Quality of Life vs Medical Romanticism

Happy Holiday’s you filthy animals (name that movie reference)

How much did Santa pay for his sleigh? Nothing. It was on the house. Happy Holidays ladies and germs!

Growing up my younger brother was the academic, the brains, the writer while I was the jock. On the off chance one found me in a bookstore or library, chances where I was either looking for the latest issue of Powder Magazine or some book about skiing. On the off chance I could not find anything about skiing, more than likely I would either begin a search for a book about climbing Mt. Everest or something about outer space. Not what you would call a multidimensional kid, but on the other hand, I knew what I liked and usually would absorb everything about skiing or the Voyager spacecraft that the book or magazine offered.

It wasn’t until I was out of college before I discovered that books come in many different flavors and ideas. This is when I discovered my favorite author, Kurt Vonnegut (in all seriousness, his book Slaughterhouse Five should probably be required reading before every election). Other authors I discovered at this time included Alan Lightman and Joseph Heller. Knowledge is like the discovery of new run to ski or mountain to climb, often the best plan is just to send it and enjoy the ride.

Since I am closer to a jock than a writer, I’ve utilized the just send it and enjoy the ride mantra in my blogging. If you want to read an amazing poem which makes you experience 23 different emotions, I’m going to send you to my brother and his work. That’s not my strength. My strength lies in the fact that I’m constantly improving, that I will push my vulnerability comfort level in the hopes I can become a better writer and storyteller than I was yesterday. Dad recognized this early and did his best to help me achieve this goal. In addition to providing help, he was my biggest fan too. Today’s post is about me saying “thanks dad” by sharing the hardest day I’ve ever had in my life which happened while being his caretaker.

I recognize this might be an odd way to say “thanks”. Usually, a post like this comes with some inspirational story about reaching the top of a Mt. Everest or some Tuesday with Dad while drinking some form of spirits where the knowledge of the world is passed from one generation to the next. Not this time. This is a story about the utter ridiculousness of health care, of our current health care system, and of life. The Tuesdays with Whoever stories can be nice and sometimes make for great tv, but they are the exception to the rule. Right or wrong, good or bad, up or down, this adventure we call life is based on ridiculousness and chaos, maybe it is time we all do a better job of accepting this.

Dad

Before I fully send it, let’s see if I can give you an idea of the man I called dad.

Dad retired as a one-star general with the Idaho Air National Guard. He flew the F-102, RF-4 Phantom, and the F-4 Wild Weasel. Although dad was a patriot, he just loved to go really, really fast. Initially, dad enlisted with the Guard to earn some extra cash by sweeping the runway as he called it to be able to support his Corvette habit, he and his friends were big Corvette Stingray fans. According to him, there was no desire to make a career out of being a soldier, only to earn enough money to be able to drive fast in his Vette.

If memory serves me right, a Colonel Byrd (the group commander) took dad under his wing which ultimately led to an opportunity to go to pilot school. After dad’s funeral, some of his friends took me to breakfast where they shared some flying stories. From what I could gather, Maverick (from Top Gun) might have learned how to fly from dad. I heard stories about buzzing Russian warships during a NATO mission in the Baltic Sea to a Russian jet wanting to take dad’s picture while air born. There might have been a story about buzzing a tower too. Dad was born to fly, even as a general dad was still a pilot at heart.

Although dad often applied military disciple to his parenting, he was by no means a typical, made for tv officer. He encouraged free thinking, dissent, even debate, the problem was he had an intelligence comparable to Einstein’s. If you were going to go up against him, you had to bring you’re A-game and even then, you’d still need a fair amount of luck. There was something quiet humbling about watching your dad check your math homework or proofread a term paper on the back of a beer napkin while he was watching one of his car races.

