Month: February 2016

Stumble in my footsteps

I’ve switched off of classical music. On the drive to and from the rehab facility, it was so ambient that I tended to let my mind drift too much into anxiety thoughts, and sometimes another lane, as well. For a few days, I was listening to some of my old favorite 80s songs just so I could belt out the lyrics at the top of my lungs. I was feeling tired and pissed off enough most days that I had worked out a script to anyone who looked at me strangely at an intersection. “My dad’s in shock trauma, asshole!!! Now let me get back to singing with The Smiths!” Even though my dad is out of shock trauma, I thought it would be easier to yell than, “My dad is in the University of Maryland Rehabilitation and Orthopedic Institute, asshole!” More “shock” value, if you will. That traffic scenario never played out — we are all so distracted with our own lives (and, to be honest, phones) that I never got a second look. I guess I was just looking for a fight, no matter how insignificant. That is one of my faults. So is bottling up things until I hit redline.

Redline was achieved last Friday evening. I had a complete breakdown. The stuff that Hollywood actresses would dream of achieving during a gut-wrenching scene. Snot, wailing, throwing myself on the floor. All of it just came out in a torrent of physical meltdown. I did not go to the rehab facility to see my dad that weekend. My husband went in my stead and made sure I was ok (I was not okay, and he was clearly very concerned. I was completely incapacitated physically and emotionally. I was a fetal position diagram with red golf balls for eyes.) I didn’t want him out of my sight, I thought that something might happen to him. I told him at one point when he got home that I had imagined it would be easier not to be alive. I have not felt that way since after my mother died. It had been a long time. He took the best care of me. I told him early after my dad’s fall that you know you love someone when you would volunteer any day of the week to take on this kind of pain and frustration so that he wouldn’t have to. I meant it at the time, sincerely. I would sign up a million times to deal with all of the emotions and gut stabs so that he would not have to. I would still sign up, but in my initial frazzled state, I of course neglected the fact that he has suffered along with me. In a different way. Arguably a more difficult way, supporting/feeding me/worrying in his own way. He has been an amazing man through all of this.

I think the tipping point was being excited about Dad being moved to rehab but already being slated for release on March 4th. He still has a feeding tube, catheter, and is confined to bed or a special chair. I thought about how I had to go through the vetting process with a whole new system of techs, nurses, and doctors. I had been keeping myself “ok” during shock trauma by saying to myself, “Ok. This is my dad right now.” Friday, for some reason, it hit me like, “HOLY SHIT, THIS IS MY DAD NOW.”

Last Friday night, while excruciating, was a good release for me. It was like some sort of tension demon had finally escaped.  I realize that a small part of my misery was that I wanted my dad to be back to how he was before the middle of January — for me. Now I can get back to cheering my dad on. His victories – no matter how incremental — are his. And I couldn’t be more proud of him.

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February 10th

   
 
 
It has been one month and one day since my dad has been in shock trauma. It also happens to be his 75th birthday. Not really our choice of venue for a party, but I told all of the nurses throughout this past week that February 10th is a big day. They ask him his birthday every day as part of his cognition questionnaire.

I tried to make it a little festive, within the strict confines and definitively non-party atmosphere in shock trauma. Dad got some happy birthdays from the staff as they walked by. Yesterday, he was able to swallow a little applesauce, so I was optimistic that he could have a birthday treat. When I arrived with a large sheet cake in hand, his nurse du jour shook his head and apologized. Dad hadn’t passed the barium swallow test this morning, so no cake, not even mushed-up, softened cake. I held up a grocery bag and asked, “Ok, how about some chocolate pudding I brought as a backup birthday treat?” The answer was again an apologetic no. Dad’s birthday desserts were then donated to the nursing staff. It actually turned into a thank you gift for them, since Dad is being released to the rehab facility this evening. This is a huge milestone. This is the next stage. This is where they say incredible transformations happen. It is an excellent birthday present.

