Monday, September 1, 2014


"Mom, it's Sunday."

"It's not Saturday?"

It was 9:30 AM, Sunday morning. My mom and I were just getting our day going, preparing for our eighth full day in the hospital Intensive Care Unit. My mom was convinced it was Saturday and then became disappointed to learn that is was, indeed, Sunday. 

We've been stationed in the Park Nicollet Methodist ICU for eight straight days. We are here because my Dad had a relapse of a specific medical problem which prompted immediate hospitalization.

I've been posting a lot on Facebook lately. Churning out Instagrams, YouTube videos, sayings, songs, musings...The stuff of Tortured Artists. Then, there is this blog. For the past five years I've done quite a bit of writing in this blog about my Dad and his Condition. My dad is severely disabled. My Dad is a quadriplegic who cannot talk, eat or breathe on his own. How he got this way is a different story. 

When I churn out all this content, people reach out and give support. Some people even call or visit. It is a nice reminder that we are not alone and that we are still normal human beings. The thing is, though, we are not normal. There is nothing normal about my dad, his condition, or our predicament. 

We are not normal because my dad is Not Normal. I've yet to meet someone who even comes close to the description of his condition. The easiest way to describe it is that he is like an ALS patient who does not die. 

ALS inevitably ends in pre-mature death. But, with my Dad's condition, he can go on indefinitely. Yes, he is extremely compromised with a trach and other tubing, but on most days he is "relatively healthy" and he is of complete sound mind. But, he cannot move, he cannot talk. He can, however, move his head. And his eyes say a lot. 

Currently, I am feeling a little lost. I flew to Minnesota from Chicago over a week ago on August 24th. Today is September 1st; Labor Day. Each morning when we drive to the hospital, I see the normal people doing the normal things – biking, grocery shopping, putting gas in their SUVs before heading Up North to The Cabin. 

I watch the normal people in a mixed state of curiosity and envy. What does it feel like to be them? What if my biggest problem was the line at Sam's Club or Jimmy's approaching first day of school?

In the past few days I have been slowly deflating. My biggest problem has become less about my dad's health condition and become more about my own decline. I am very sore; my butt hurts from sitting in a hospital. My face is all broken out. I've had a few anger incidents. I have to keep smoking and walking and listening to music in order to stay sane.

The funny thing is, I actually was supposed to be here, in Minnesota, but for something else. On September 3rd I was supposed to be in Minnesota to celebrate, well, me. Two months ago I got married. My husband, Giancarlo and I were supposed to fly from Chicago to Minnesota to meet family and have a little wedding party.

Geno is still coming to Minnesota, along with my brother, my sister-in-law and my two little nephews. We are still supposed to celebrate our marriage. But, we are still supposed to deal with my dad's condition, too.

My dad is still in the ICU. He came home a few days ago, but then had to turn right around and go back to the hospital. One thing I noticed about 'Round 2' in the ICU is that my biggest problem became less about my dad and more about us, the Caregivers. My mom is stressed. I am stressed. I am in the very initial stages of wondering if I might beginning to become Depressed. (Don't worry, I will pull out of it. I haven't even gone for a run yet.)

The other night, my mom and I had this little discussion. It was about my wedding registry and how quickly Geno and I married. Then, last night, she decided to shampoo the carpets. There is also a mouse in our house. Last night, to drown out the noise of the carpet-cleaning machine, I put in ear plugs. And then over my ear plugs I put on my noise-canceling headphones. And then I sniffed some lavender and, for the first time in months, took my anti-anxiety medication. 

While waiting for sleep to arrive, I called my Dad's best friend, Stan, and then I called my brother, Paul. Both of them talked about the need to take care of oneself while caring for a loved one. My brother reminded me of the unfortunate phenomenon where caregivers actually croak before the one receiving care. He told me a recent news story about a three-year-old toddler who had wandered into a lake and was drowning. The rest of the family went in after the toddler, and then they all drowned. Like they say on the airplanes, Put your oxygen mask on before assisting others. My brother warned me that we need to take care of ourselves even more than taking care of my dad, otherwise we will drown, too. There is a term for this concept. It is called Caregiver Syndrome:

Caregiver syndrome or caregiver stress is a condition of exhaustion, anger, rage, or guilt that results from unrelieved caring for a chronically ill dependent.[1] The term is often used by health care professionals, but it is not listed in the Diagnostic and Statistical Manual of Mental Disorders. Almost 66 million Americans are providing care to those that are ill, aged, and/or disabled for an average of 39.2 hours per week. Over 13 million caregivers are also caring for their own children as well. Caregiver syndrome is acute when caring for an individual with behavioral difficulties, such as: fecal incontinencememory issues, sleep problems, wandering (dementia), and aggression. Typical symptoms of the caregiver include: fatigueinsomnia, stomach complaints, and so on with the most common symptom being depression. Roughly 70% of caregivers suffer from depression. Due to the deterioration (both physical and mental) of these caregivers, health professionals have given this a name, Caregiver Syndrome. [2] (Wikipedia)

Yesterday I was trying to figure out why I got so mad. Like I got so angry that I wanted someone to provoke me just so I could yell and punch an innocent bystander. I even started wandering into the non-smoking areas with my cigarettes just to see if a nurse might scold me so I could rip her a new one on how I would not be here smoking if she and her hospital had not screwed up on my dad five years ago.

But, nobody provoked me. Nobody even talked to me. So, I wandered around, kicking dead leaves and listening to Crystal Castles really loud in my headphones. Oh - that's another thing. My mom has been bugging me for the past few days, ever since we went back to the ER. She keeps saying to me, "Not so loud. You are talking very loud." This annoys me and I lose my train of thought. Well, since then I've noticed how she talks way too quietly, so I say, "What? WHAT?" until she speaks up. I wonder if I have hearing loss? Or maybe I just don't fit the sorry-I'll-try-not-to-disturb-you Norwegian mold. I even asked my dad's friend, Stan, if he thought I might be hard of hearing and he said No.

You know, I've learned a lot about humans via this whole dad situation. I can almost see right through them. At the hospital, I see Visitors shuffle down the hospital hallways, all woe is me My Next Door Neighbor Broke Her Leg!!! Or, Our Grandma Had to Have Varicose Vein Surgery!!! Guess what? I don't care. You have no idea how much worse your life might get. Go pray in the chapel and see where that takes you.

So, yeah, perhaps you feel uncomfortable reading this because I sound angry. I am not even so much angry anymore as I am sullen. I feel like God rolls his eyes at my optimism. Or, no – worse – I feel like God looks the other way and goes to deal with more important matters.

I titled this post Marathon not because I've raced one but because I know all about the 26.2 mile ordeal. They say that it is the last six miles – from 20 to 26 – that really get you. That is when the mind creepers come in and start persuading you to do crazy stuff like shit your pants.

Well, if this is a marathon, I'd say we are around mile 18. Still chugging along, but starting to worry about Hitting the Wall at mile 20.

What will mile 20 look like? Mile 20 will be the point when we have to start making some decisions. Decisions with scary titles like End of Life and Quality of Living and Palliative Care. This will be a time – Mile 20 – that will eventually come. It could be a few weeks from now, a few months from now, or perhaps even years from now.

Until then, I just gotta keep chugging. I'm shuffling my Nikes down the hot pavement, sippin' my Gatorade. (And smoking my cigarettes.) 

Waiting for mile 20 to come...

1 comment:

  1. Mile 20 has past. The next six plus miles will be the toughest but your many years of training has prepared you for the "finish line."