of June, I had a call that my mom was hallucinating horrifying scenarios, like her blankets were on fire and George W. Bush’s dog was bleeding out on her bed (really). The nursing home suspected a urinary tract infection, and the specimen confirmed this; within a few days she seemed much better, but for the first time wasn’t eating every morsel on her plate. I heard a strange sound from her lungs, like a cat mewling.

Monday, July 6, I went out to the home; they were about to call me anyway. My mother had a gurgling sound in her lungs now, but no other cold, flu, or virus symptoms. She obviously did not feel well; she had no appetite and would only drink with persuasion.

When her morning CNA left, she reported that my mom had produced no urine. I knew we were likely in trouble then; I had learned that when my dad died.

That night, I made calls to those I needed to. There was a contingent who thought I should have her transferred to the hospital. They were certain that once there, she’d get some medication that would fix her up just fine. I decided, since she was fully cognizant, to ask her what she wanted to do.

Tuesday a catheter was inserted. After her bladder was drained, it was obvious she was simply not making urine. I told my mother she was very sick, and asked if she wanted to go to the hospital. She declared she would fight this problem at the nursing home among people who cared for her.

The next two days, my mom was frightened and in pain. She said over and over and over again: “I can’t breathe.” And over and over I would tell her that yes she could breathe, if she could not, she couldn’t talk. She had supplementary oxygen; we would tell her to breathe through her nose calmly and slowly and out through her mouth. It didn’t work.

“I can’t breathe.”

She sounded like — and likely felt like — she was drowning. Edema had spread to her lungs.

Still no urine: we were coming to the end. The nurses did not hide this from me. Always there is the caveat that no one knows for sure, people will surprise you and so on, but there was no reason to believe this would be one of those times.

I was encouraged to go home and rest. Wednesday morning when I walked in I immediately noticed two changes. My mom was ashen, especially on her upper lip area, chin, and the region of the face around her mouth.

I am not trying to be poetic when I use “ashen.” It is used for a reason. The color is much the same as ash.

I’m also not trying to be poetic when I say that the light had gone out of her eyes. This is hard to explain, but there was a haziness or dimness. Perhaps only someone who knew my mother before would have seen the difference. She was, however, still fully conscious, and still panicking and saying “I can’t breathe” and “Help me.”

I asked her again about going to the hospital, and she refused. I told her she was very, very sick.

She asked if she might die. I said yes. When? No one knew.

She seemed genuinely surprised by this. Here she was, 6 weeks shy of 86, completely bedridden and disabled, was refusing food and water, not urinating and didn’t think she could breathe — and yet she was surprised.

I asked if she wanted me to make any calls so she could talk. No. The TV had been off for a few days now, and we were down to her caregivers, me, and her.

She said she was scared. I said what of. She looked at me like I was a total fool, and said, “Dying, of course.” She agreed when I offered to call a chaplain.

The rallying that was so dramatic with my father took a different form with my mom. My mom was exceptionally determined. She had strong opinions, and this blog is named after a phrase of her that could strike fear in those on her list (I’m going to have a little talk with him. . .”) while spectators would get the popcorn popping and wait for the fireworks. She was also pretty good at denial.

When my daughter and her boyfriend came by, she brightened up; she loved visits from my daughter. But after ten minutes, my mom told the two to get along with their evening and go out and enjoy themselves, that she had no intention of dying that night and that she would see them tomorrow. And the next day. And the next.

She tried the same with me, and I went outside to make some calls. Coming back in, I encountered the Perfect Daughter, there five days out of seven, who told me my mom bragged that she had “sent them all away.”

That was the last liveliness I saw from her. The night went on. There was no more conversation, just  “I can’t breathe” and “Help me,” and me watching the clock for when she could have more morphine. The intervals were less, the dosages greater.

My mother died around 9 am Thursday morning. I was not there. She was still conscious when my husband arrived to take over, and she was worried about me.

I was in the hospital waiting for an upper endoscopy.

Midnight I had gone to get the meds nurse; she had delivered the shot, and I was feeling a bit woozy, but blamed it on tiredness and stress and leaned my head against my mom’s railing. The next thing I knew, I was looking down on myself, and I was covered in blood, the chair was covered in blood, and there was a pool at my feet.

My mother was crying out,  “I can’t breathe. . . Help me.”

I had to tell her I could not, that I needed her to press the call button. She couldn’t. So I staggered into the hallway and yelled for help.

That was the last I saw of my mother, and the last she saw of me.

I had had my thirteenth portal hypertension upper GI bleed at her deathbed.

Bleed 11, An Exploratory Endoscopy, Bleed 12, Injectafer Again

My trials with gastrointestinal bleeds continue. Simply go straight up and click Primary Biliary Cirrhosis or Portal Hypertension Bleeds if you are a late arrival to this wearisome party. At this point I think I keep chronicling them so I can remember myself, have I had 11 bleeds or 12? How many transfusions so far?

The Halloween Bleed 2014

Halloween selfie

I was trundling down the tracks uneventfully — how lovely an uneventful life can sometimes be — when I derailed on October 28, 2014. I started with melena, and so my husband drove me to the ER; I knew from the metallic taste in my mouth the upper GI bit would begin soon.

Now every bleed has its moments, and this was during the Ebola scare. I thought I could perform a useful service to the Ebola response team every US hospital was throwing together last fall, so I told the triage nurse that within minutes, probably no more than an hour, I would be throwing up blood. She stopped me. Had I been to Africa or been around anyone who had? No and no. However, I continued, since I posed no infectious risk, I was the ideal test: get a team suited up, handle me as though my emesis had an unknown cause, and see how well they did with avoiding getting any bloody vomit on exposed skin. She scurried away and passed me to a different waiting room for labs.

The tech just about had time to get the needle in when up came the red blood, a good bowl full (I had brought my own bowl). We were crammed in a tiny room where another nurse was charting. The two looked horrified. I said, I told triage this would happen.

