An Unintended Metaphor

On Tuesday evening, we gathered at our place with our Missional Community for our normal weekly meal and story dialogue. With the way things had been with Dad, it seemed best to eat our Ham and Cabbage and just sit together and chat. 

Released from the norms of a formal gathering, Audrey spent much of the evening with Dad singing and praying and chatting with him while I continued to host our friends.

Just after midnight, Audrey said her good nights to Dad and I went to sit with him.  I briefly took Dad’s hand and reassured him.  I said, “Goodnight Dad! I’ll see you in the morning!”

I turned to leave but was compelled to remain. I pulled up a chair and sat quietly watching. A few labored breaths and Dad was gone.   

I waited for another breath, but no breath came.

I brought Audrey back. We sat silently together at his bedside, stunned at God’s grace in giving us these last moments with her dad. 

I pondered my final comment to Dad. I told him I would see him in the morning but now…

As my mind scrambled to reorient to an eternal perspective, pieces of Psalm 30 streamed into my mind. 

“Joy comes in the morning,” I thought. 

Dad left the darkness of his suffering and he entered the bright eternal day that is the presence of God.

That was it…that was the truth.

Enjoy Him Herb!! We will see you in the morning! 

“Sing praises to the Lord, o you his saints, and give thanks to his holy name. For his anger is but for a moment, and his favor is for a lifetime. Our weeping may tarry for the night, but joy comes with the morning.” Ps 30

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.   

I'll See You at Home!

Back in December, I found Dad on the floor.  He was curled up in a fetal position, his right arm under his body, his head resting on the carpet, shoulder twisted under his neck.  He had apparently gotten out of bed on his own and gravity took over from there.  

Getting Dad off the floor after he's been down for a while is no easy task.  Though his room is equipped with a ceiling lift, he needs to be wrapped in a canvas sling before he can be lifted.  This is not a problem when he is sitting upright in a chair or bed but can be an enormous issue when he's sprawled on the floor.  If you consider the idea of trying to roll an frightened 84 year old across the floor, you'll be able to imagine the potential road blocks.   Fortunately for both of us, Dad hadn't wandered too far from his bed this time but getting him in the sling was still a big challenge.  

As you might imagine, when I walk in Dad's room and find him on the floor, my immediate reaction is to fly into manic activity.  I've learned to remind myself that the difference between a good leader and a below average manager is a little thing called planning, otherwise known as knowing where you're headed before you try to go there.  

In this case, when I found Dad, I paused to do a quick analysis of the circumstances.  I examined the way he was lying.  I looked to see if there was any toppled or broken furniture.  I looked for blood.  I tried to retrace the incident asking the question, "How did he end up on the floor?"  After evaluating the evidence I concluded he was probably not hurt.  I knelt down on the floor in front of him, bent at the waste, laying my head down on the floor in front of his.  With our faces inches apart I locked my eyes on his and smiled.  He smiled back.  I knew he was okay.  Then I said, "So, Pop, whatcha doing down here?"

He smiled and with characteristic patience and wit he said, "Resting!"  I knew then and there, despite the fall, that would be a good day.

Today was a different kind of day.  It was one of those cool, rainy days in late February, the 29th actually, the joyous quadrennia; LEAP DAY!  I spent the morning of this odd ball day with Dad.

Despite the noteworthiness of the day, there was no leaping or joking around, no reason to celebrate.  Dad had a mild fever.  It's nothing to be alarmed over, but enough to take him from being 85% immobile to 99% immobile, with the 1% only due to the effects of gravity.  It's another respiratory infection the nurses say, the third or fourth for Dad this Winter.  These infections are hardly ravaging but they take their toll on the man, taking away his appetite, his cheery disposition, and his ability to sit upright.

Yeah, for whatever reason, an infection always causes Dad to lean sharply to the right.  They say it is common with Parkinson's.  Dad lacks capability in many areas but we count sitting upright as one of his fortes - that and eating sweets.  Oh, and breathing too.  He usually breathes quite freely.  (I guess when a loved one is living on hospice as long as Dad has, your start to take joy in the little things.)   

