Down Time

sunset

We take down time where we can get it. Whether it is typing up these thoughts next to Dad as he sleeps, trying to get some air/activity around lunch time, or coming home at the end of the night, it is difficult to find solace or equilibrium. The drive back from dropping Carly and Alexis off at the San Jose airport was like a drug. One and a half hours in which nothing was expected or needed of me. In which it was gloriously, physically impossible for me to be at the hospital. I stopped at a shitty strip mall Starbucks in Morgan Hill and basked in the anonymity. I didn’t know anyone; they didn’t know me. They had no clue that my father was sleeping (or raving) in a hospital bed miles away, tubes stuck up his nose and into his veins. I thought, “I could make a life here. Just live at this Starbucks til the end of my days, forget that any of this happened.”

Music has been hugely important to me during this period (and of course all periods of my life). I’ve fixated on a handful of albums in particular: “Carrie and Lowell” by Sufjan Stevens, “Currents” by Tame Impala, and “Ivywild” by Night Beds. “Carrie and Lowell” is very directly about grief and pain but a more subtle streak of terror/confusion runs through the Tame Impala album. Both albums remind me that there is something positive, possibly transcendent, that can come out of trauma. At night, exiting the hospital past the Koi pond and the cafe and out into the roiling Central California fog, I would exhale deeply, relax my shoulders, look at the sky, hop into the family’s Honda Civic, turn on the heat, roll down the windows, press play, crank the volume knob to the right until it broke off, and drive — one arm out the window, shaking hands with the wind and the unfeeling dark.

During lunch breaks, I lace up my running shoes and go down to the path along Scenic that skirts the beach. The ocean is opalescent and still and gloriously indifferent to my life and its current mania. I start out slow, rusty, creaky. My knees do not appreciate the 15 pounds I’ve put on this year. Oblivious tourists pass me on the dirt path. Thoughts race and then slow. I begin to hit a rhythm. Stretch the limbs. The joints pop and buckle. The flesh sings. My ribs expand. Hearts flutter beat fail. My face in Alexis’s hair; my hand on her belly. The sun on my face. The sky ecstatic with light. My father’s big brain fried and served up on a plate. My mother broken but unbowed. The earth spinning. Andrew, the son, Andrew, the brother, the father, spinning.

The Loop, or Before Sundown, or Dr. Dahl and Mr. Delirium, or My Father the Werewolf

Caveat:

At this point, my blog posts are back-logged by about a week. So, the issues that I talk about in this post were true of Dad a week ago. Mercifully, it seems that they’ve abated a bit. I’m hesitant to get too excited about perceived improvements because time has shown us that progress in Dad’s recovery will not always be linear or constant or irreversible. But. Hopefully, HOPEFULLY, we are through the worst of this part of his recovery.


Dad is in some sort of delirium in which he gets stuck on a question or desire. Usually a desire to leave. I don’t blame ya, big guy, but your feeding tube isn’t wireless and your legs don’t work. This sort of thing is apparently common with head trauma patients. It’s worst in the afternoon and evening and is thus described as ‘sundowning’ or ‘sundowner’s syndrome’. Here is what dad fixates on:

-leaving
-sweets
-doing laundry
-‘getting a load out to the car’
-clearing all of our belongings from the hospital room
-calling mom (if she’s not currently in the room)
-why mom won’t let him leave (if she’s currently in the room)
-speaking to the person who can authorize him to leave
-making sure Mom has ordered food from Dametra (a Mediterranean restaurant in town)
-getting dinner for himself (often a salad – which he would not be able to chew or swallow. One time, mom brought him a sprig of lavender that a neighbor had given as a gift and he tried to eat it.)

He gets this dazed look in his eye in the afternoon that is slightly different from the dazed look in his eye in the mornings. Even though he is pretty much perpetually confused, mornings are so much better. He is not making new memories well, but at the very least he is calm, docile. In the evenings he is a nightmare. In that way, the cycle is cruel. In the morning we are encouraged — near ecstatic with his physical (and at times mental) progress. Then we are absolutely slapped down in the evening — like a lazy ping pong volley — by the arrival of a woozy, fixated maniac. Mom and I go home at the end of each day dead-eyed and holding each other.

