A Break in Routine

On March 16, 2011, I published the first of a series of blog posts about my relationship with my father-in-law.  He was experiencing failing health and had been placed on hospice care in our home.  All concerned were certain his life expectancy was short.  As it turned out, all concerned were wrong, but I’m getting ahead of myself. 

In the financial chaos that followed the banking crisis of 2008, I left a failing construction business behind and entered full-time care for Herb.  It seemed a reasonable thing to do.  I hadn’t made money for several years and had taken a few hard falls that left me with a chronically sore back.  It seems my days of construction had come to an end.

Audrey knew I always loved writing and thought there would be lots of benefit to chronicling my experiences with Dad.  I viewed the idea with some suspicion, thinking it a bit self-indulgent.  Nonetheless, I taught myself what I needed to do to make it happen and began blogging under the title Last Days with Dad.

Funny. It seemed like the right name at the time.  I must have had some suspicion of what was to be, because I subtitled the blog, A Journey in the Dark.  That it was and in my very first post, entitled When God Laughs, I wrote

Each day I spend with Dad may be the last.  I don't know how long a trip it will be.  I'm not altogether sure where we're going or if I can make it all the way there. But for another day, we walk on together.

I had no way of knowing Herb would live for three more years.  Over the next year I wrote a total of thirteen posts.  I wrote as if each post may be the last.  Strangely enough, I didn’t realize when I posted for the last time, that it would be the final post.  See You at Home was published just a week shy of one year after I began to write, March 3, 2012.   I actually wrote the post on February 29th.  Leap Day was a particularly bad day for Dad as the post expresses. 

Despite all odds, Dad lived on. His last days turned into last weeks, and last weeks into last months and last months into last years.  Caring for Dad moved decidedly from critical care of a dying man to routine care of a man living with chronic disabilities. His hospice nurses began to call him the Miracle Man!  I stopped writing.  I simply could think of nothing more to say.

Though Dad could eat and drink on his own and kept himself occupied well watching television and leafing through magazines, he was otherwise helpless.  He could stand and he did so, often with reckless impunity. You see, though standing was relatively easy for him he couldn’t walk.  And exacerbating this all the more was the reality that Dad didn’t remember that he couldn’t walk.  Standing meant attempting to walk.  Attempting to walk meant falling.  Falling meant injury.  He stood.  He fell.  He was injured.  This became one of our routines.

Dad couldn't use the bathroom on his own. He couldn't shave or shower alone. He couldn't dress himself. He couldn't prepare a meal for himself. He couldn’t clean dishes. He couldn’t wash clothes.  These too became the routines of the everyday where Dad was concerned.  We built our life around his care.

Audrey returned to work full time.  Friends and family rallied around us to be with Dad so we could have an occasional hour or two to ourselves.  All of these things became scheduled and routine.

In that first year of caring for Dad, I posted thirteen times to Last Days.  The blog was being read by thousands of people in dozens of countries. It seemed to hit a nerve with people everywhere who were caring for disabled relatives.  I was astonished and so, with Audrey’s encouragement, I started attending night classes toward completing my Bachelors degree.  I took courses that allowed me to write.  And I did.  My weekdays became split between routine care for Dad and the research and writing required by my course work. My weeknights were spent back with Dad.

Our daily care for Dad moved from being the focus of life to being more of the fabric of life.  His care was no longer a needlepoint we hung on the wall of our days but more like a carpet that lay beneath all that we did.  By necessity his care was part of everyday’s plan, but every day’s plan was no longer about Dad.  His care was the hum of a ceiling fan - always there, but always in the background, often going unnoticed with little apparent affect on daily life.

Audrey spent her weekdays at the office.  She spent many, many hours during the evenings encouraging our daughter Olivia.  Livvy has dyslexia.  We found her to be immensely gifted in several key areas, but reading was a major roadblock for her. Audrey spent many hours helping her through laborious reading and writing projects.

Between work and helping Livvy, Audrey rarely got to see Dad during the week.  Expecting that any day could be his last, she dedicated herself to loving on him on the weekends. This allowed me a much needed respite as well as uninterrupted time to pour into my writing and research.

Time went by.

Dad’s quality of life lessened little by little. His struggle with Parkinson’s disease made it increasingly difficult for him to eat.  Trips out for meals became difficult.  Like a small toddler, Dad wore more than he ate.  His incontinence made bathroom trips unwarranted.  Aside from trips to the shower and routine changes of soiled clothes, Dad’s days were spent in his recliner.  He ate in his chair - cheerios and banana for breakfast and peanut butter and jelly for lunch.  And cake, there was always cake, or what he liked to call “the sweet-bread.”  Dinner? A little less routine -when he was alert, usually a small portion of whatever the rest of the family was having.   Often he was not alert in the late afternoons.  He slept through many dinners.  This became routine and more time went by.  

Dad lived on.

Months became years and I completed my degree.  I graduated with a BA in August of 2013. Olivia finished high school that year with a flourish and was accepted into Harcum College.  She now studies Interior Design.  Audrey continued to build a reputation as a reliable engineering rep for her company.

Dad lived on.

We began to make other plans.  We partnered with others to engage in local mission establishing a local ministry.  We settled into a long-term living arrangement with a friend in the neighborhood where we hoped to minister.  We established a meager but livable budget.  I started working toward an M.Min. in church planting.  I accepted a support-based position with an organization that mobilizes missionaries to work in local church missions.  Though the position requires many months of fund raising before our family sees income, we hope this opportunity will enable us to receive an income for our local ministry work up to and into our retirement years.   

Audrey also began to look at pursuing a degree.  For the first time in many, many months our life seemed to be falling into a routine.    

Last Monday there was a break in routine. 

Dad had a severe seizure – possibly a stroke – while receiving his routine daily shower.  After several traumatic hours of doing all we could to keep him breathing, his long-term aid, Wilson, and I got him into bed.  Since that time he has not eaten or responded in anyway.  He has had only trickles of liquid, water on a mouth swab that we place between his cheek and gums. 

At first we were sure he would come out of it.  He always has.  He’s the miracle man.  He can’t go out this way, so suddenly, without warning.  It just isn’t like him.  Indeed, the nurses felt he had hours to live after the incident.  But the hours moved into days and he showed no sign of stress, no organ shut down, no sign of trauma.  He hasn’t eaten or had liquids yet he steadily breathes, day after day.

Dad lives on. 

Is this a new routine?  Will he sleep for a while and one day just come back to us?  He may.  If he does and he starts to eat and drink, he could return to his old routine or maybe establish another.  We pray he will.  But as he enters into a second week without nourishment, it seems more and more likely he will leave all of this routine behind.   

Only time will tell.  And so we wait.