Today he was not eating or sitting up straight and he was demonstrating a real reluctance to breathe regularly.  He was restless and somewhat incoherent.  Most days, when I come in the apartment to extract him from bed he is patiently waiting.  Regardless of how out of sorts I am, he is genuinely pleasant and greets me happily.  Today I found him trying to claw his way out of his bed like a trapped bear.  He is particularly lacking in fondness for being "left alone in the cage," the phrase he uses when we raise his safety rail at night.  After two falls like the one in December, we decided it would be best to go against his wishes to "leave the cage open."  Today he was beside himself with frustration at being locked in bed.   

Most days he is able to chew his morning pills but we'd been warned by the nurses to crush his pills as long as he was out of sorts.  He's been aspirating them when he tries to swallow.  This is not good!  So, after I put him in his chair, I went about crushing his regular pills, along with his newly prescribed antibiotics.  I mixed them thoroughly with a small piece of soft banana so he could swallow them easily.  

When I returned to feed him the slurry, he was draped unceremoniously over the right arm of the Lazy Boy, the typical lean to the right.  As gently as possible, I forced his slumbering body back to an upright position and lodged a pillow between the chair and his ribcage to hold him upright.  Over the next hour I painstakingly spooned the purée of pills and crushed fruit into his reluctant mouth as his head slowly drifted closer and closer to his lap. Gravity again!    

As I did this, we watched Moneyball together.  I liked the movie.  If you haven't seen Moneyball, it's an Oscar nominated baseball movie released in 2011.  Watching anything related to baseball on a rainy day in February is a pick-me-up for me but this was actually a great movie.

There's one particular scene in which an overweight player hits a fly ball to the outfield.  For the first time in his life, the chubby guy believes he's hit it well enough that he can move his rotundity all the way to second base in time to get a double.  With that goal in mind, he barrels toward the bag at first.  He lowers his head to gain more focus, to dig deep for more energy and glides into his turn at first base.  He blows past the bag, clearly running all out to make it safely to second.  Unfortunately, just as I did when I was an overweight second baseman, his chest somehow outruns his feet and he stumbles forward and loses control.  He ends up doing a face plant five feet past first base.

Embarrassed and panic stricken, he clammers to his feet, turns and throws his substantial frame toward the first base bag, sliding in untouched.  He thinks he's safe but the ump hasn't said anything.  He lies there in a cloud of dust looking from side to side.  Am I safe?  Am I out?  He doesn't know.  

The reason the ump hasn't said anything is known to everyone but the player.  What he doesn't realize is that his self doubt has blinded him to what he has just accomplished.  His 'double' actually sailed 60 feet over the outfield wall into the stands.  He's hit a HOMERUN!  Laughing players from both teams pull him off the ground and encourage him to get to his feet and finish his trot around the infield.  Brad Pitt's character muses about this being one of those romantic moments that happen in the crazy game of baseball.  

I've come to realize that romantic moments don't happen very often in elder care.  Later on LEAP DAY, Dad got feeling better and started to forget he was sick and helpless. I walked in to check on him and he was awake and looking quite annoyed.  He threw his arms in the air and growled, "What's going on here? Did you forget about me?"  For the first time in three days he was hungry.

Some days it can be easy to feel like everything I do for Dad is forgotten and I suppose, in large part, it is, at least by him.  Everyday is filled with miscues and stumbles, and some days, complete collapses.  After a bad day with dad I feel like that overweight guy lying in the dust.  Perhaps I'm safe at first, but no celebrity will be coming my way.  I'll get no pats on the back, no 'at-a-boys!  I may even be the recipient of unkind chuckles or accusations by the very one I'm trying to help.

But is that the way God sees my day?  I don't think he does.  I picture him bending down, whispering encouragement in my ear, telling me, "Son, in my economy you just hit a homerun!  I am so proud of your work.  Now get up you big lug.  The ball has already gone out of the park.  Keep running and I'll see you at home." 