We both have to dissociate to some degree. This is not our father/husband (it is), this is not our life (it is), this will get better (hopefully it will get better).

I sit through 20 minutes of the loop and I’m ready to punch a hole in my own head. The attendants and nurses (and Mom) have to deal with it for hours on end. It is nearly unimaginable and yet we are face to face with it on a constant basis.

It comes on quickly and unexpectedly. We’ll be chatting — slowly and windingly but in a generally cohesive fashion — then he’ll fall asleep (he sleeps for a significant portion of each day) and wake up a different person. Or, as has been happening recently, he’ll shift mid-conversation. His fixations no longer harmless but panicked and obsessive.

My last day in California, Mom and I walked into Dad’s room after getting dinner to see Dad writhing on his bed — two nurses, an attendant, and his friend Pete standing above him, trying to wrap a velcro vest around his torso so that he couldn’t pull out his PEG tube (the new feeding tube that goes directly into his stomach). “Call security, I’m being restrained against my will,” Dad wheezed. Mom and I rushed in and tried to console him. He’d been combative and resistant before but this was a new level.

Mom and I had spoken to a palliative care nurse earlier that week in an attempt to determine strategies for dealing with Dad’s mania. We weren’t supposed to contradict him but instead were supposed to “yes, and” his statements and questions (she literally said “yes, and” — go improv) and give him the sense that we were all working toward the same goal. The first time Mom tried this tactic, Dad said to her, “You are a seriously confused person.” We struggled to find ways to “yes, and” his insanity:

Dad: Tell mom to pull the car around and we’ll load up all the stuff.

Andrew: Yes…and that’s not going to happen.

Dad: Can I have some peanuts?

Mom: Yes, and you can’t swallow without aspirating food into your lungs, so…no.

As dad railed about the persecution he was undergoing, I leaned in, looked him in his roving eyes and stroked his hair (a default for me throughout this whole process that seemed to have a 60% success rate (astronomical compared to anything else) in calming him down) and told him that I knew he felt persecuted but that these people were here to help him get better. Dad pointed at the Liberian attendant, Saydou, who had been with him on his first night out of the ICU and had saved him from hurting himself on likely innumerable occasions, and said “Not him”. He then turned to Pete, his close friend of 30 years, “Not him”. Mom apologized to the nurse, who — clearly supremely bothered — said, “don’t worry, it doesn’t bother me”. I kept my face close to dad’s and tried to maintain eye contact as he squirmed. He narrowed his eyes at me and whispered, “Is there a clear path to the door?”

“What?” I sputtered, unsure of what he was getting at.

He repeated the question and it dawned on me. I was to be his escape accomplice. I almost laughed. It was a conspiratorial, almost intimate moment amidst an expanse of nearly absolute horror.

The First Ultrasound

In between the fancy little pregnancy stick yelling, “Pregnant” and the first doctor’s appointment were two of the weirder weeks of my life. An odd grey area filled with contradictions. I wanted to tell everyone but I was afraid of jumping the gun. I think there was a part of both Alexis and I that thought we would get to the doctor and she would say, “Whoops, nope. Not pregnant!” Additionally, the first trimester is viewed as a dicey time because of the increased chance of miscarriage. So, we kept it entirely under wraps. At times it felt exciting to have this big secret but at the same time we felt isolated and longed for someone else with whom to talk about it¹.

Pregnancy (so far and as far as I can tell) has a significant partitioning effect on your life. It pushes you abruptly out of one camp² and into another³. Suddenly, you feel closer to your friends who are parents⁴ and a little more distant from your un-babied friends⁵. You glance back at them on the shore of independence from your barge of accountability⁶. And at the same time, you feel that you’ve made this big, exciting step that your un-babied friends have not. You’ve…advanced?

And simultaneously, nothing has changed. You are the same person that you were before⁷. Your lady isn’t any different looking — she’s just nauseated all the time now — and you’re wondering where the daycare money is going to come from⁸.

The first doctor’s visit was a tense and exciting one. Alexis’s OBGYN is a motor-mouthed, caring, accomplished woman who at times seems to have a lot on her plate. She can come off as flighty but is incredibly caring and answers every question we have in a thoughtful manner. And within five minutes of us being there she shoved a big wand up my old lady’s⁹ hoo-ha. Needless to say, I pasted her one¹⁰.

