End of Life Issues: Torn Apart

Living Wills Personal Story
So many of us think we will live forever...
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I vaguely recall the day when in my early 20s I received a letter in the mail from my parents.  At the time I was in the US Navy, stationed in Corpus Christi, TX.  It was an odd thing to receive mail from my parents.  We spoke every Saturday morning with regularity as had been our practice since the time I exited basic training and had freedom to use a phone at my leisure.

Once open I was stunned to say the least to discover four separate documents enclosed within.  Two of them titled, ‘Durable Power of Attorney’ and the other two labeled ‘The Living Will of…’ and each later bearing the names of one of my parents.  Without missing a beat I entered my apartment and headed straight to the phone punching the speed dial button number one for our old home phone number, not thinking of the time difference.

Eventually the clock crept around to the time when I knew Dad would be home and he answered quickly with his traditional melodic greeting.  We exchanged the minimal pleasantries before I could get to the point of my call asking, “What the heck is this I got in the mail today?”  Dad responded with a light chuckle and said simply, “Well your Mother and I just figured it was time to get things in order in case anything was ever to happen to us so that you and your sister could be able to make decisions and know how we preferred to have things handled.” I listened impatiently waiting to respond with the thought that this was pretty morbid and that a little forewarning would have been appreciated.  Dad, who has always had a bit of a dry humor thought my complaint funny and said he didn’t think I would have to worry with it anytime soon.

Sadly, he was wrong.  As most of us find growing past the age of 21, we tend to spend far more of our lives looking backward at past events in life than we do looking forward.  The years went by quickly and 8 years later, having enjoyed just a few years of his retirement and before Mom could join him, Dad suffered a major stroke.  The stroke was pretty disabling but Dad transferred to rehabilitation at the Roosevelt Institute at Warm Springs, GA where he made great strides.  Unfortunately, his stroke left him with a very limited vocabulary, some of which was very colorful for my quiet and reserved Southern Baptist Deacon father.

On a typical Sunday morning in July of 2005 we all began our routines.  I got up early and left for church, Mom slowly getting started as I headed out the door leaving Dad asleep in the bed.  Soon enough she would leave for church with all as normal as any other day.  Mom had long since retired and the majority of Dad’s care fell to her but I had remained at home and made sure that Mom was able to make it to any and all her priorities.  On this particular Sunday I stopped back by the house in order to pick up a dish for a luncheon.  Hearing Dad’s buzz-saw-like snoring I picked up the dish and headed back to the church assured that all was well.  In those minutes between my visit home and my mother’s return Dad fell victim to another stroke.  The silent assassin had struck once more just as the caregivers in Rehab had predicted.  ‘The most likely predictor of future stroke is a previous stroke.’  After all this time, life once again threw us a curve.

A feeding tube was placed and Dad was set to be discharged.  Years before this we had experienced the high level of care that was offered by the local Hospice and asked if he could go there in preparation for rehab since they performed restorative care as well as end of life care.  Their Case Manager came by the hospital, evaluated and accepted Dad as a patient and the transfer took place. 

We could never say enough about the phenomenal care that was given not only to Dad but the whole family in the process of his transfer as well as the entire time he was at Hospice.  We did however soon discover that our perspective as his family and the perspective of his caregivers at the hospice house differed greatly.  In a conversation with my sister I realized that we had both noticed one of his caregivers, a nurse on the floor spoke about Dad and his stay there with a tone of sorrow in her words. 

As this was soon after his arrival and we were looking for him to simply wake up and become responsive before going to Rehab.  At this point we were leaving Dad during the night and going back to our family home for the evenings and to sleep before returning to check on him.  That evening we decided that if we saw that nurse the next day we would make a point of talking to her about it.

Sure enough the same nurse came through with her sidekick, a new nurse that she was training. In the course of her looking Dad over for her shift beginning she made a remark that things seem to be progressing as expect but he is a strong man and he may be here a while.  We decided to interrupt her.  She was putting our Father in the ground already.  I looked to her and asked, “What exactly do you think my Father is here for?”  She responded, “End of life care.”  Immediately I responded, “No!  We are here for Dad to recover enough from this stroke to go back to Rehab at Warm Springs.”  The nurse calmly asked if we could go to another room and discuss this further, later telling us that the patients can still hear what is taking place around them and they try to keep the atmosphere as calm and positive as possible for them. 