One more quick story about dad. He had his first stroke in 2007ish, I’m blanking on the exact date. At that time, he knew I was taking a final for my 2nd degree in accounting and that my brother was at work, so he decided to drive himself to the hospital during the stroke. He didn’t want to bother us was his reasoning. From what we could piece together, he had absolutely no trouble driving to the hospital in a manual transmission Jeep Wrangler, however, when he got out of his car, he had no idea where to go or what to do next. Luckily, a stranger in the parking lot realized dad was in a middle of a stroke and was able to guide him into the emergency room. Better lucky than good I believe applies here.

The stroke that started the end

It was the third Friday in August 2017, and I had just turned my final to do item to my boss for the week. I had planned to spend the final 30 minutes of the workday cleaning out my email inbox while looking at adasheriff.org to see if I knew anyone who had been arrested recently. Classic workday winddown before the start of the weekend. Right before I was going to pull up the arrest report, I saw dad’s name on my caller ID. Sometimes dad would call me at around 4:50pm to say he wanted a steak for dinner and wanted me to join him so when I saw his name that day, I assumed that was why he was calling so I almost let it go to voicemail. For him to call at 4:30pm was unusual so at the last second, I decided to answer his call. Luckily, I did because on the other end was someone from the Boise Fire Department letting me know they had found dad lying in his driveway asleep, bloody, and barely able to communicate. An ambulance had been called and they were going to take him to St. Al’s for a suspected stroke. Here we go again.

I immediately contacted my brother Tyler, and we headed for St. Al’s. When we got to the hospital dad was alert but extremely angry, like knocking on the door of violence angry. He wanted out of the emergency room but was obviously not able to process much else mentally. As per usual, the ER kept telling us they were “busy” which meant test results would take longer than normal. This wasn’t believable since we heard all the gossip associated with one of the nurse’s recent birthday parties but whatever. Around 11pm they encouraged my brother and I to go home to get some sleep because they were going to admit dad. Tyler and I agreed to meet back at the hospital at around 8am so we could get an update and next steps for dad.

Before leaving the ER, the doctor told us which room dad would be sent too. So, after meeting in the parking lot, Tyler and I headed up to his room only to find the room empty. And when I say empty, I mean it had obviously been turned over and ready for the next patient. However, no one had told either my brother or I where dad was so when we found his room turned over, we started to assume the worse. After scaring the hell out of a CNA to help us discover where dad was, turns out dad was a wonderer, so they moved him to a room right across from the nurse’s station to better keep track of him. By the time dad was discharged, we experienced dad being moved without us knowing a total of 5 times. Word of advice hospitals and administrators, this is the definition of shit care, family members and caregivers should never have to play “find the patient”.

Around week 3 or 4 of dads stay at St. Alphonsus, we started to get updates suggesting dad would no longer be able to live alone. That the damage from the stroke had destroyed enough of his short-term memory that he would not be able to recover. However, my brother and I disagreed. Dad was starting to become more engaged in our conversation with him, he was starting to ask more detailed questions about our work, basically, it seemed like his mind was adjusting to its new normal, so we asked for a pass to take him out of the hospital for a few hours. Our plan was to take him home so he could change into his favorite blue jeans then go to a family favorite restaurant The Stagecoach for dinner. This would be a better gauge of dad’s recovery, especially considering the stupid hospital couldn’t even be bothered to call one of us when they moved him to a new room.

Not good…

All of dad’s scans and tests showed his stroke had damaged the area in his brain where short-term memories are generally stored. His doctors, nurses, and the hospital were proud to the point of almost being smug, that they could tell my brother and I this. It was proof, at least in their eyes, that they were doing their jobs well. However, this knowledge is basically useless because they couldn’t tell us what short-term means. Does it mean yesterday, 20 years ago, or some other period. Turns out, in dads’ case, short-term meant the invention of elevators. I’m now convinced dad started his pass scared because he didn’t know how to ride in an elevator, he was following us on but had no idea what was going to happen when it started to move.

This meant our adventure out with dad was not starting off well. It was about to get worse.

