Memories of Dad

I vividly remember this story, being immediately told about it by both parties soon afterward.

It’s hard to think of anything that captures dad’s personality better.

It is difficult to put into words the range of emotions I’ve experienced through this. Initially concern, then hope, then consternation, then despair. Eventually fury.

I feel great pain now, as an acquaintance of a great man lost and vicariously as a friend to his children.

Ideas of faith and justice and fairness fall apart at times like this. For some, there is solace in family or faith. For others, solace in solitude and reflection. For others, it is best to revisit the fond memories.

Your father was a kind, gentle man with a sharp mind, wit and zeal for life that refreshed those he met. I have told dozens of people who will never meet him the story of living on the beach and fighting wild dogs for his food and dealing with machete-wielding bus occupants.

Once, I called John to speak with him about some trivial matter at the apartment. Initially, however, I told him I was calling for legal help. I told him I’d run a bus full of nuns and children off the road. He said, “Aron, for a big enough retainer, I’ll make you a hero.”

He’ll be missed greatly, but you know that very well.

Thank you, Aaron, for the story. And my, and my family’s, appreciation to everyone who sent their thoughts, their prayers, their hopes, and their kind words.

An open letter to my father


When grandpa died, the funeral was happy. His last weeks were painful, but the sense of a happy-long life were everywhere. The funeral was more beautiful than you could dream: a wonderful summer day, cousins from everywhere, a minister who worked for him as a kid, and laughter.

Those aren’t here for you.

You were so happy with life. You were so healthy. You died too soon. The weather is miserable, cold, and lonely. Two of your brothers live in town, but the Upper Peninsula was always your true home.

I feel like a rope is around my neck. I just feel awful.

We were going through old pictures, and I couldn’t. Normally I much stronger with photographs than mom. But I couldn’t finish the task.

I haven’t been able to think. I can’t lose myself in my work, because I can’t concentrate enough to work.

But last night I was bursting with happiness. My girlfriend’s car was totaled. She was hit, from behind, by the rear wheels of a passing semi. A witness told her “you should be dead.” She escaped without one cut, one bruise, or one sore.

While driving to pick her up, “Picture of You” came on my ipod. The singer lost his father young, so I kept thinking of those pictures. Except for one verse which wasn’t about you. Which I thank God never described you at all.

From the moment I heard she was OK to the moment I began writing this, I was only happy. I am crying now, but that is alright. I’m so happy and so sad at the same time.

But as you told my brother, there’s no time for that talk now. This is what keeps running through my mine:

“I found a picture of you and me together”

“I was your child and you were still my father”

“I found a picture of you and you were younger”

“holding me up you were so much stronger”

“i found a picture of you”

“oh, and they were good times, weren’t they dad”

“when you were free and you were young”


“they were good times, until the corporate world
stole a father from his son”

Those are the lines that don’t describe you. You were professional, but you were not corporate. You were great at what you did, but you choose to be with us. The day before your heart attack, you and I were planning spring break on the phone, you and my brother were planning to travel the Oregon Trail, again, on the phone, and you and my sister were planning a summer vacation.

You loved us. We love you.

“i found a picture of you and you were smiling”

“after fifty long years you found the best of life was now”

“and you would never trade it in for anything”

“oh, and they were good times, weren’t they father”

“cause you were safe and you could rest”

“they were good times”

I miss you. I love you.

(Do you remember our secret? I told you when you were sleeping.)

Your son (always),


A long morning

At about 4:30 AM we received a call from the hospital that dad’s heartbeat had become erratic.

My mom went in immediately. I waited until 6, woke my sister, and brought us both in.

Around seven o’clock, a priest arrived from the Cathedral. He gave dad the Anointing of the Sick.

At 8:30 I went back to the house and returned with my girlfriend.

Noon saw a hospice nurse talk to. Unlike the neurologists and the intensive care nurses, who were consistently helpful, informative, caring, and nice, the hospice worker revealed neither competence, nor intelligence, nor honesty. Care which she described as “identical” turned out to be not at all identical (apparently in her mind, having a nurse check in every ten minutes and having a nurse check in every twenty-four hours comprise identical care). Likewise, her view on treatment of pain is too infuriating to write at this time.

Our meeting was interrupted, however, as dad’s heart rate became less stable. As we stood and sat around him, we told stories and spoke our love for him. While dad’s body failed, the “recovery” I have written about (I, II, III, IV, V) continued, and dad entered a persistent vegetative state. The space between breathes grew from twenty seconds, to thirty, to forty. (I counted.)

The clock reached one. It was two weeks to the minute since we spoke on the cell phone.

Then there was the last breath.