That Ingenious Hero

I left the worship service and walked into the bright Sunday morning air of northern Arizona, not too far South of the Grand Canyon.  As I walked out the front door of the building, I looked across a vista that seemed to go on without end.  I don't know how far it actually was because my East Coast eyes are just not accustomed to seeing that far.  At the far end of what seemed like miles, stood a magnificent, majestic mountain, rising straight into a cloudless desert sky.  I think in Arizona they call these 'ridges,' but to me it was a mountain.  The sun cast light and shadow in such a picturesque fashion, it literally took my breath away.  I had to stop and compose myself.

I grabbed a drink from the cooler in the bed of my pickup and walked to the tailgate where I leaned and stared across the vista to the horizon.  It was just so big and stunningly beautiful.  I praised God and thought, "This is the perfect way to end a morning of worship."

I turned back toward the building to see how many other worshippers would join me.  I suddenly realized I was alone.  How long how I stood there?  I couldn't begin to imagine but everyone else, all the locals, had gone on their way, leaving me alone in the parking lot.

Strange.  Didn't they see what I saw?  Didn't it arrest their attention and drive them to their tailgates to worship?  Apparently not.  They had come out into the bright sun, chatted for a bit and, perhaps without a second glance or moment's reflection on the Creator, climbed in their vehicles, kicked on the A.C. and hit the dusty trail.

All of this shocking beauty had left them unmoved.  It was just more of the same for them.  Another day in Paradise.  

As with so many aspects of life, sooner or later we grow accustomed to life as we know it.  We are so easily bored.  What once brought pure joy, now brings a ho-hum.  What once filled us with fear brings cold resolution.

So life has become with Dad.  More of the same.  It's not that serving dad's daily needs has ever been anything like a worship experience.  Quite the opposite, really.  But in the beginning, when everything was new, it definitely felt like an adventure.  A Journey in the Dark.

There was fear and apprehension and a lot of moments of, "Yeah...well...ya know what...no...I don't think I can do that!"  And eventually, off ya go and you do what seemed impossible and you survive.  Sort of like repelling off a one hundred foot high cliff or paddling down a dangerous rapid.  Fear followed by the joy of overcoming.

It's been a while since I posted here at Last Days.  Frankly, I just haven't found anything compelling to write about.  Maybe it is that I've grown accustomed to the daily nature of Dad's care or maybe its just that life with Dad has just gotten too routine for me.

Maybe the problem is I no longer feel like Ulysses.

In The Odyssey, Homer writes Ulysses was "that ingenious hero who traveled far and wide after he had sacked the famous town of Troy."  

That's who I was at the beginning of the journey.  "That ingenious hero."

But not now.  Now, I feel much more like...like Larry Daley.  He's the Ben Stiller character from the movie Night at the Museum.   Larry is a would-be inventor whose ideas never quite catch on.  As the story begins, he's once again out of work and forced to take a job as a night watchman or risk losing his visitation rights with his young son, Nick.  Having come face to face with his dad's failure once again, the young boy confronts his father this way:  "Maybe you're not special, Dad.  Maybe you're just an ordinary guy who should get a job like everybody else."

The concept of being an ordinary guy hasn't been real easy for me to grasp either.  And I suppose even hero work can get routine.

So here I am, average Joe, the ordinary guy, growing a bit restless with my heroic duties!

Everywhere I go, all sorts of people ask me the same question.  A clerk at the grocery store, a waitress at the local pizza shop, the ice cream guy, a friend at church, the mailman, the neighbor.  It doesn't matter.  It's always the same seemingly simple question.


"So.... How's Dad?"

I always pause when people ask me, "How is Dad?" as if an extraordinarily long ponder will add a certain profundity to my ill prepared answer.