On a scale of 1 to 5, with 5 being worst yet (the first, early August 2010), this bleed ranked about a 2, and only because it was both a melena and emesis event. I didn’t need transfusing. The Injectafer iron infusions I had had back in April stood me well.

But then I made a mistake. After each upper GI bleed, the GI on call for the practice that has a monopoly in this town does an endoscopy to ostensibly find the source of the bleed. Since these scopes occur on average 18 – 22 hours after the bleed, and since in the meantime I have received bags of IV octreotide that stop GI bleeding, these are really Cover Their Asses exercises so they don’t discharge me with an active bleed. They have never once found the source of the bleed. Once you stop a bleed in the GI tract and it has had time to clot, chances of finding it are too small to bother with.

Back to the mistake, and the second memorable moment. The GI visited my room and said, while he didn’t think he had found the source of this bleed, he did find some oddity. “I stared at it for a long time.” This was what he had to say about the oddity he decided to call an ulcer and to put a clip on (another scar!) even though he said it was in an odd place, wasn’t bleeding, and wasn’t the color or shape expected. But to answer my questions he repeated, “as I said, I stared at it for a long time.” (How very reassuring!) He wanted to stare at it again in 3 months.

And like a fool, like an idiot, I foolishly, idiotically agreed to return February 3, 2015, so he could stare at it again.

February 3, 2015: The Exploratory Scope

So in I go as an outpatient, in fine fettle. Hg on January 21 of 13.1. Very respectable.

And the mysterious it? Vanished. The doc found the usual Cameron’s Erosions. I had a look at the pictures from his scope, and said, well, guess I’ll be back here soon. He said, on the contrary, all looked fine, no banding needed.

February 12, 2015. Bleed the Twelfth.

Nine days after the unremarkable exploratory I was in the ER again. This was a major bleed. On my new, devising as I go along, scale of 1-5, I’d say maybe a 4.0 to 4.5 based on projectile emesis and brief loss of consciousness. I still haven’t seen the stair stretcher or whatever it is the EMTs use (when I’ve needed it, I’ve been too far gone to see it).

My biggest fans will know two things seem familiar here. One is the date. A year ago, Feb. 12, 2014, I had had a bleed on the first anniversary of my collie’s death. Now it was the second anniversary. Rascal bled out, by the way. Undiagnosed tumors burst on his spleen. Well, that is just coincidental gothic bad luck.

But I’m not so sure about the other coincidence. The last time I had an exploratory scope in this city, I had a bleed about 64 hours later. 

That’s it. All done. I will have exploratories at University of Alabama-Birmingham (med school) Kirklin Clinic, but not here.

And I may refuse any post-bleed scopes here as well. But that is a story not yet completed. For now let’s leave it at this: February 3, 2015, as an outpatient in good heath I had Managed Anesthesia Care (meaning a nurse anesthetist is present throughout the procedure). On February 13, 2015, as an in-patient who had lost an estimated 3 – 4 units of blood less than 24 hours previously, I did not.

Back to the Injectafer Infusions

I left the hospital after Bleed 12 with a hg of 9.1. I had not been transfused. Two weeks later my hg had dropped to 8.7, and so I had my iron reserves checked:   My iron was at 28, % saturation 6, and ferritin 4. So the hematologist this time ordered two sets of Injectafer (4 infusions).

I should feel better by April 10.

At least I am now caught up on chronicling my crises.injec

Injectafer infusion

How It Feels to Have an Injectafer Iron Infusion

The usual caveats about this not be medical advice, etc. all apply to the following. My purpose in writing this post is to provide something I couldn’t find when I was scheduled for and after I had an Injectafer iron infusion last April: a personal account. There are a number of resources for studies of Injectafer’s safety and effectiveness, but that is not all I want to know.

Injectafer was approved by the FDA in July 2013, so it is fairly new. My understanding is that the older types of iron infusions are a lot more problematic, side effects were more common, and it took hours to receive the infusion. But I have no experience with that.

If you are here, you probably already know that delivering iron through an IV is an alternative when oral iron supplements haven’t worked in alleviating iron deficiency anemia.

Followers of this blog will know that, as a consequence of primary biliary cirrhosis and portal hypertension, I have had 10 gastric bleeds from burst varices and 17 transfusions since August 2010. The past (nearly) 14 months have been good ones, with only a single 2-transfusion bleed in February 2014.

However, in spite of the 2 transfusions, I continued to feel run down and fatigued. For one thing, although the normal hemoglobin range is 12 to 15 (or 11.7-15.5. or 11.3-15.2 — depending on the lab; I have results from 3 labs here), transfusions after a blood loss, which usually adds about 1 point to the score per transfusion (or so I think — again, an ordinary person’s understanding and not a hematologist’s is all you are getting here) are usually stopped once the patient gets into the 10s. One reason is that with every transfusion, the possibility of having a reaction to the next is more likely. Another is that usually the patient’s body will bring itself up to normal levels in a few weeks either through diet alone or with iron tabs.

The first of April, about 6 weeks after my 2 February transfusions, I had my labs done and my hg was 9.7. I can cope in the high 9’s, but coping is about all. Basically, being anemic means being oxygen deprived. If you want a similar experience, go hiking at sea level for a few hours, and then go above 12,000 feet and do the same. In another couple of weeks I had crept up to 10.5 on the 12 -15 scale; better, but not great. My family doctor sent me to a hematologist. My iron level  was 31; normal is 40-160. Two Injectafer infusions were scheduled for a weak apart for early May.

Hematology and oncology go together, and I know that since I don’t have cancer I should have nothing to say about this other than how grateful I am. But the truth is, it is really a sad and sobering experience to have to go to an oncology infusion center. Most people are there for chemo. Of course I knew I was the lucky one in the room, but you know, it is still depressing. In fact, I think the worst part of the whole process was when I was waiting to schedule my little infusions and the man ahead of me broke down crying at the desk. The doctor came out and said this time it wouldn’t be so bad. It didn’t help much.