A different kind of care

The good news is that the behaviors we have been seeing over the past few days continued to grow. My dad abducts his shoulders more often and becomes agitated when we leave the room. His arms are as strong as they were before, and explore his tracheal tube. By all accounts, the recovery that was interrupted by morphine (because of his tracheotomy) has recovered the trajectory it was on.

The bad news is that we have not seen the sort of qualitative improvement we have been looking for. Though dad’s movements show increasing muscle strength, they do not show willful muscle control. That is, his hands explore the tube but don’t try to pull on the tube — his hands push down but do not try to get out of the cloth restraints. He recognizes our voices but, aside from moving his head closer, does nothing. The recovery has not shifted into something where dad explores or communicates through his environment.

The other news is that, after another EEG, another CAT scan, and physical tests, two neurologists see evidence of severe brain injury. When dad’s eyelids are lifted he does not track objects. He folds his hands in a way typical of those who experience serious head trauma. His brainwaves are erratic, and the chances of an acceptable recovery are “extremely low.”

The final news is that, with “aggressive treatment,” we could raise him to what the chief neurologist described as the “Terri Schiavo” level of functioning. (Both dad and Terri suffered from “anoxic-ischemic encephalopathy” following a heart attack.) Terri died in a persistent vegetative state, and there was evidence (the shoulders abducting, the sleep cycle, etc.) that dad is entering one, or is in the early stages of one. More terrifying, especially given dad’s thoughts on the matter (separately expressed to my mother, my brother, and myself), the chances of an unacceptable recovery (the “best” that could be hoped for, where he would be confined to a nursing home) may be as high as 5%.

With this news, our care of dad is now centered on making sure he is not, and will not, be in pain.

The various monitors that tracked his heart rate, blood pressure, and saturated peripheral oxygen have been removed. Other things have been removed as well. He is on morphine.

The woman in the dream

Last night I was falling asleep. I was in that period between wake and sleep where time goes fast — you may look at the clock and it is eleven, and the next moment it is fifteen minutes later.

A woman with big eyes and a big, smiling, but closed mouth was looking at me. Close, just inches away from my face. Her face was round and full without being fat, her eyes were black.

I was looking at her with my mostly closed eyes, seeing her without any features being distinct. Time passed and I was still there, and she didn’t move.

I felt the realization later, but the woman does not look like anyone I know. She looked vaguely oriental — but her skin was fairer than a south-east Asian’s, and her features less distinct than a Chinese. Her lips were naturally red, but not overly so, and her eyes were black without being deep. Nor, and again I realized this later, was there a reason for her just to be there. Or just to smile.

She was not heavy. I felt no weight from her. I got the impression she was sitting somewhere on the bed, probably to the left of my knees.

Time passed. And that is what wass strange: nothing changed. She remained there, smiling her closed-mouth, big-eyed smile.

I got up to try identify her and I felt and saw my eyelids open while I was still seeing her. Then in that instant I didn’t.

My first thought, or maybe my second, was that she looked a lot scarier than I thought just a second ago. But none of her features were scary: no sharp eyes, no teeth, no grimace, no coldness. Only the smile, still but not frozen.

The room was darker than it had been a second before, too. Seeing her, I had the impression that a weak but warm light bulb was on somewhere on the other side. Then awake, the room was of course black: lit only by the odd electronic light, and the street lamp outside.

But seeing her at the time, I did not feel peaceful, or scared, or relieved, or frightful. Only, and I guess this is why I woke up, just every so more tired at the effort of not closing my eyelids in social obligation not to fall asleep while someone was looking.

I think the same thing may have happened later that night, but that may only have been a memory of the dream.

My Brother and My Father

My dad is on some pain killers following his operation, so during the 11 o’clock hour — when he is normally the most active — his pulse did not exceed 91 beets/second. So other than a confirmation that he would soon be moved from critical to pulmonary (merely because the successful tracheotomy means he doesn’t need round-the-clock attention, but does need special attention to his breathing tube) I don’t know much.

My brother, Catholicgauze, has also been following the events. WhileI have let tdaxp become far more of a personal blog than Geographic Travels with Catholicgauze over the past many days, my brother’s words are more concise and less technical.

He has written four dad-related posts:

My dad’s heart attack was the Saturday for last. With this post my first writing on his illness, titled “Sick,” falls off this blog’s front page.

Dreams and what is real

I woke up this world to blackness. Actually, dark greyness. The entire world was two geometric planes, with the minor (lightly darkish grey) plain intersecting the major (very dark) plain at almost a right angle. I was falling, so I reached out to the lighter plane. But as I reached it fell away, and….


… I woke up on the floor and saw I had pushed my nightstand/table/minishelf onto its side as I fell off the bed. The crash as a broken glass of water I had poured the night before. My reading light was somehow undamaged.