Dad has Parkinson's disease among many other problems.  In his waking moments he is often in the throws of what nurses refer to as "the mask."  He stares blankly and doesn't seem to hear or comprehend who you are or anything you say.  He lacks ability to lucidly and quickly communicate in a one-on-one conversation.  If you were to talk to him while he's in "the mask" state, you would feel he is simply not there, not listening or unable to comprehend.  You would assume trying to communicate is a waste of time so you'd stop trying.   

Truthfully, I don't often know for sure how Dad is.   He rarely tries to speak to me anymore and when he does it is rare that his thoughts are coherent enough to be understood and when his thoughts are coherent enough to be understood I can rarely comprehend them over the TV noise and the bubbling, snapping, crackling sounds that come from lungs and throat that seem relentlessly filled with saliva and mucous and on those times when I turn down the TV and put my ear next to his mouth and I ask him to repeat, he rarely can remember what he was going to say but, instead, stares at me for a few moments and then looks past me to the TV and motions, with some annoyance, that I should turn up the volume.

If that sounds exasperating, you're starting to get the picture.

But that is not the entire picture.  Like so much of communication, understanding and knowing my father-in-law is all about taking time to ask and taking time to listen.  Maybe the question I need to ask myself is whether I still care enough to ask and wait for an answer, an answer that will come in his time and in his way.

He is like so many people we pass by day after day.  They live, they breathe, they walk past us at the mall, they sit in the next cubicle at work, in the next row at church.  They live out their days a few hundred feet away in the next house but we don't really know how they are doing.  We don't know who they are.  We don't know what they need or how they suffer.

Maybe like me, you aren't anyone special.  Maybe you are just an ordinary person.  But maybe today, maybe to this or that lost soul, you'll be Ulysses, that ingenious hero they happen to need today.

You could find out in a moment ... if you ask.

That Is Enough

The decision had been made but none of us were happy.  It was a lose-lose scenario.  There had been times when these decisions would come easily.  But in this case, doubt lingered on for weeks as decision makers on all sides weighed the options.  In the end, the person with the greatest potential to be happy with the decision would never know a decision had been made and the rest of us, those who knew about it, would have little about which to be happy.  And yet, we were.

Audrey and I used to have one of those iconic, on-going marital disagreements.  This was the one about how I always left stuff lay around for her to pick up.  I can picture how she'll smile when she reads this.  She wasn't smiling then.

There were two parts to my side of the argument.  First, I would argue that if I did indeed leave stuff lay around for any reason, she could be assured it was not with the intent or expectation that she should pick it up.  My argument would have been that I wasn't thinking about her at all.  (Note to husbands: If you are reading this and wondering about using this as an argument, I would highly discourage it.)

However, whether or not I was thinking about her was a mute point because my salient argument - clearly I needed a better one considering the lameness of my first - would have been that I always picked up after myself.  (Pause for the sound of crickets.) That was it!  Strong argument, right guys?

Audrey thought not.  As a matter of fact, the only thing she would agree to was that I was completely out of my mind.

As it turned out, we were both right.  Whenever she found something I left behind, she picked it up.  Whenever I realized I had left something behind, I picked it up.  We both always picked up what we saw and we both never realized the other was doing part of the clean-up.

Later, when I finally got smart enough to realize it actually pleased her to know I was trying to ease her burden by putting stuff away, I would get frustrated.  If I did put stuff away or clean-up after myself, she wouldn't know about it.  I'd get no pat on the back or 'at-a-boy' for that work.  If I left the stuff out, well, clearly no praise for that.  As long as I was looking for a reward from her for 'helping' straighten up, I would be dissatisfied.  I could easily displease her by neglecting to do right.  But she would never know when I did do right.

Pathetic.  I know.

Our situation with Dad this week had a similar feel to it.  We were slated to go away for the week, another family tradition, taking part in the Youth Camp 2011, a four day extravaganza that is the highlight of our teen-aged daughter's Summer each year.  A large contingent of parents go along to serve the kids, enjoy the festivities, and hang out while the kids partake in grueling and exhausting physical competitions, relationship building, and plenty of spiritual challenge.  We couldn't afford the expense of twenty-four hour in-home care for Dad, so our plan was to use our final respite care option, placing him in a local nursing home for five days, a cost covered by hospice twice a year.    