Getting the infusions was quick. Each took about 20 minutes for the little bag to drain into my veins. It hurt a bit, but not badly; it’s an IV and those are rarely for me painfree. The iron looks like you might expect — brownish with a bit of red.

I thought the infusion would have immediate effects, that I would leave the building infused with energy.

It does not work that way.

Most surprising was that I actually felt worse for several days after the first infusion. I felt like I had been run over by a steamroller that had then backed up and done it again. I felt like I had reached the end of hope, that for the rest of my life I would never again have energy.

When I mentioned this to my hepatologist in September, he said he had heard this from others, so it is not just me. The thinking is that any time the body is hit with a sudden infusion of something it has never had before — like a load of iron all at once — it is going to have to process it, get used to the idea, make some internal adjustments, and that is fatiguing,

I didn’t feel much of anything after the second.

But about a week later, I  noticed that I wasn’t dragging around so forlornly.

After another week, I stopped eating ice.

A Connoisseur of Ice

I used to eat ice all the time. I mean it, all the time. In the middle of the night I would awaken to eat ice. Simply sipping water wasn’t enough; I’d have to go to the freezer for ice. I’d never leave home without at least one tall glass full. When I traveled I carried a small ice chest, full of ice. I decided I would probably not ever enjoy going to Europe again because I remembered the one time I went to the UK, 35 years ago, getting ice was hard, and I simply liked it then. I had my favorite source of ice: Sonic. One of the things that made hospital stays tolerable was that hospitals have good ice. The only thing I missed when I moved a few years ago was the crushed ice dispenser on my fridge door. I craved ice.

Then I didn’t. I still am thirsty all the time because I have Sjorgen’s syndrome which means my salivary glands are also under attack by my immune system, so my mouth is always dry, and my teeth have gone to hell, but I don’t eat ice. I drink fluids.

Eating ice is a pica — the consumption of non-nutritional substances, like chalk, soil, or sand as well as ice. Frankly, for an anemic, it seems it would make more sense to crave soil, but I’m glad it doesn’t, and of course, talking what makes more sense among things that don’t make sense is senseless itself.

But no one knows why people with anemia crave ice.

My Normal hg

On June 2 had an hg of 13.9, up from the 9.7 hg of April 2: a significant improvement, and my iron reserves zoomed from 31 to 163 at the end of August. So now I have stored iron with which to make new red blood cells. On 9/11 my hg was 13.6.

So my experience with Injectafer: excellent.

I wish I had known it would take weeks to work and I’d actually feel worse for a while after the first infusion, but now, if you are wondering what to expect, you have one report from the field.

Why I’m Cross with Ian McEwan

I’ve read all of Ian McEwan’s novels from The Cement Garden (1978),  but I am frustrated and annoyed by The Children’s Act, his latest.

Briefly, the novel is about a period of crisis in the life of a high court judge, Fiona Mayes, who is emotionally exhausted from her collapsing marriage and the stress of making life and death decisions in family court. Then she receives the case of Adam Henry, a 17-year-old suffering from leukemia whose parents have refused to grant permission for him to receive blood transfusions, and to complicate matters, the patient himself has said that he will not go against the dictates of his Jehovah’s Witness church.

To prepare the reader for this central episode, McEwan develops Mayes’ character by reviewing her thoughts on several other judgments she has found difficult. These cases, used to develop a fictional character, are based on actual rulings evoking the Children’s Act of 1989, which orders that in any court action pertaining to a child, “the child’s welfare shall be the court’s paramount consideration.”

McEwan has discussed the factual rulings for his novel’s cases regarding conjoined twins, a mother falsely accused of murder in her infant’ crib deaths, conflicts between ex-spouses over the religious upbringing of their children, and even a case of a teenage Jehovah’s Witness who needed and wished to refuse a blood transfusion. The first two chapters are what I’ll call factional — at least as much fact as fiction.

I have no problem with this. But in the third of the novel’s six chapters, McEwan abandons factual fiction for fantasy, and the departure is abrupt, bizarre, and structurally and thematically unjustifiable.

After hearing testimony in the matter of Adam Henry, Judge Mayes decides to stop proceedings while she goes to his hospital room to visit with the boy.

The problems begin as soon as Fiona and the social worker after taking cabs through London enter Adam’s ICU room. Do they first scrub their hands? Put on protective masks? Gowns and booties? I’d think they would, not of course to protect themselves from his cancer, but out of concern for his steadily weakening immune system. That morning in court his doctor testified he had a white blood count of 1.7 (the normal range is 5 -9).

Adam looks pale and wan, and is short of breath. Otherwise, he hardly seems like the person described in court who was diagnosed  with leukemia after two days of “unbearable” sharp stomach pains, which began in mid-May (this scene is set in mid-June). There is no sense that he is still in any pain. The leukemia is not being adequately treated, so why is the pain gone? He certainly does not reason and act like a person on painkillers would, especially not on those that would alleviate “unbearaable” pain.

What impresses Fiona first is that Adam is surrounded by “life support and monitoring equipment” as well as “books, pamphlets, a violin bow, a laptop, headphones, orange peel, sweet wrappers, a box of tissues, a sock, a notebook, and many lined pages covered in writing. Ordinary teenage squalor, familiar to her from family visits.”

Ordinary teenage squalor? In the ICU? Really?

What else do we know of Adam’s medical history? Early that afternoon, his doctor reported that when Adam was admitted to the hospital, his hemoglobin was 8.3. Three days prior to the court hearing, it was 6.4, and that morning it was 4.5. The doctor added that if it dropped to 3, “the situation would be extremely dangerous.”

What’s normal for a 17 yr old boy? Between 13.8 and 17.2 g/dL, according to the World Health Organization. So if his hemoglobin had dropped another half point over the course of the day, his organs are receiving one-third of the oxygen they should. That is what hemoglobin does; it carries oxygen.  I think it safe to say he passed into the extremely dangerous category some time ago. Usually a transfusion is ordered when the hg drops into the 8’s, and while a gradual loss of hg might be easier for the body to adjust to than a sudden bleed from an accident, remember that not only is Adam extremely anemic, he has cancer.