While on the way to dad’s house, he was uncharacteristically quiet. Being an introvert, dad was never a chatty Cathy by any means, but he would engage in small talk at least. When we got to his house, one of us asked dad if any of this looks familiar to him which is when he yelled at us saying that he hoped we knew where we were because he was scared to death. Nothing looked familiar to him. This is shocking, to say the least. I can still vividly remember dad coming home from work early one day when I was still a kid and promptly explained to the family how he almost exploded after taking off during a routine flight. The main reason I remember this is because he was smiling during the entire explanation, basically nothing could rattle dad. Now, a car ride to the house he had lived in for the past 20 years had him scared. Not good.

We took dad inside his house which was an odd experience. Some of his mannerism where the same as before the stroke meaning he would sit in his usual spot on a couch, he would walk in the same path to his living room. However, his facial expressions more resembled visiting a museum. He looked through his clothes in his walk-in closet like they were priceless paintings. Dad obviously did not recognize anything in his house and realized that, but he also felt comfortable in the space as one does in their home. This contradiction was causing him stress and frustration, he couldn’t figure out why this was happening to him. His intelligence was still there, unfortunately his brain could not add all the variables together to get to a solution.

This was obviously hard to watch. Enter ridiculousness.

The intensity of the experience was too much for dad, as soon as he sat down on his couch in the living room, he fell sound asleep. He was out. Tyler and I were in shock, dad was not coming back from this stroke like he did after the first one. We sat there in silence for about an hour or so to let dad rest. I eventually broke the silence by saying going to dinner was probably a bad idea, that we should get dad back to the hospital. Tyler agreed.

Waking dad was not easy, I’ve seen him sleep through bad turbulence while on a family vacation. Once awake, he reluctantly agreed it was time to go back to the hospital.

With the way dad’s house was laid out, it was common to go outside through the kitchen and through the garage. This was the path we took to get back to my car. While in the kitchen, dad saw his broom and almost enthusiastically started sweeping his kitchen. What was happening was dad was proud of himself for knowing what a broom was for and was excited to use it, this is the utter strangeness that a stroke can cause. At the risk of sounding like a humble brag, dad was once in command of 1,200 men and women and flew $20 million military jets with the same routine as we drive a car to the mountain to go skiing but now sweeping was a positive. Utter ridiculousness.

While sweeping dad went into a different world mentally. Now we are guessing he was most likely having a delusion; at that time, we had not seen any sign of him having delusions. Not only that, but dad also seemed to forget how to use his right leg. He kept sweeping in circles while not listening to our pleas to head to the car. We were not prepared for something like this which meant we had no tools whatsoever to deal with dad at that moment.

My brother was closer to dad’s height than I was so he was trying to get dad to drop the broom so he could help dad to the car since his leg was not working. It would be a lot easier for Tyler to act like a crutch for dad than me because of my height difference. Since I was significantly bigger, my job was to block the doorway so dad couldn’t go to other parts of the house, I also grabbed my phone because there was a high probability we would need to call for help. What seemed like a hundred years but was only a few minutes, dad finally stopped sweeping and we were able to get him back into the car without needing to call for help.

When we got back to the hospital, I had the feeling dad could tell that my brother and I were in shock. He was concerned, maybe even worried, that he had done something wrong. Obviously, he hadn’t. I’m not sure anything could have prepared us for what my brother and I had just experienced that day, that is the unfortunate consequence of a stroke or in this case, multiple strokes. That said, surely, we can develop treatment plans that help prevent our dads, moms, or friends from possibly feeling guilty for something they have no control over. Just because there are not many treatment options for brain damage doesn’t mean there can’t be treatment options for stroke patients. We should be treating the experience, not just the MRI scan.

Ridiculousness

I’ve used the word ridiculousness multiple times throughout this post. There is a reason for that, life is closer to ridiculous than it will ever be towards Tuesday with Fred or whatever the name of that stupid book was. The quicker we realize this the better we can finally utilize medicine for improving the quality of life of patients instead of some romantic notion about the falsehood and illusion of time. Here is the kicker, quality of life applies to caregivers too, especially when discussing end of life type issues.