We used our first respite option back in May when we took our camping trip.  It was three weeks after we returned home before Dad began to recover from the trauma.  We don't think there is reason to believe the facility Dad visited was in anyway neglectful or abusive but Dad's response to the experience was dramatic.  When we brought him home, he showed all the signs of a person deeply traumatized.  He had turned in on himself, took no interest in food or conversation.  He recognized no one and treated even his most loyal and trusted aides as if they were sadistic guards in the Gulag.  Thankfully, after a few weeks he snapped out of it.  Though he had grown weaker in physical and cognitive ability, he eventually recovered his trusting and gentle spirit, for which he is known and loved.

We can never be sure how many more hours, days, or months Dad will be with us - he now holds the record with his particular hospice organization as the patient longest in continuous care.   I suppose we can't be blamed for thinking back in the Spring that he may not linger into August.  But here was August and here was Dad and a decision needed to be made.  Option 1, put him in respite care again where he's very likely to experience the same trauma.  Option 2, pay dearly for someone to do private care in the home while we're gone.  Option 3, sacrifice another family tradition to have one of us stay home with him.  None of these options sat well with us so we prayed.  Less than forty-eight hours before departure time, we pulled the plug on respite.  Dad needed to stay home.

Whether Audrey would say one of us got the better end of the deal - spending the week with Dad or spending the week alone serving at Youth Camp - I can't say for sure.  I would guess at this stage in our marriage and relationship, we both would prefer to be together no matter the location or activity.  The decision came down to gender.  Mom would go with daughter.  Son-in-law would stay with father-in-law. Audrey reluctantly agreed to go on without me.

Meanwhile, for Dad's part, he stayed home, in his chair, watching the Western Channel, content and relatively happy.  He is the person with the greatest potential to be thrilled by our decision but he'll never know that joy.  He will never have to think about the disquiet and unease that settled over us as we contemplated enjoying time away at his emotional and perhaps physical expense.  He will never know about the prayer and planning that went in to keeping his routine in tact.  He will never realize how much we looked forward to spending those four days together and how hard it was to give it up for his sake.  He will never know about the sacrifice that kept him from returning to captivity in the place he refers to as 'the prison.'

As I think about Dad in his earlier days, his days as a young father, I would bet there were days when he rolled the same thoughts around in his head about Audrey and her brother.  "They will never know what it cost me.  They will never know what I gave up. They will never be thankful for what I did to prevent their suffering." Children just have no idea what responsibility and sacrifice comes alongside adult privilege. 

I guess we can be the same way toward the Lord and all of his provisions.  I wonder at the burdens, sacrifices, and sufferings Jesus saw ahead, weights he would carry, that he would eventually be called to bear, as he agonized before his Father in the garden that night.  Perhaps he had similar thoughts about what I would never know.  Perhaps he thought about me and my weakness, my inability to bear up under that load.  "No," he said, "I'll carry it for him."  And he walked directly into sacrifice, suffering and pain, full well knowing the losses he would experience.  He did it because he wanted to keep me ignorant of those awful weights, to keep them from becoming a reality for me.  Because of him, I will never know the odious reality of what awaited me.  That is astounding love!

If we choose to live our lives caring for needy human beings, there will certainly be many days that end with no tangible reward, especially when caring for someone as spent as Dad.  Sometimes everything we do is overlooked, regarded as just part of care, so easily taken for granted.  Sometimes all we have at the end of the day is the broad smile of God looking on saying,  "Nice work, son.  What you did today reminds me so much of my son, Jesus.  He was like you, you know.  He sacrificed, and gave himself away, and he went unnoticed most of the time.  I was so pleased with everything he did.  You need to know how very pleased I am with everything you did today.  Well done!  Well done!"  