Now, I find it very hard to believe that someone with an hg below 8 or 7 or 6 is going to be composing poetry and suffering no more problems than occasional shortness of breath.

But it’s the final moments of Fiona’s visit with Adam that had me banging my head. Since he became ill and as the anemia began to steadily worsen, Adam has been teaching himself to play the violin.

So this boy with less than a 4.5 hg plays his guest a piece, and Fiona starts singing along to “The Salley Cardens.” But wait, there’s more. They do a second take, and on Fiona’s instruction, Adam flawlessly changes key, now playing C sharps.

When the body is starved of oxygen, the brain is starved of oxygen. Confusion is a big problem for as long as the patient retains consciousness. The oxygen afforded the brain is going to be used for the most critical funtions of survival. Getting the C#s right in a violin piece is not a critical neurological function.

It’s an absurd and ridiculous scene, and it is the central one of the novel. If all leading up to it hadn’t been so fact-based, maybe it wouldn’t have been so jarring. If McEwan had waffled about the bloodwork, calling Adam simply seriously anemic rather than including specific real-world based numbers, it wouldn’t have seemed as preposterous a scene.

Why then? Why go through all the medical testimony regarding Adam’s labs and then present him in a way that does not reflect the implications of the facts presentd? I can see no thematic reason for this sudden departure into fantasy.

A failure of fact, a failure of faction, a failure of fiction.

The Guardian called A Children’s Act “a masterly balance between research and imagination.”

I call it inane.

Always Bleeding from the Same Scar: Bleeds 9 and 10

There’s a new series of posts I am planning, but first I need to catch up on my bloody misfortunes. It’s been a year since my last post on a bleed, caused by portal hypertension, in turn itself caused by damage to the liver, in turn caused by my autoimmune illness, primary biliary cirrhosis. But I have had two since then, and am now up to 17 transfusions.

First, let me say something about these transfusions. I wouldn’t be here tonight if it weren’t for people who give blood. Sometimes when I’m wandering around, I ask myself: was it her? Or him? Whose blood is in my body? I cannot know, but I thank anyone who has ever given — or even just tried to give — blood. These are rare and strong and generous people.

Back to these bleeds. Number 9 hit in September, when I was in Miami, trying to help my 84-year-old mother, and was a 2-transfusion bleed, as was bleed 10, that waited until February, less than a month after I moved my mother out of Miami. This one occurred a year to the day after my beloved collie died of hemangiosarcoma, a canine cancer that causes sarcoma to develop. Mine was on my dog’s spleen. It ruptured, and he bled out.  

The doctor who performed the endoscopy here couldn’t find the source of the bleed.

But a month later when I went to see my hepatologist at University of Alabama’s Kirklin Clinic, he found an actively bleeding varix at the fundus, where the stomach and esophagus meet. The site of multiple bleeds of mine has been at that little crook to the left of where the arrow is pointing.

File:Illu stomach2.jpg

In fact, this is the same site as my first — and still worst — bleed, the one that that the GI who saw me in the ER thought to be a bleeding ulcer and that for a while my hepatologist thought might be a Dieulafoy’s Lesion or a Cameron’s Erosion.

But after reviewing my records, now the theory is that the same area keeps bleeding because it was weakened by the three clips (like tiny clothes pins) put in as an emergency approach to shutting down the 4-transfusion bleed I wrote about back in August 2010.

Banding, essentially using the equivalents of rubber bands, to cut off the supply of blood to a bleeding varix or one that looks like it could become a bleeder, is the preferred approach.

The clips are a last resort.

The reason I keep having these bleeds may then be because the delicate walls of the esophagus have been compromised by the clips.

One thing others with primary biliary cirrhosis should know is that having these bleeds is extraordinarily unusual. I asked my hepatologist if other PBC’ers have similar problems with repeated bleeds, and he said, no, he has never seen or read of a comparable case.

I think then that it is best we end with the inspiration for the title of this post: David Bowie’s “Always Crashing in the Same Car.”

 

 

Mental Health Emergency Services for Teens: What to Do When Your Community Fails You

It’s been months since my last post. I don’t like to give advice. Provide information and resources, sure. But giving advice about a life and death matter — that worries me. But maybe not giving advice is equally risky, so here goes.

Say you are in a town like Huntsville, Alabama, where the hospital, in spite of being the only hospital of any size for a 100 miles, and in spite of having a separate facility for women and children, and in spite of being an aggressive investor buying up other hospitals, hasn’t a single bed for a child or teen in need of emergency psychiatric intervention. What do you do?

1. You can hope that the situation at Decatur Morgan Hospital West Campus (formerly Decatur General Behavior Medicine Center) over in Morgan County where Huntsville Hospital ships its psychiatric cases that come in through the Women’s and Children’s ER (and where those ordered by the Courts for psych evaluation land) has improved. See my previous post.

Chances are good that your teen will be returned to you alive, and that is what matters most. Maybe he or she will be scared sane.

But what worries me about a teen’s first encounter with psychiatric treatment being negative is that he will never admit to being in need of help again and if he (or more likely when) he becomes suicidal again, he will make sure to choose a technique that will keep him out of such a place, one where the severely depressed are mixed in with the seriously aggressive and cut off from family and friends in a facility that is run like a detention center with little medical oversight.

2. Leave town. This is the best thing you can do, I think. First, immediately. Later, permanently.

Before you get into a crisis, check out your options. Start with teaching hospitals.

If you are in Huntsville, Alabama, you have at least two options within 100 miles (about 90 minutes): Go first to these hospitals’ ER.

How does going to a real psychiatric hospital compare to going to a freestanding quasi-detention center?

