The Clinical Trial of Time

The Clinical Trial of Time

The clinical trial of time. Do we understand what time actually means? We all have fancy Apple Watches or iPhones that tell us down to the nanosecond what time it is but our audacious technology only produces numbers for us. It doesn’t give us the human aspect of time. That is what this post is going to be about, the human aspect or clinical trial of time.

This Tuesday, January 8th at roughly 11:00am will be the one year anniversary of dads passing. Some days it feels like dad only past yesterday yet some days it feels like its been years. How can time accomplish such a complex feeling if its only a bunch of numbers on our watches? Maybe its because my brother and I were only able to sell his house last month or its a reflection of the intensity of the last 6 months of dads life, all I know is that I’m still physically and emotionally exhausted despite being 12 months out now.

For the sake of literary intrigue, lets start with 12 months ago and work backwards. 12 months ago of course being the day dad died. It was a Monday morning. Both my brother and I were at work, both of us were scheduled to work a standard 8am to 5pm shift. Our Hospice Team, worked on a 24/7 schedule. The facility dad was residing at, Valley View Rehab, also worked on a 24/7 schedule. 

Around 9:00am that faithful Monday morning I received a call from dads hospice nurse. She was confident that dad was finally “transitioning” as she called it and guessed he maybe had 48 hours left. I say “finally transitioning” not to sound glib or insensitive, its that dad had seemed to give up on several other occasions which caused hospice to believe he might be transitioning but he had come back so to speak. 

Dad (before his massive strokes), my brother, and I had never discussed what should happen on the last day, did dad want my brother and I there for his last clinical trial of time. In our defense, no doctor, nurse, councilor, social worker, or even hospice had prepped us for that decision. That 9:00am phone call was the first time either my brother or I thought about this idea of time.  

For those of you hoping for some brilliant insight or inspiring answer to this question I hope you won’t be to disappointed to know that I have nothing. Watching dad take his last second of time has scarred my mental being and soul. For the rest of my life I will have to live with that horrible image in my head. To compound on that image is a strong since of failure I felt that day. Yes, I know and understand that death is undefeated and will always be but dad was only 76. In todays world of supposed top notch healthcare dad should have had at least 5 more years before he had to start battling death. 

That said, I am proud to say I got to stand with my old man as he fought death with unbelievable strength and class. Dad did not give up without a strong fight. As late as that Saturday before he passed, dad was still causing trouble because he either wanted out of his bed or room. In fact, that Saturday before dad spent something like 4 straight hours wiggling and thinking his way out of his bed despite the staff’s need to keep him in it for safety reasons. I was proud of him when I received the phone call saying dad had fallen out of bed but was not hurt, dad was a fighter that did not quit. The clinical trial of time.

Now, lets go back to August of 2017. It was a Friday, about 4:30pm when I received a phone call from the Boise Fire Department saying they had found dad in his driveway confused, bloody, and barely able to verbally communicate. The ambulance was there and about ready to take him the evil hospital known locally as St. Al’s. 

According to the tv, St. Al’s has an award winning stroke unit. They are the place to be if you have a stroke. 10 some years earlier, dad had drove himself to this hospital during his first stroke, he would later say he didn’t want to bother my brother and I since we were at school and work. Dads are funny like that! Now that I think about it, I guess you could say that thanks to that particular clinical trial of time my brother and I were well versed in stroke caregiving protocol. 

Back to why St. Al’s is evil. Simply put, in this clinical trial of time they stole hours and hours of quality time with dad simply because the only concept of time that meant anything to them is their definition of time. 

First, on 5 separate occasions we had to play “find dad” in St. Al’s. This started the morning after he was taken to the hospital. The night before the ER doctor had sent my brother and I home to get some rest since he had to chemically restrain dad. We had a floor and room number, it was only a matter of when someone could come down to the ER to get dad and take him to that room. As we arrived that morning dads room was completely emptied and cleaned. Of course our first thought was that dad had died but no one had bothered to call us. After scaring a poor CNA into making 3 different phone calls to locate him, it was discovered that they had moved our father closer to the nurses station because dad wanted out of bed which set off alarms. This would happen 4 more times, of which one time he was moved to a completely different tower. St. Al’s never once called us regarding these moves nor gave us any indiction that moving dad could be an option. No caregiver should ever have to spend valuable time searching for their loved ones in a hospital! That was such a waste of quality time.