Actually, even before the hoo-ha wanding, a very pregnant patient of the good doctor waddled into the waiting room and said she thought she might be having contractions. One of the sassy, Latina nurses¹¹ took a look at the lady’s undercarriage and said something to the effect of, “Uh, I can see the head.” So, unsurprisingly, the office erupted into a bit of a furor and we were quickly shuffled down the priority list until the lady was safely transported to the hospital across the street.

Once things died down, the wanding occurred and we were faced with a black and white picture of what looked like a fried egg with a bean in the middle of it. This is more or less what I had expected.¹² But then the good doctor hit a button on the ultrasound machine and we were presented with the clear, strong sound of a human heartbeat. Alexis and I gasped and made eye contact. And I will tell you what, friends: you can spend much of your life as a stoic Norseman, but every once in a while you have to bask in the light of something incredible and (literally) life-affirming and entirely beyond your grasp.


¹ Our mailman said “TMI” when I tried to confide in him and Rush Limbaugh is no longer taking my calls.
² Young and fancy-free.
³ Old and RESPONSIBLE.
⁴ And they in turn have a whole hell of a lot to tell you (all helpful).
⁵ Oh god please don’t leave me. I’M STILL COOL!
Barge of Accountability is the name of my new band. Or should it be Accountability Barge?
⁷ Slightly flabbier and less accomplished than you expected to be at this age.
⁸ Prayer.
⁹ Not actually old. Sorry, baby.
¹⁰ Just kidding. I didn’t punch a gynecologist. Not funny.
¹¹ I know, I know, this is a GROSS racial generalization but each of the nurses in the office is in fact Latina, sassy, and absolutely awesome.
¹² Though it did remind me that I hadn’t eaten breakfast yet.

The Hospital

It is possible that you have never truly known love (or maybe helplessness) until you have returned from consoling your mother in the hospital parking lot to see your fiancée and your sister holding your father’s ankles and soothing him while nurses shove a tube up his nose, down his throat, and into his small intestine.

We all fear that the current nurse (let’s call her — I don’t know — Dumpster Brain) is incompetent. She didn’t thoroughly crush up Dad’s medication, which meant his feeding tube got clogged, which meant they had to take it out and insert another one. None of us wanted to be around for this barbaric (and necessary — it’s all barbaric and necessary) procedure, so I accompanied Mom out to the parking lot to send her off on a break. We discussed our distrust of the current nurse and also the worthlessness of that distrust. You don’t get to just request a change.

It’s hard to tell at any given time whether we are in a “two steps forward, one step back”, “two steps forward, three steps back”, or “two steps forward, two steps back” sort of situation. The doctor is hopeful – at times almost nonchalant (oh, how I’m jealous of that motherfucker’s nonchalance, give me a goddamn stein full of it.). It’s hard for us to tell because we see Dad nearly all day every day and all we can think is, “he still doesn’t really know where he is, he still tries to leave, he still tries to pull his tubes out, why isn’t his brain getting better?” If I were to live tweet the situation, I would just send out the tweet “Everything is terrible” every five minutes.

On Saturday, I thought, ” This is hell.” Then I thought, “You’ve been here two days, don’t be such a drama queen. He is alive. He is not in pain. He is not, currently, dying.” We are, all of us, dying. We are, all of us, alive. Drama queen.

The Hair Curtain and the UFO

We were sitting at the dinner table when Alexis told me she was pregnant. She tilted her head so far down that her hair created a curtain, entirely obscuring her face from me.

This happened.

When she said the words, I got up in the middle of the room and spun around with my arms outstretched, emitting a high pitched sound like a UFO.

This also happened.

Viewed from the outside, the scene would have undoubtedly looked like an interaction between two clinically insane people.

Alexis was afraid to tell me because of my initial resistance to the idea of getting pregnant, which was understandable but still made me sad. I asked her to pee on another stick so I could feel a little more involved in the big moment. Instead of a plus sign — or something equally bland — the stick just said “Pregnant”, which I found hilariously blunt.

Pregnant.