At Vanderbilt’s program,

  • You can get immediate referrals and prompt evaluations for neurological assessments. There’s a lot of similarities in symptoms of conditions like Post Traumatic Stress Disorder (PTSD) and Post-Concussive Syndrome. If your teen’s suicidality followed a violent attack, you need to consider such possibilities.
  • Your child sees a psychiatrist daily. You visit with the psychiatrist at the beginning and end of the child’s stay. The psychiatrist returns your phone calls. In other words, you have actual contact with the person treating your child.
  • You can visit your child every day, on the ward, in his or her room or common area if the roommate’s folks are there, for an hour in the evening, and two hours (one morning, one afternoon) on weekends. You see where your child is living. You meet the nurses and the techs.
  • You can have telephone contact with your child whenever you want. Or she/he can ask to call you.
  • A social worker is also involved to support the psychiatrist and to help the families, especially with aftercare. You leave with an appointment set up for continuing psychiatric, neurological, and/or therapeutic care that is timely. (In contrast, expect about a month’s delay between release and your child’s first follow-up, if you have to deal with a place like Decatur Morgan Hospital West Campus.)
  • Your child may not like separation from cell phone and social media (or maybe he/she will: no pressure for a while) and confinement, but chances are your child won’t emerge determined never again to seek psychiatric help.

3. Don’t assume, however, that if you don’t live near a teaching hospital, you are sunk.

Consider, for example, Asheville, NC. Its Mission Hospital has inpatient adolescent psychiatric services.

  • Huntsville’s population is 182,956 people; the metro population of the five North Alabama counties making up its Combined Statistical Area is 430,734.
  • Asheville has about a 100,000 fewer people:  83,393.  Asheville’s metro area includes 4 counties; population, 424,858.

A question of priorities, I suppose.

 

Getting a suicidal person of any age a week’s stay in a psych hospital isn’t going to fix him or her forever.

The best you can hope for is that your child is

  • safe long enough for the suicidal urge to pass
  • learns some coping skills
  • gains some insight into why he/she considered dying
  • isn’t scared away from seeking help again
  • gets very timely appointments with professional who will provide the support needed.

I got into this subject following the suicide of Christian Adamek (see previous post). His father is following through with his commitment to honoring his son’s life by promoting a conversation about means of improving mental health care, including “immediate access to care in the form of assessment, diagnosis, treatment and monitoring” by establishing a nonprofit organization, Little Orange Fish. There’s not much on the website yet, but there is a way to sign up for updates.

I look forward to the discussions Little Orange Fish will facilitate.

 

About Mental Health Emergency Services for Teens

While this post may seem to have most relevance for the parents of North Alabama, I think, sadly, the subject is hardly unique to this area, state, or region of the US.

Daniel Adamek, the father of the 15-year-old boy who streaked at a football game in late September and less than a week later committed suicide, held a press conference today in Huntsville, Alabama, to say that focusing on the events immediately preceding his son Christian’s death (likely “facing expulsion” and “legal complications,” as his principal announced on TV the night before the boy acted) “is a distraction from addressing the real problems.” He explained:

“We had been struggling for some time to get Christian through the pain of depression. The real issue here is why we could’t get the medical help he needed despite following every avenue we could.”

In his heartrending address Daniel Adamek said too that

“I’m asking that we do NOT make this story about any specific events or Christian’s particular challenges because those were his and we can’t fix any of that now.”

He’d like, I think, for Christian’s experience — and his family’s — not to be one that is repeated again and again. Here is a father who tried all the ways he knew to help his child, and the help he needed was just not there.

Daniel Adamek didn’t elaborate on his pursuit of help; to have addressed a press conference and answered questions must have taken enormous strength. To go through the whole futile search up on the podium under the lights — no.

So I don’t know the details of his journey, but I can tell you about what well could be a similar path as the Adameks considered or took.

Imagine that you live in Huntsville, AL, a fairly good sized American city, and the largest within a 100 mile radius.

ImageYour teen is very depressed, is talking seriously about killing himself, or perhaps you have even interrupted an attempt. This is an emergency, right? What would you do?

You couldn’t be faulted for taking your child to the Emergency Room of your local hospital, and the only hospital of any size for 100 miles in any direction, Huntsville Hospital for Women and Children.

You wouldn’t be unreasonable if you expected a Children’s Hospital to have a pediatric or an adolescent psychiatric ward. You would probably expect for there to be a pediatric or adolescent psychiatrist on call for the ER, too.

And you would be wrong and wrong again.

There is not a single psychiatric bed for a minor in Huntsville Hospital.

There is no pediatric or adolescent psychiatrist on staff.

So what happens?

A social worker is called in or a low-level intake counselor for Decatur Morgan Hospital West Campus (formerly Decatur General Behavior Medicine Center) over in Morgan county, Note, this is not a hospital. This is not even attached to a hospital, and is some 15 minutes away from the main hospital in Decatur.

There is not an MD on duty 24/7. The psychiatrist is a part-timer.

If your child is over 14 or 15, he has to voluntarily commit himself (unless he lands in the ER following a suicide attempt. Then he has the option of signing himself in, but if he doesn’t comply, an involuntary commitment will be sought by the hospital). Interestingly, although it is the teen who signs himself in as a voluntary patient, he can’t summon an administrator and sign himself out (and if he asks to, this will be a black mark on his chart).

If you decide to take the ER’s advice and have your child delivered to Decatur (and he will be transported by ambulance) sight unseen, what can you then expect?

He will be in a secure ward as long as your insurance benefits hold out.

You won’t see him or hear from him until after a family meeting with a social worker, so try not to have a crisis on a Friday.

Once you turn him over to the intake crew, you’re done. You won’t see his room or meet the nurses or techs directly involved in his care.

You’ll talk by phone with the psychiatrist for a few minutes once, maybe twice, but you will never meet him.

Twice a week you will be able to visit for an hour.

If he doesn’t break any rules, he will be able to call you for 5 minutes each night from the nursing station where there is no privacy.