Next. As we would soon learn, dads hospital doctor was scheduled to appear sometime between 9am to 3pm, day nurses were on a 6am to 6pm shift, physical and speech therapy was usually scheduled between 10am to 2pm, the social worker was supposed to be 8am to 5pm but they more worked as needed, housekeeping was once a day, and food delivery was 7:30, noon, and 4:30 to 5ish. Like I mentioned earlier, my brother and I were on a 8am to 5pm, Monday through Friday schedule.

Per dads will and medical proxy, I was the boss or primary point of decision making. Since my brother and I had to work, I was more than happy to share the decision making responsibility with my brother. Dad had made it perfectly clear after his triple bypass surgery some 7 years earlier what he wanted in case things went bad, just let him go. He also wanted us to make decisions based on what we wanted/needed too. Dad would cry if he knew how much of his money actually went to his care versus us but that is another story for a different time. 

Now, hospitals like St. Al’s, like to tell us that they are always available for questions or needs of the caregivers. This was not true. For all tense and purposes, St. Al’s operated under the same 8am to 5pm schedule my brother and I was on. In addition, there is also a distinct difference in methodology between the day and night shifts. Day shift is more about stabilization while the night shifts focus is strictly on sleeping. Unfortunately it is only now that I realize this difference in methodologies of care despite being no stranger to hospitals myself. This is important to note because information always came to us under the guise of one these 2 methodologies.

In the ends, without a doubt, we received more information regarding dads health and condition during his stay at St. Al’s from the good people at Valley View than we ever did during his almost 4 month stay in the hospital. In fact, it was highly embarrassing how little we were told by the hospital. I’m positive there are still 4 to 6 different MRI and CAT Scan results that we were never told about or never were told that they were ordered. This comes from reading all of dads Explanation of Benefits (EOB) statements, no caregiver should ever need to spend time reading EOB statements for valuable and current patient information.

It is not like we weren’t trying to get information either. Its that the little information we received always came under the day or night methodology, not about his actual health. For example, we both took time off of work to sit in on the weekly staff meetings regarding patients. I kid you not, the “doctor” in charge would not even get out of her computer desk to come shake my brothers or I’s hand. She just sat there and inputed numbers into her laptop. We had to ask stupid questions just to get them to shut up for a minute so we could process something like “dad doesn’t understand how to put on his shoes” or needs “assistance to shower”. Dad was a retired 1-Star General who flew at the speed of sound and completed our homework in his head for fun, to hear that he could not longer put on his own shoes was hard to mentally comprehend.

One of this things I solidified during this experience is that information is neither good nor bad, but the lack of information is the foundation of anxiety, stress, and worry. Knowing dad needed X, Y, or Z gave us time management options regarding when to be a caregiver and when to be a concerned son, not knowing caused confusion and ultimately anger towards the system. Anger robbed me of quality of time with dad but it also made it harder for the nurses to do their jobs. Working on a patient out of professional pride and ethics is not the same as working on a patient because the caregiver knows to many swear words and is a scary 6”5’. Not only that, information is great for so called “self care”. 

Soapbox time! I hate the term “self-care” or the ever popular “you can’t pour from an empty cup” by the way. I’m not a cup of coffee or water that only operates until the liquid is gone. I’m a human being who runs on food, water, love, hate, inspiration, curiosity, depression, intrigue, and a need to be human. I’m so much more than a cup. Not to mention in this particular situation “self-care” meant choosing between spending time with my dying dad after work or going to bed at 8pm because of utter exhaustion, how am I supposed to choose “self-care” and not feel selfish. We, as a society, need to quit putting this type of pressure on caregivers. 

In conclusion, the trouble with the clinical trial of time in healthcare is it is ultimately dependent on who is reading it off their IPhone. It is one thing to arrive late to work because that is your bosses time, not really yours. However, it is a completely different definition of time when someone is dying. I don’t care if we change healthcare to operate on patient time, doctors time, lunchtime, or janitor time because any switch to one of these universal understanding of time would have given me more quality time with my dad. Our healthcare system robs us of quality time, it has failed the ultimate clinical trial of time; human time.