The day after Alexis told me, I sat on the couch and freaked out for about 20 minutes. “It’s too soon. We’re not ready. We haven’t been together long enough. We don’t truly understand each other yet. The time and energy required to raise a child will take away from my artistic life and my alone time and cause me to resent Alexis and the baby and result in a cold and tense family environment that will ruin each of our lives.” After allowing those thoughts to recede a bit, I very clearly thought, “Well, those questions are no longer relevant or helpful.”

And honestly, HONESTLY, other than those 20 minutes I’ve almost entirely felt excitement about the road ahead. In a rare act of pragmatism, I was able to see that questioning the timeline and pace of things was now nearly 100% useless. My time was now better spent preparing for and being excited about a bright, new future.

But I’m still ready to pack a small bag if things go south.

The Ups and the Downs

Hi everyone. If you’re here and you’re reading this, thank you. I started out wanting to write a blog about the ups and downs of my own process with fatherhood but then life intervened and my father suffered a traumatic brain injury. So, the blog will now be about fatherhood from both directions. I’ll alternate posts about Alexis and my experience with Shartz (the current chosen name for our incoming daughter) and posts about Dad. It may be a little bipolar but I hope you’ll stay tuned. And if you have similar experiences or any response at all, please let me know. Post a comment or hit me up on Facebook. Let’s span the distance between each other.

Pack a Different Type of Bag

Dad and I shaving.

It is possible that you have never truly known love until you have watched your fiancée push along your father’s IV tree as you wheel him around in his wheelchair.

Dad fainted getting out of the car a week ago. His eyes fluttered, then rolled back in his head, and he fell like a tree. Mom tried to get to him but couldn’t get out of the car quickly enough. His head bled profusely. He vomited, stopped breathing for one minute, then spent the next 36 hours unconscious. My mother relayed all of this to me over the phone, her voice rising to a keen.

Dad has fainted four times over the past couple years. The first three times he landed on something soft (or at least soft enough): sand, his bed, another car. This had been described to us as related to his Parkinson’s, though that is now being called into question and he is being visited by cardiologists. I feel foolish for not pushing the issue further with Mom and his doctors. But much of living life with a family member with Parkinson’s involves resigning yourself (or steeling yourself) to decline.

Carly, Alexis, and I flew back home to support Mom in Dad’s recovery. During a layover in Seattle, we ate shitty airport Mexican food, I drank some margaritas, and we made a silly video together. It was fun. The last hurrah before touchdown. Is it ok to laugh and enjoy yourself while your father lies potentially brain-damaged in a hospital? That was a dumb rhetorical question. It has to be ok.

Everyone at the hospital is lovely and kind and accustomed to dealing with overly-involved families who ask too much of the staff. I find myself swinging back and forth between love of and revulsion for the hospital. It is incredible. They are incredible. It is also a grim hall of death and dying. Alexis and I took the late shift with Dad the other night, and at the end when we emerged into the cool California darkness, people were going about their Friday night lives. “What are you doing?!” I wanted to scream. “People are dying in here!”

This is one of the most expensive hospitals in a state with very expensive hospitals. We hope that cost correlates with quality.

Dad is out of the woods in terms of anything immediately life-threatening but Parkinson’s complicates every aspect of his recovery. Rehab will be brutal and taxing but that is the good path. The other path is a nursing home, which is the right path for some people, plenty of people, but holy god please not for a man who is 66 and still actively repairing things around the house (he lives for projects).

There are obstacles in his path to the rehab facility and this puts Mom in the mindset that he has to “perform”. He has to show everyone that he is able to withstand the demanding physical therapy they are going to put him through. In tutoring, I try not to congratulate myself for my students’ success because then I would have to blame myself for their failures (maybe ‘lack of progress’ is a nicer phrase). I try to get Mom to stop ecstatically jumping on perceived advancements because that makes the perceived setbacks that much more crushing. And the last couple days have made it clear that there will be fucking plenty of both.

In one of my favorite short stories by Lorrie Moore (People Like That Are the Only People Here: Canonical Babbling in Peed Onk) a couple deals with a potentially terminally ill infant. The mother asks someone else in the ward how to cope and the response is, “You just put down your head and go.”