When your child is released, you can expect perhaps a 3-week delay until his first follow-up appointment with a psychiatrist, assuming that the staff has managed to find one taking new patients on your insurance.

Adolescent psychiatrists are thin on the ground in Huntsville.

Later when your depressed child gets home, you will hear that there were some other kids in the place who were also depressed, but there will also have been a number there with serious anger management issues, many under court order. Your child will be able to describe for you various take-down techniques. You will hear about under-supervised, poorly trained techs who are in charge during the evenings and weekends.

But, yes, your child will be released to you alive. What will happen next is anyone’s guess. Maybe the oppressiveness will have a Scared Sane effect. Maybe your teen will come out vowing that the next time he considers suicide he’ll keep his plans well hidden, or the next time he attempts suicide, he will make damn sure he succeeds so he doesn’t end up in what amounts to little more than a detention center.

I think what Daniel Adamek wants us to know is that we don’t know what we don’t know.

After all, who among us gives thought to preparing ourselves for where we will go and what to expect if our child has a mental health crisis?

 

About a 15-year-old’s Suicide and a Principal’s Grandstanding

Usually when teenagers kill themselves, people react with incredulity. Not in the case of 15-year-old Christian Adamek of Madison, Alabama, a suburb of Huntsville, AL.

Here’s what happened, at least as much as is publicly known at this point. On September 27, Adamek streaked across the field during a high school football game. Even this much is in some dispute. I read one comment that said he had a sock on over his privates that came off when he tried climbing a fence at the end of the so-called streak. Today I read another that claims he was wearing boxer shorts, which means this was no streak at all.

It’s unlikely that the mainstream media will clear this up. Now, they have clamped their mouths shut. Such wasn’t the case while Adamek was alive, however. More on that later.

It’s not entirely clear to me whether Adamek was arrested that night. If he had been, then there would have been no reason for school “administrators [recommending] that Adamek have a hearing in the Madison County court system to determine if formal charges would be filed,” as television station WHNT reported, since such a hearing would follow an arrest whether the principal asked for one or not.

There’s always a strong police presence at football games, so if the police didn’t think what happened required an immediate response, why did Sparkman High Principal Michael Campbell take it upon himself to speak as if he intended to criminalize the act?  It has been suggested that this was all about scare tactics, but why go on camera if there was never the intention to follow through? Was this Campbell’s “prank”?

By Tuesday, Adamek was no longer in school, and his sister tweeted he was “facing expulsion.” Not suspension, mind you, but expulsion, which means permanently kicked out of his school. Since the school-leaving age in Alabama is 17, he would have ended up at some rough alternative school, I expect. True, he hadn’t yet had his expulsion hearing, but principals usually get their way.

So academic future, chance of getting into most colleges: gone. Next few years of schooling: hell.

You might think that as extreme as that course of action seems, it would have satisfied Sparkman High School’s Assistant Principals and Principal Michael Campbell’s desire for— well, what exactly? And again, Campbell may have been acting in concert with the School’s vice-principals, but he is the principal. Shielding his underlings from criticism and taking all the heat himself may seem an act of valor, but if the most vigorous instigators of this scare campaign are shielded, how does this help students? If the others in the Sparkman administration aren’t willing to come forward individually and say, hey, it wasn’t Campbell acting alone: I put the pressure on Campbell to go to the press, then do any or all of them have the integrity and character to influence students?

Did Adamek realize that his brief run down the field would end his days as an ordinary high school student? I doubt it. Streaking doesn’t appear on the list of 72 offenses (58 of which are in the top tier, level 3) in the Madison County Schools Code of Conduct. A more savvy kid might have realized that he could be charged with S11 Disorderly Conduct, or the ever-useful S58 Other Incidents (also on this level are, for comparison, S21 Homicide, S23 Kidnapping, S34 Tobacco Use and S16 Electronic Pagers. Go figure.). He probably wouldn’t have been surprised to have been beaten by the principal on Monday morning, since Madison County Schools still use corporal punishment.

But he probably wouldn’t have expected to have to worry about  S30, Sexual Offenses.

Kids, please, please, if you want to fight or streak, don’t do it at school or a school event. Do it anywhere but. Why? Because if you get in trouble at school, your principal can call in the law. If you do it elsewhere, the law is not likely to call in your principal.*

This seems like a kind of double jeopardy to me.

Adamek realized he would likely be expelled. Then Tuesday night, Principal Michael Campbell announced on the evening news that the boy “faced legal charges” and that “the incident was much more than a mere prank. ‘This situation was totally different, something not related to that at all.’”

What did that last sentence mean? Now that Campbell has shut up, we’ll never know. It seemed to me that he was trying to make a harmless, victimless crime — if in fact it was any crime at all — into something far more sinister.

The “legal complications”? Campbell mentioned “public lewdness”; another possibility would have been “indecent exposure, the latter of which is tied to Alabama’s sex offender laws.”

Now this is where Adamek’s situation really became dire. If he had beat someone senseless as a 15-year-old, and been judged delinquent, once he reached 18, he could have sought to have his juvenile record sealed. It doesn’t work that way with sexual offender status. In Alabama, the law “requires adult sex offenders to remain in the state sex offender registry for life but makes exceptions for some younger offenders.” Some youthful offenders may then not be on the register for life, but for exactly how long is vague.

And it was possible that Adamek could have faced time in the juvenile detention center. Most  (83%) in Madison County’s in 2008 committed non-violent crimes, by the way. Now, it might not be true, but anyone in America knows what is commonly believed about incarceration of males: rape is widespread, and sex offenders are considered the lowest of the low.

By Thursday Christian Adamek was dead.

To recap: we have a 15-year-old kid who it doesn’t appear was anything like streetwise or vaguely knowledgeable about the [so-called] justice system who runs down the sidelines during a football game either naked or in his boxers or somewhere in between.

His principal Michael Campbell and the administrators at Sparkman do the worst they can in the academic arena: starting expulsion proceedings. Then Campbell goes on TV to make sure that his intentions to pressure the DA’s Office to make the kid’s life a long-lasting legal hell are publicly known.