You know what?  That is enough!


.

Not the Way It's Supposed to Be

It was one of those rare mornings when I walked in to check on Dad and found Audrey was already there, doing what needed doing.  It usually doesn't happen that way because of our division of labor but it has now and then lately.  She's been working nights at her full-time job at the engineering firm so she gets in to serve and visit with Dad more often during the day than normal.

I had gone off to an early doctor's appointment and came back to find her there doing what should have fallen to me; clean-up on aisle nine.  I can't describe what I was witnessing, nor would you want me to, but let's just say, Dad is incontinent in every way it is possible to be incontinent.  Enough said!

As I walked in the door, my twenty-month-old granddaughter met me at the threshold, playing contentedly among a field of toys, unraveled toilet paper, children's books, and various kitchen utensils.  As is usually the case with toddlers in the  'take and put' stage, Brooke is a one baby disassembly crew.  Her sweet smile and gentle spirit belie her destructive power.  She does real well with the take part, but the put for her can be a bit of a challenge.  Even so, when she looked up at me and smiled, I couldn't help but smile back and say, "Hey, baby, how's the Cookie!"

I raised my eyes and followed the trail of abandoned make-shift toys to Gram, a.k.a., my wife, who stood in the next room.  At the same moment my eyes met hers, the telltale odor of trouble rolled over me like a sandstorm engulfing an Arabian village.  There was no mistaking this bouquet for anything pleasant.  I grabbed a quick lung full of air and held my breath.

There she stood, my cherished bride, alone in aisle nine, deeply engrossed in the process.  I said, "Oh... I'm sorry!"  This was not an 'I'm sorry I walked in on you' or 'I'm sorry for disturbing your work.'  This was a sincere and heartfelt, 'I'm sorry you got stuck in aisle nine.'  (I really meant it.)  She shot me a sardonic smile, the kind you might give to your spouse just before you reach into the toilet to extricate the three-year-old's latest flushing experiment.

Sensing a need to be helpful, I did what any good husband would do at such a moment.  Without hesitation I said, "Do you want me to make you an egg?"  She breathed out and half-breathless said, "Sure.  I had a half a p.b. & j. for breakfast and I could use a little protein."

This was one of those sandwich-generation moments, when helpless babies and helpless adults combine to form the perfect storm.  At our house, we call it Friday!

I hit the button for the ejector seat as Audrey shot me one last sardonic smile before turning back down aisle nine.   I fled to the safety of our kitchen to whip up the perfect scrabbled egg for my bride.

Before you come to my front yard to burn me in effigy, you should know that we both have our days in aisle nine!  Aisle nine is never a place we want to be!  Aisle nine is a place we try to avoid at all costs.   Aisle nine is where everything in us screams, 'this is not the way it's supposed to be.'  But sometimes love takes us there.  Love is like that from time to time.

--

On a different day altogether, I walked in to find Audrey serving dad in a much more palatable way, bringing order to some shelves and drawers.  Dad sat contentedly, sipping on his lemon-aide.  Finding all things copacetic, I turned to walk out, but Dad held up his hand to stop me and shouted, "I thought you were dead!"

Ok!  Not the greeting I expected, but not really a big surprise.  I glanced at Audrey to get a clue.  She shrugged and returned to her task at hand.  I looked Dad in the eye and quipped, "Nope!  Not dead yet, but thanks for asking, Pop."  He was not amused and looked at me half crossly and half with a bit of concern.  It was the look he musters whenever he realizes that he is more confused than he thought.

Later that day, Dad began to call me Paul and it struck me why he thought I should be dead.  Paul was Dad's brother-in-law, his wife's older brother who had passed away many years ago.  Paul was taller than Dad and more slender, perhaps built more like me.  It made some sense.