  
My dad fought his way here, even when he didn’t know he was fighting. I tell him this. Yesterday was the first day that he initiated a conversation in brief phrases, strung together fairly coherently. I have been keeping a daily record of my dad’s ups and downs. I scribbled furiously to capture all of the words he was saying. Out of the blue, he said, “I love you, Kris.” When the speech therapy pathologist came in to see him yesterday, he read the name and title off of her badge, “Vanessa, speech therapy pathologist.” He told her, “My daughter is a lion keeper.” She looked at me quizzically. I nodded. When I first learned a month ago that my dad had stroke-like symptoms and couldn’t speak, I had gone through my voicemail and retrieved as many of my dad’s old messages, regardless of how brief or goofy, as possible. Yesterday was a wonderful day.

Today, February 10th, ends with much hope as we face the challenges ahead.

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B positive

Today marks three weeks that my dad has been in shock trauma. The past few days have been stable for the most part, and we were anticipating hearing that soon he would move to the rehab facility. His 75th birthday is 8 days away.

When I arrived at his room this morning, it was dark and empty. He had been moved back to ICU late last night when he exhibited great difficulty in breathing. I had not gotten a phone call. He was not in the best of spirits when I left him last night, but he has had ups and downs overall so I was not expecting a dramatic shift.

His nurse in ICU is fantastic, though. The doctor made an appearance. I feel that I know exactly why my dad was moved, and that the doctors have a plan. It is a setback, for sure. But I’m learning that this is how these things work.

Camp Clark

I have set up camp here, more or less. I recognize a lot of the families camped in the waiting room, a lot of the nurses and I exchange friendly hellos. I ask Yolanda if she had fun with her grandson in the snow last weekend, David and Sara pull up extra chairs when they see family in Dad’s room and shake hands. The other families and I give smiles of encouragement or shrugs of the situation we are sharing. It is familiar. For the next month, it is my job and I punch in /punch out, much like the hospital employees do. I think about what they do when they go home, how they unwind. 

I entertain myself by giving back-stories to the hierarchical levels within a hospital as I observe them. The radiology techs are two men, very short and stooped, devoid of smiles — they reside in the bowels of the hospital, crawl up when summoned, and push the mountainous machine shaped like a Zamboni. They are like trolls, skulking around until they are no longer needed. They never speak. No one speaks to them.

The nurses are like robots, repeating the same script room by room, poking/prodding/squeezing/changing and tossing soiled linen. “Can you open your eyes?”, “Say your name for me!, “What’s your name?” Down the line they go. In every room, a crumpled human being in varying stages of disrepair and indignity. I don’t know how they do it. It is probably hard enough to deal with the monotony of their work, much less chat with a family member perched expectantly at bedside. I write all of their names down. I assume they take a long shower when they get home. They pet their cats or feed their fish, because their schedules don’t allow for dogs. 

The ladies (they are always ladies) who fly by with the liquid meals for shock trauma patients have the same body type, same demeanor: short, pudgy, sweet and effervescent. They are delivering what they feel are good things in white gift bags. They are always brief but charming in their exchanges. They are always too blessed to be stressed.

The doctors have been, before today, mythical beings that are rarely spotted. They swoop, speak in hushed tones, their tired eyes blank except for the reflection of the pink and beige monitor displays in front of them. They whisk away before you can snap a blurry, Sasquatch-retreating photo. There is a hierarchy within the doctor hierarchy. The students are exhaustedly enthusiastic, the residents carry an air of undeserved swagger combined with competitive nervousness. At rounds, they travel in a tight cyclone.

Proof 

Trying to adjust cable under normal circumstances is painful. Trying to cancel cable for a loved one in ICU, it turns out, is an ordeal. I was told I needed verbal confirmation to authorize myself to end my dad’s cable. I told her that was impossible because my father was on a respirator. I ended up hanging up on her. If I had legal evidence, I could use that as well. My dad and I haven’t shared as much as we should have on these things. Phone and medical bills are the same way. I need to prove that I am the only next of kin and have power of attorney. To cancel a cable service. Unreal. 

I confirmed my dad’s blood type today. He needed a pint of blood and responded quickly after it was administered. It changed his status from comatose to slightly reactive. I joked with the nurse, “Actually, he’s a vampire, is that not on his chart?” 

His blood type is B positive. Sounds like a good strategy. Cheers. 

  

   

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