Some teenagers choose to break the law and commit violent crimes. It is hard to have much sympathy for them if they despair over the consequences. And catastrophically bad things happen to teenagers: serious illness, causing accidents, being the victims of accidents, being the victims of crime. Even for those who are at the wheel when a serious accident occurs, an accident, is after all, an accident.

Christian Adamek fell into a weird category: yes, he acted intentionally. But surely he had no clue what the fall-out would be. He engaged in a juvenile act. He was, after all, a juvenile. He was supposed to have had chances to learn about the world.

Principal Michael Campbell acted intentionally too. The similarities end there. He is an adult. He is an adult who is responsible for the education and safety of his students. He is expected to use good judgment. He is supposed to know a little bit at least about the impulsive behavior of teenagers. He might be expected to understand their ignorance of the legal system, to be able to grasp that a 15 year-old might not make the connection between streaking (or sort of streaking) at a football game and ending up on the Sex Offender Registry (how many adults would?). Surely he’d be expected not to talk to the press about a specific case at his school, knowing fully well that due to social media, Christian’s identity was widely known already and his and the mainstream’s media not naming Christian was an adherence to formality and irrelevant in practice.

I doubt that Campbell and his colleagues committed an actual “crime.” Even if they did, trust me, the Madison County AL DA wouldn’t bother with the case.  No, all Campbell did was act with such abysmally poor judgment that he made of a trivial non-event a matter of life-and-death. Literally.

Why? What could have motivated such idiocy? Well, allow me to speculate a bit here and give you some history on the man. Superintendent Col. Casey Wardynski and the Huntsville Board of Education paid $22,000 to a consultant to find them two principals. Campbell was one; he came from Fairfax, VA, a favorite stomping ground of the Colonel, and was hired to lead Johnson High, a school “labeled as ‘failing’ under state standards” at a salary of $102,596. He arrived in fall 2012 and by April 2013 had found his way to greener (or make that whiter) pastures at Sparkman, failing to raise Johnson from its failing status, and feeling, it appears, no compunction about having wasted the money City of Huntsville taxpayers spent on his recruitment. While I can’t say I blame hime for wanting to get out of the Huntsville CIty Schools, he should have looked into the situation he was getting himself into before accepting the job.

OK, so now he is lord of his new universe, and then this kid streaks a football game. Time to show all the world that there’s a new sheriff in town, a Real Man, a Tough Guy, who won’t let HIS kingdom be besmirched by some juvenile hijinks.

In a just world, Campbell would be fired and banned from ever having a position of authority over any child. If he isn’t responsible, then let him speak for himself. He had enough to say before Christian died.

I doubt he has anything to worry about. Not a thing.

____________

*Case in point and a study in comparative justice: Not far from Sparkman High, when one 15-year-old beat another senseless at his home, the Huntsville City school both attended was indifferent. Even though the perp admitted hitting his victim to a school counselor, that counselor couldn’t even bother returning  calls from the Assistant DA. Nor did his principal.
This same perp posted a picture of himself with his pants below his knees at an open air shopping center on a Saturday afternoon while on probation. The head probationary officer for juveniles in Madison County was indifferent, noting that the terms of his probation did not prohibit dropping his drawers in public, and besides, you see that kind of thing on TV all the time.
And when that perp turned 18, he could petition to have his record sealed.
In other words, if Christian Adamek had stayed home from that football game and instead slapped, head-butted, strangled and banged his girlfriend’s head against the wall multiple times, he would have been a whole lot better off  legally, his academic situation unaffected, and likely he would have been alive today.

The Sixteenth Street Baptist Church Bombing: Introducing longtimecoming1963.wordpress

In two months much will be said about the fiftieth anniversary of the bombing of the Sixteenth Street Baptist Church in Birmingham, Alabama, which killed four girls as they prepared for church services on Sunday morning, September 15, 1963. Dozens of others in the church that morning were injured, including Sarah Collins, sister of one of the victims, who spent over a year in hospital. She’s been forgotten. So have two other black children killed that day: James Ware and Johnny Robinson. Who remembers them?

The deaths of these girls brought international attention to Birmingham and to the depravity, cruelty, and evil of those eager to kill rather than see extended to blacks the civil rights granted — at least on paper — by the Constitution.

Would their deaths still be remembered if the girls had been killed in a bombing at a roller rink the previous night? Or if it had been four deacons killed rather than four children? Who knows?

But in setting a bomb to detonate in a church on a Sunday and by killing four girls, the bombers broke two taboos: you don’t bomb churches on Sunday mornings and you don’t kill girl children.

What will be remembered this fall, I expect, is the worldwide outrage at this atrocity. What will be forgotten is the aftermath.

Four girls are murdered in an American church. What response would be expected other than for local, State, and National law enforcement and the citizenry to demand that the murderers be identified, prosecuted competently, and punished appropriately?

This didn’t happen. It could have happened in 1963, but the first conviction of one of the four men who executed the attack did not happen for 14 years, in 1977. Two others were convicted in 2001, 24 years after the first and 38 years after the crime.
How? Why?

What kind of society does not even bring to trial those who kill children?

As early as October 1963, Elizabeth Cobbs was working with the FBI to build a case against  her uncle by marriage, Robert Chambliss. She knew what the Ku Klux Klan did to informers. She was a single mother of a young son, struggling to get by, and she cooperated fully with the authorities. After months of risking her life meeting with agents, J. Edgar Hoover dropped the case. She knew what had happened but could do nothing more.

Then in 1977 Alabama Attorney General Bill Baxley reopened the case, and to make a long story short, Elizabeth Cobbs’ testimony was finally heard in court and Robert Chambliss became the first man convicted for the bombing.

In 1994, Elizabeth H. Cobbs, now Petric J. Smith, published Long Time Coming: An Insider’s Story of the Birmingham Church Bombing That Rocked The World. It is out of print, its publisher defunct.