Dad was a huge advocate for this idea. He understood better than most that the only true metric in health care should be quality of life. Over the years, we had multiple conversations about assisted suicide and how every patient should have a right too and option of applying this treatment option which shaped my own opinion on this subject. Simply put, there are too many diseases, conditions, illnesses, injuries where we simply can’t bring a patient back from. When that is the case, time becomes more about suffering or even torture for some, why should a patient have to live through that was dad’s main point. In addition, caregivers have a right to their own quality of life. Dad didn’t want my brother or I to suffer, to be disrupted, or changed because of his health. He had his life; it was time for Tyler and I to have our own. Somehow, we as a culture seem to have forgotten that this is how life should work.

In the case of dad at that point in his life, which included both his physical and mental health, his definition of a quality life was simple. It was about enjoying a great steak with a bottle of good wine; it was sitting on his porch experiencing every aspect of a good thunderstorm, it was giving treats and providing a place to sleep for a friendly cat someone had left in his neighborhood or watching an amazing sunset. Most importantly, for dad a quality life meant remembering the names of his kids, talking to them about their lives and providing advice whenever he could, helping his oldest (me) every time he fell off something even though said son was technically an adult, or being a friend to his long-time friends. It was not being confused by an elevator, it was not being lost in a town he had been living in for decades, or not recognizing anything about his own house. For dad, that was not living a quality life, it was being akin to being a zombie or undead. Pure ridiculousness.

So, the question is how might we treat this ridiculousness, so quality becomes the top priority in a treatment plan? Hallmark movies and religion have taught us that there is nothing more precious than spending time with a loved one or family member, especially in their time of need. If I’ve learned anything from this experience during dad’s last days, it’s that this notion is just wrong and even counterproductive. There was no comfort or value in forcing dad to interact with my brother or I when he had no clue who either one of us where. Towards the end, our presence often made him angry to the point we both had incidences where we thought dad was going to use violence to make us leave him alone. Dad was always protective of my brother and I so it would have hurt him to know we had to deal with him in this state, and I’m not even mentioning how embarrassed he would have been. These types of considerations were more important medically at that point than stabilizing dads blood pressure for example.

I know there will be some, maybe even many, who will find what I’ve said to be wrong, even offensive. Luckily, I have thick enough skin thanks to dad that I don’t really care if I do offend someone. This post is an honest telling of the story of the last months, weeks, and minutes with dad. Some might argue that all the time we spent with Dad before his passing was a blessing. It wasn’t and here is why. Since treatment focused more on the superficial, the supposed romance of time, the last memory my brother and I will ever have of dad is watching him die in front of us from what looked like a painful heart attack. The final breathes we watched our dad take were violent, a struggle. But that is life in its honesty, it’s ridiculous, and not some made for tv show or movie. I’ll never understand why we continue to develop a health care system for the tv show and not the ridiculousness. Maybe, just maybe, if we at least tried to problem solve for the ridiculousness, dad’s final months would have better matched his definition of life instead of some romantic notion that quality and time are the same thing.

One final thought before I go. Being a patient, especially a chronic patient, is about turning the ridiculousness of life into a reality we can live with. Very similar to what Tyler and I experienced with dad. For example, we can now have a poignant conversation with AI yet still have to fill out 2214 forms before being treated for a common cold. We have a health care system that makes decisions based on an Excel formula, but we are constantly upset when a doctor can’t cure us within moments notice. Much like any disease or illness, the key is often ridiculousness, yet we design for the thrill of innovation. So maybe the question is, how might we use ridiculousness in our human centered problem solving instead of designing for the thrill of innovation? Just a thought…

Happy holidays and good luck with whatever ridiculousness of life you are currently living through!

Thanks for everything dad!