But this real thing, I can’t wake up from this.

A very close friend of mine at the university checked up on me today, asking me how I was and (quite seriously) what he should do with my food (I have grape juice which will last for a thousand years, but carrots which were probably bad last week). To the first question, I don’t know, and the second question, whatever he wants.

(I am now looking over what I just wrote and note that the first sentence should probably be “I woke up to blackness.” But “this world” is there, and the only other formulation that rings a bell is “I woke to this world in blackness,” which doesn’t quite make sense. Or, “I woke up in this world to blackness.” Whatever. I’ll leave it as it is.)

The neurologist spoke to my mother after I had left and emphasized that she wanted to see more. I think I know what she means by this: either response to commands or more opening of the eyes. I think hearing this conversation is what got me down. Immediately before that call I was pretty happy.

Everyday I have been looking for one new thing. Direction, not speed, as Tom says, and as most of the people we see say.

Today I saw or heard about the following new behaviors:

  • Opening eyes in response to mild physical stimulation. Before today every time my dad opened his eyes was either because of applied pain or when we were talking to him. Today he opened his eyes while he was being shaved.
  • Grip of the hand. While not a “clasp,” dad can apply pressure to his fingers to close them more firmly.
  • Significant motor response to conversation. At about 11:00 I told my dad I had to go, and this agitated him. His heart rate went up and he began moving around a bit more. So I stayed with him and my mother and talked. What I remember next is clear but out of order: he moves his head directly toward my voice, his brow grimaces in concentration, his lips move slightly without tongue movement (it looked like weekly attempting to speak without sound, but I will report the behavior, not the cognitive speculation).

Additionally, two behaviors which make me happy continued.

  • Dad appears to be in a steady sleep cycle, with activity during the early morning hours and before noon, with sleep in the evening and mid-morning. The burst of activity after 11:00 AM I mentioned above is the latest example of this.
  • Dad also can “arm wrestle” — apply counter-pressure in response to arm-to-arm pressure in the manner of the children’s game. I haven’t lost yet, but I had to concentrate to win today more than before.

So what’s where I am. Greedy and impatient for progress. It’s appropriate that one good site for coma-victim families is

I am back in Nebraska now. I have to teach Wednesday and Friday, and give a test on Thursday, and I take that responsibility seriously. My dad would to: he was a business law college instructor for years on the side, and always wanted to retire to that. (I’m talking in the past tense because his law practice became too successful, so he cut out the teaching so he would still have the same time for his family.)

I miss my dad. I want him back.

Thank you for your kindness.

It smells like spring outside.

Surgery, and the Rancho Los Amigos Levels of Cognitive Awareness

My dad went into surgery today. He got a tracheotomy (to help him breathe without the breathing tube) and a “stomach plug” (to feed without the feeding tube). These had been delayed in the hope that he would be “responsive” by today.

He was under some anesthesia for the surgery, and the surgeon prescribed pain killers in case he needs them afterwards. So it may be a bit before we see further progress, just because of the sedation.

I was a bit down after coming into intensive care today. I did not see much difference between 8:30 this morning and 5:00 PM last night. His legs were still restless, so I rested his right foot on my leg. That calmed him. During that time the nurse came in and points out the PVCs (premature ventricular contractions — irregular heart beats) my dad was giving off.

So I was worried. At least the doctor was cutting back on the nitroglycerin — my dad’s blood pressure had been cut from 200/100 to much lower. They wanted to raise the “factor” (the systolic blood pressure) to 160.

Later in the morning, as we went to see him before surgery, we saw encouraging signs. He now kicks, hard, and nearly whacked my mom’s head with his knee on the uptick. My attempt to calm him by placing his foot on my leg were met with two hard kicks to a sensitive region that is vital to my father’s plans to have grandkids someday. Additionally, when we were talking to him, his shoulders lifted up. (Another, bittersweat, sign is that my dad’s arms are in cloth restraints. His arm movement’s disconnect some monitoring equipment. This is a sign of increased strength and activity, but likewise prevents the “arm wrestling” I’ve enjoyed with my dad.)