This is a story that shouldn’t be forgotten, and so Smith’s son and I have posted an electronic version of the text as a book blog here at WordPress: http://longtimecoming1963.wordpress.com/. It’s a story of the moral courage of one individual and the active participation of the powerful in sheltering those who were evil and who did evil things.

This spring President Obama awarded the Medal of Honor posthumously to the four girls killed. A great photo op, a nice symbolic gesture. But if he really wants to honor their memory, may I suggest he turn to the last chapter of Long Time Coming and choose any one of its questions about what happened in Birmingham, in Alabama, and in Washington DC in the months following September 15, 1963, and get to work on finding the answers and holding those responsible who chose not to do their jobs. A few are still alive. I guess there isn’t an equivalent opposite of a medal to be awarded posthumously to those who aided and abetted murderers.

By the way, in case you are wondering about the other two children killed in Birmingham on September 15, 1963, Cobbs/Smith can tell you:

During the afternoon two more black children died in other incidents in Birmingham: James Ware was shot on his bicycle by two white youths on a motorcycle, and Johnny Robinson was shot in the back by a policeman for throwing rocks at a car loaded with catcalling white youths displaying Confederate flags.

The juveniles who killed Ware were identified from photos taken at an NSRP rally that afternoon. One pleaded guilty to manslaughter; the other was convicted at trial. They each received seven-month suspended sentences.

Officer Jack Parker said he was firing at the feet of Johnny Robinson and his companion — with a shotgun — at 100 feet, and he was surprised when the youngster “appeared to stumble and fall.”

Sixteenth Street Baptist Church, Birmingham, Alabama

Credit: The George F. Landegger Collection of Alabama Photographs in Carol M. Highsmith’s America, Library of Congress, Prints and Photographs Division. [LC-DIG-highsm-05063]

The Wales Window, which was donated to the Sixteenth Street Baptist Church by the people of Wales to replace a window destroyed by the 1963 bombing of the church.

Cameron’s Erosion Erupts (Again): Bleed the Eighth

Update: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

Back when I first decided to write about having primary biliary cirrhosis in November 2009, I never figured that this would become my bloody blog. I have neglected the blog for months because if I am going to follow through with my plan to write an account of living with this auto-immune illness, then I have to, once again, post about another bleed. Each has its own special moments, however, and here I have two warnings for you, and a comment from my gastroenterologist.

Once again, as in bleed 7, the culprit was my Cameron’s Erosion (or Lesions), an ulcer “in the hiatal sac of patients with hiatal hernia,” which is how Wiipedia’s 2-line article describes the thing. You know you have a rare condition when Wikipedia has next to nothing. I described what I learned about Cameron’s after bleed 7.

The link to PBC is that because my liver is compromised by the disease, it is too dangerous to repair the hiatal hernia.

I’m getting better at identifying the onset of these bleeds, anyway. This time I even drove myself to the hospital. Signs were clear: black BM and the taste of iron in my mouth.

Now for the three things that made this bleed memorable, and some advice.

1. Do not let a doctor put in an IV. There is some incompatibility between all the things that I might need intravenously during a bleed, and so I end up with IVs in both arms. I had a great nurse in the ER who inserted the first IV as painlessly as I can remember. Then this doctor or resident drifted in. I could tell he hadn’t been on the job long — and thought he was God’s gift to the world — because he was wearing a V-neck scrub top that let me see way too much of his curly chest hair way too close up. He wanted a little practice with IVs, I guess. So he tried to start the second line. And failed, miserably. Blood spurting and me doing the vasovagal response — that is, fainting. Finally the nurse guided the doctor’s every move and the second IV was inserted.

She was a great nurse, and I asked her later, how do you stand that — doctors coming in and thinking they can do all you can, and you having to deal with the aftermath. Diplomatically, professionally, she responded that at least that doctor will think twice before he gets snippy when a nurse has trouble with an IV.

2. It hurts like hell to have your stomach pumped. And it’s worse when there’s no reason to do this. My bleeds sometimes have two parts: black stool and vomiting. The vomiting always happens, but when both occur, usually comes an hour or two later. This time, I got to the ER before I vomited. All that I needed was time, but for reasons best known to himself (and that itself is a problem), my ER doctor decided that instead of letting things take their course, he would pump the blood from my stomach.

Never again. I would have been better off sitting outside the doors of the ER until I threw up.

I always imagined stomach pumping would involve a tube down the throat, turning on the pump, and whoosh, all done.

It isn’t like that.

This is what it is like to have your stomach pumped: A tube is inserted up your nose and down your throat. If the first nostril tried gives the nurses trouble, then they start over with the second. They keep giving you water to drink so you swallow, and swallow down the tube. Maybe it was just me, maybe the tube was just lodged against a nerve, but it hurt like hell the entire time the tube was up my nose and down my throat. 

And the entire time isn’t a matter of minutes. It’s a matter of hours. The pumping is slow and not constant. You watch the content of your stomach (in my case, red blood followed by black) slowly proceed down this thin tube. Sometimes it starts flowing backwards. 

I supposed most who OD and have their stomachs pumped are out of it. I can’t imagine that anyone who has had it done would risk OD’ing twice. I was not out of it. Other than a local anesthetic sprayed in my throat, I had no recourse but to lie there in pain between 1 and 5:30 in the morning and watch my blow flow out of my stomach.

I talked to my floor nurses about this, and each said, you always have the right to refuse a procedure. And refuse I shall. 

3. Don’t go out during lightening storms. This was her advice when I asked my gastroenterologist how often people have both PBC varcies and Cameron’s lesions. First she suggested buying lottery tickets, and then backtracked, since having bad luck doesn’t mean having good luck too. (I spent an hour at the Harrahs in Cherokee last week and never once was ahead.)

Actually, her advice misses the mark. Not going out during lightening storms is an action I can take to avoid without fail being one of the rare people struck down.

But there is no way I can avoid without fail the next bleed.

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