When we contacted the Neurologists office we were informed that he had been called to Cuba on a family emergency and that he wasn’t expected back in the office for a week. As best I could muster I instructed the nurse on what was happening, Dad’s deteriorating condition and his lack of response now.  “We are having to make end of life decisions here“, I told her.  It felt so disrespectful to talk that way about my own Father.  “I need to know if the doctor still feels my Dad can recover.”  The patient nurse responded, “I understand sir.  I will ask him when he calls tomorrow, and I am sorry that you are going through this.  I will let you know what he says.”

Again, our family gathered to discuss what to do.  We all knew Dad’s wishes.  Delivered long ago by the US Postal Service were our orders, meant for just such a time as this, when he couldn’t speak for himself.  The impossible decision loomed.  How can we choose?  Would he recover?  What do we do?  The one man I could always count on to tell me the right thing to do was the one man who now could not.  The one person who always had the answers, lay silent, a few feet away but it may have well been miles away.  We decided to give it 24 hours.  In that time if he showed signs that he was processing the food put in his feeding tube we would wait on the Neurologist to return and reexamine him.  If not we would have a huge decision to make. 

Once the door was completely closed we all looked at each other.  My sister spoke first, “well, I guess that is it,” she said, Mom remained silent.  My brother in law chimed in agreement with my sister then turned to me, “what do you think, Brother?”  In that instant almost 2 weeks of emotion hit like a lead weight.  I lost it.  While I had done my best to hold things together for Mom’s sake and for my Sister and to put on a brave face and I could hold back no longer.  Sobbing, I replied that I didn’t know what to think. “I don’t know what to do,” I said.  We sat silently for a moment and I tried to regain my composure when my sister stated in the calming and reassuring tone that she has always had, “Daddy already told us what to do.” 

And there it was.  He had, long ago, in that bulging envelope came the haunting reminder “…this is how I want it to be.”  Now it was time to honor his wishes.  Later that night as we sat around the dining room table at home I asked one last time the only people whose opinion mattered in this, “so we are all in agreement, right?  We are going to let him go?”  All agreed.  The decision was made.  We talked no more about it and soon enough all went on to bed.

The next morning we all got up, had breakfast and caught up on the morning’s news.  Everyone seemed to be moving in slow motion and not really in the direction of the of the Hospice house.  Finally, I said that I was going on over to see Dad.  Everyone casually mentioned that they would be along a little later or they would see me there.  I got to Dad’s room, said hello and greeted him with a kiss on his forehead as always.  The nurse came in to say good morning and I told her that I would like to see Dad’s Living Will which I knew it was on file - Mom was always efficient in those details.  Moments later she returned with Dad’s chart, flipped to the section containing that old familiar document.  It had been a long time since I had seen it and I wanted to make sure that I recalled its detail correctly.  I scanned it quickly and looked into her face and said, “We want Dad to be made comfortable from now until the end.  Will you take care of that?”  She said she would as a knot begin to grow in the back of my throat.  Feeling like it would soon suffocate me I watched as she left the room.

 I stood and went to Dad’s side. I heard people passing in the hallway but felt more alone than at any other time in my life.  Leaning down I kissed his forehead one more time and whispered gently into his ear, “Please forgive me, Pops.  I love you.”  To this day it remains the single hardest thing I have ever had to do.  Standing alone, by his side, I knew that I had done my father’s will.  The last thing he would ever ask me to do, asked so long ago, done. 

Over the next 2 weeks Dad went without food or water, an amazing testament to the strength he still had in him.  He passed peacefully one morning as a testament to the good work that hospice staff do all across this country every day.  I think we had set a record for longest stay there.  They nursed our family as much as they nursed my Dad, even lining the hall that last morning telling us how much they would miss us and Pops.  

But my story is not about Hospice, not about me or about my Dad but a story about the gift my parents gave my sister and I so long ago.  You see, often we don’t realize how little time we have with those that we love until it is gone.  After Dad had his first stroke I thought we were lucky, that we had what most people wish for, a second chance to love those close to us.  We had almost lost him and had been given the opportunity to make sure that we told him as often as we could how special he was to us.  I thought of those days as the gift, but in the end the gift was what he did for us. 

 

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