After seeing him for the second time I came across the Rancho Los Amigos Levels of Cognitive Function. I’d come across this measure while looking up the Glasgow Coma Score, but this improvements of the past few days have happened without change to his GCS number. However, they do indicate a transition (in my opinion) from Level III to Level IV. Below is a summary of the Rancho Los Amigos scale, paying special attention to Level 3 and Level 4:

Level I No response: unresponsive to stimuli
Level II Generalized response: nonspecific, inconsistent, and nonpurposeful reaction to stimuli
Level III Localized response: response directly related to type of stimulus but still inconsistent and delayed

In this level, the response to stimulation is known as decorticate rigidity or flexor posturing in which:

Shoulders adduct, internally rotate, and flex slightly; elbows flex; forearms pronate; and wrists and fingers flex
Lower extremities extend, adduct, and internally rotate
Hip, knee, and ankle may flex in a spinal reflex known as triple flexion

Level IV Confused-agitated: response heightened, severely confused and could be aggressive

The 4th level response to stimulation is withdrawal in which shoulders abduct and there is more rapid movement than in decorticate rigidity

Level V Confused-inappropriate: some response to simple commands, but confusion with more complex commands; high level of distractibility
Level VI Confused-appropriate: response more goal directed, but cues are necessary
Level VII Automatic-appropriate: response robot-like, judgement and problem solving lacking
Level VIII Purposeful-appropriate: response adequate, subtle impairments persist

The “Rancho Los Amigos- Revised,” apparently a restatement of the original scale, gives the following info for III and IV:

Level III – Localized Response: Total Assistance

Demonstrates withdrawal or vocalization to painful stimuli.
Turns toward or away from auditory stimuli.
Blinks when strong light crosses visual field.
Follows moving object passed within visual field.
Responds to discomfort by pulling tubes or restraints.
Responds inconsistently to simple commands.
Responses directly related to type of stimulus.
May respond to some persons (especially family and friends) but not to others.

Level IV – Confused/Agitated: Maximal Assistance

Alert and in heightened state of activity.
Purposeful attempts to remove restraints or tubes or crawl out of bed.
May perform motor activities such as sitting, reaching and walking but without any apparent purpose or upon another’s request.
Very brief and usually non-purposeful moments of sustained alternatives and divided attention.
Absent short-term memory.
May cry out or scream out of proportion to stimulus even after its removal.
May exhibit aggressive or flight behavior.
Mood may swing from euphoric to hostile with no apparent relationship to environmental events.
Unable to cooperate with treatment efforts.
Verbalizations are frequently incoherent and/or inappropriate to activity or environment.

What gives me hope is that while my dad has not completely met Level III in the Revised scale (1974), raising his shoulders appear to be the abduction of the shoulders part of Level IV in the original (1972) levels.

But ultimately, the “scale” used is less important that the improvement, than the learning, than the new behaviors we are seeing. I would not have thought that I was ever hoping for my dad to be “Confused/Agitated,” but what I’m really hoping for is him to recovery.

I want my dad back. I want him back healthy. I want him back happy.

And I have hope that I will.

Small Signs of Hope

“We’re greedy,” I told my father today. “We see one sign of progress, and we want two . We see two and we want four.”

My dad remains in a coma.

In the comments to the previous post I mentioned that my father was holding his arms together and kicking his legs off the bed. Those behaviors repeated many, many times today. (Besides regularly kicking off his blanket, he repeatedly let his leg fall of the bed so many times that the nurse joked that he was teasing my girlfriend, who was immediately placing the leg back on the bed.)

We don’t see the eye openings from yesterday, but my folk wisdom (and hope) is that the these improvements are cumulative.

Another good sign is that when I try to lift up his hands, arm-wrestling style, my dad will typically apply counter-pressure. This normally happens when his heart rate is high (around 90 beats/second) and the exceptions are when his heart-rate is low (around 80 beats/second). So I now have a useful way to distinguish “rest” and “stirring” in my dad’s deep sleep.

A conversation with a doctor and another with a nurse also made me hopeful. The doctor, who I spoke to in the morning, confirmed that my dad’s tracheotomy was delayed until Monday because of the good news. If he starts “responding [to commands]” by then, there will be no need for either the tracheostomy or his breathing tube. However, even if this progress continues it may be two or three weeks until we reach that stage.

Later, at early evening, a nurse mentioned that she had removed my dad’s arterial blood pressure meter. ABP is a very accurate measure of blood pressure because it is not skewed by physical movement as non-invasement measures are. The downside is that the ABP is somewhat dangerous (“blood what shoot to the wall if it came out,” we were helpfully told). The NBP is less accurate, but as Wikipedia describes:

The non-invasive auscultatory (from the Latin for listening) and oscillometric measurements are simpler and quicker, require less expertise in fitting, have no complications, and are less unpleasant and painful for the patient, at the cost of somewhat lower accuracy and small systematic differences in numerical results.

So we take this as a good sign: the hospital is no longer so worried about my father’s health that they have to use a complex, slow, expert, complicated, unpleasant, and painful method of measuring his blood pressure.

Another good sign was something that didn’t happen. During the first few days, and even that period when there was no progress, we were visited by social workers. We aren’t any more. Nor are we told we may have to make “serious decisions” soon.