Paul's Heart

Life As A Dad, And A Survivor

Patient versus Caregiver

I apologize.  As you will see by this post, it has been a long time since I have written, but you will also see why.  But finally, here is post #199.

Several weeks ago, I received a phone call from my father.  His doctor was expressing concern over a spot that had been found of his left lung on a CT scan.  My father could not understand ordering a CT scan for just a simple cough.  As it would turn out, he would be diagnosed stage 1, non squeamous small cell carcinoma – lung cancer.

His scheduled surgery was for May 13th, the day after Mother’s Day.  It may have been Mother’s Day, but my mind was completely preoccupied with my father’s pending surgery.  Because of the early arrival, I had planned to spend the overnight with my dad, which would have the benefit of providing alternative conversations, to distract him of his concerns with the pending lung removal.  But with my previous scheduling balancing my employment and my campaign for school board, I had hit what I thought was my burnout point.  Evidently not.

My brother and I made final arrangements with each other in regards to post-care for my dad, and constant care for my stepmother.

Day #1

Monday – it had begun.  My dad was prepped for surgery and the anesthesiologists had come into his holding room.  The “A Team” I will call them had given some good news, that they were going to provide an epidural which would seriously help with pain.  My dad was prepared to lose the entire lung as the surgeon had warned.

When the surgeon called, he informed me that my dad was fortunate or unfortunate depending on how you wanted to look at it.  Only the 1/2 of the lung came out.  The other half of the lung, and other lung was fairly riddled with emphasema and he most likely would never be able to survive that surgery.  This partial lobectomy would be his best bet for recovery.  Possible radiation therapy loomed upon recovery.

When everything was completed, my father was moved to Intensive Care Unit, and there he was.  Of course there was pain, but with my own eyes, I saw my dad survive cancer surgery.  I had no doubt that he was going to get the best care because as I stepped off the elevator, I realized where I was, standing outside the same intensive care unit where I had been more than five years ago, recovering from my own major heart surgery.  In spite of overwhelming flashbacks, I was able to remain focused on making sure that my father was being taken care of.

Day #2

Tuesday

My father was transferred to his own room for the duration of his recovery.  Ironically, his room is directly across the hall from where my room was on the exact same floor.  But instead of a growing alertness and recovery, something is wrong, horribly wrong.  His symptoms are stable, but he is not retaining consciousness.  Having been through enough procedures, I chalk it up to the pain meds just keeping him real sedated.

Day #3

Wednesday

However, by today, my stepbrother Ralph and I both agree, this is not normal behavior.  We did our best to convince the nurses that something was wrong.  He was not touching his food and had not eaten in nearly four days now.  Remembering that I had been told he struggled with his breathing while in recovery, and knowing how important oxygen is to the brain, challenged the nurse and a call was put into cardiology.  They would attempt and MRI later that night, but of all times for him to be “aware”, that is when he chose and would not cooperate.

Day #4

Thursday

The doctor did not even attempt to do another MRI on my dad, instead they chose to do a CT scan.  It should have come as no surprise, but was definitely a disappointment to find out that my father had suffered two strokes at some point either during or after the surgery.  It seems that some substance or article had broken loose, most likely from one of his heart valves, and had travel into the very carotid that had just been cleaned out a few months back, completely blocking it.  Removing the blockage carried too much risk, but so did the load on the other two arteries.  The doctors had decided on Coumadin therapy.

Day #5, #6

Friday and Saturday

It was more of the same, visiting with my father, and while having a small conversation, he would stare off.  But a new symptom was developing, a racing heartbeat.  Just sitting or lying no his bed, resting, his heartbeat could jump as high as 190 beats per minute.  The doctors scrambled to find out the cause as well as relieve or stop the symptom.  Though my father had become a slight bit more alert, he gave no obvious sign that he could feel when these episodes would occur.  But they would also not remove him from his bed or chair, which they needed to get him started not only to get him out of the hospital, but to avoid any further complications such as pneumonia or blood clots.

Days #7, #8, #9

Sunday, Monday, Tuesday

My father still was not eating more than two or three bites of his meals.  Conversations with him would often be lost and you could tell not by his nodding off anymore, but his eyes would grow large as confusion sunk in as he tried to survey his surrounding environment.  But the staff has  begun to do something totally unexpected given my father’s condition.  Doctors are starting to tell him that he should be going home.  WHAT!!!  My father is my stepmother’s caregiver and he cannot even take care of himself.  We do not even know the results of the cancer pathology yet.  But a decision is coming, he must be moved to a rehab facility for not only his surgical needs, but now to recover from his strokes.

Day #10

Wednesday

My dad is moved to a rehab facility and is now more confused than ever.  He honestly believes he is at home.  It is almost as if the took the facility and dropped it right over top of his home, like an overlay.  The layout of the floor is very similar, but his actions only confirm his confusion.  He has three hours of diverse therapy ranging from speech, physical and occupational.  Occupational does not just pertain to returning to work, but to functioning in the home when you are discharged.

Day #11

Thursday

Every day my dad seems to be making some progress.  Clearly Ralph and I are exhausted but we are determined that he must get through this.  We make sure that observations that we make during our visits with him are communicated to the staff so that they can be dealt with or concentrated on during therapy.  Just the simplest comment, that he ” could not remember what he ordered for dinner” that day, is key to dealing with a stroke recovery.  Plus, case management is now talking about discharging him within a week.  It seems impossible to me that a prediction like that can be made with a person who is unable to recall what prescriptions he has taken, will not only be expected to take care of himself, but my stepmother as well who relies on his care for injuries she sustained nearly two decades ago.

Days #12, #13, #14, #15, #16

Friday,Saturday, Sunday, Monday, Tuesday

There is continued improvement.  The days have really become a blur for me.  All that matters to me is that my dad continues to improve.  The insurance company has weighed their opinion and granted my father more time in the rehab facility.  Duh!  He needs it.

Day #17

Wednesday

Shortly after I receive the phone call from my father’s caseworker at the Rehab Hospital, my dad is told he can expect to be discharged to go home in a week.  There is disappointment for him, and clearly he still has deficits.  But the facility claims they can no longer keep him.  In spite of our protests, we must now plan for him to return to his home, with his wife next week.

I have counted the days on this blog, but at this point, I really do not know how long it has been or what day of the month it is.  It has been so hard to watch my father go through what he has.  It was much easier for me to be a patient and go through what I went through than be his caregiver.

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