As Audrey chatted with Dad, she realized this would be a re-discovery day for him.  The confusion about Paul's death led him to realize time had moved on and forgotten to take him along.  One by one he inquired about loved ones, slowly realizing, as if for the first time, that he was nearly alone, that most of his generation of loved-ones had already passed on.  Paul had died.  He had gotten that right.  But what about Audrey, his wife, and Frieda, his mother?  Had they died too?  He didn't know.  He couldn't remember?  He thought they were coming back for him.  Why had no one bothered to tell him?  Why was he left to find these painful things out on his own?

This was a sad day.

These were painful yet precious moments with Dad.  Painful for obvious reasons; the loss, the sense of loneliness, the feelings of abandonment.  And yet with all that there was joy.  There was joy in knowing that we were here to walk him through these dark rediscoveries.  There was joy in seeing the depth of love that remained in his heart for those he once loved, that his heart was not given over to bitter selfishness like so many lonely aging adults.  There was joy in knowing that soon Dad and Mom and Frieda would be together again, never to be parted.

There is joy because death is not the way it's supposed to be.

Dog Days, Roller Coasters & Balloons

The house was filled with loud teenagers and balloons.  The occasion was a sweet-sixteen party -  birthday not basketball - to honor my daughter.  One of the games the teens dreamed up, Balloon Burst, involved hugging a fully inflated balloon to your chest until it exploded, all the while doing your best to maintain your composure.  The best part, they say, is watching everyone else try to keep a straight face knowing what was coming.  Some fun! 


Present at the party were about a dozen of my daughter's closest friends and a rat-cha (rat terrier/chihuahua mix), named Abigail.  Abby, a.k.a., Little Dog, is about nine pounds of pure energy, the most athletic dog in history.  I once decided to count how many times she would fetch a ball without stopping.  I gave up counting after 130 tosses and a 15 day stint on the DL for an impinged elbow issue.


Bred to hunt rats and other rodents, the rat terrier is a fearless breed.  Even though Abby has the size and some of the look of a chihuahua, her muscular build and personality show all the signs of being dominated by the aggressiveness of the terrier.  She was a fearless little dog, unlike her predecessor, Sundance, a.k.a., The Weasel, so named because her best skill was looking guilty.  Even when she had done nothing wrong, a simple, 'What did you do?' would send Sundance cowering away like a repentant sloth.  


Sundance was our yellow lab, the Everett family mascot.  She predated Abby by about eleven years and outweighed her by about sixty pounds.  She was always a compliant, meek dog, but she became verifiably disturbed after living through a large scale house remodel.  After that trauma, she was afraid of everything.  Abby was an adjustment for Sundance too.  We had to train the little dog to be submissive to the big dog.  We did that out of respect for Sundance, of course, but I suspect, somewhere in the back of our minds was the thought that, should Abby show a little too much disrespect, it could prove fatal.


I said Abby was a fearless little dog.  However, before Sundance passed away, she managed to train Abby to be afraid of just about everything.  Be afraid of the sirens and thunder.  Be afraid of the animals eating at the trash cans.  Be afraid of the dogs walking past the house.  Be afraid of cat birds.  Be afraid of the tv if its too loud.  Be afraid of trash bags if they are too quiet.  Be afraid of trash bags if they move.  Be afraid of the hose.  Be afraid of wood chairs.  Be afraid of all machines especially nail guns.  Be afraid of trash blowing through the air.  Be afraid of fans.  And my favorite, be afraid of the child safety gate.  In the end, Abby proved to be more chihuahua than we imagined.  She is now almost as neurotic as Sundance and has more than earned her thunder storm title, Shiver Shake.


Imagine the heart palpitations of the little dog during the game of Balloon Burst.  She learned fear of balloons at the sweet-sixteen party, even without help from the older and more emotionally troubled Sundance.  Her eyes were bugging out, well, even more than usual as she backed out the door saying, 'Adios, muchachos y muchachas! I'm headed back to my gig at the Taco Bell."


Before you wonder if you clicked into the wrong blog site, let me make the connection for you.  The bug-eyed look on that little dog's face during Balloon Burst that day was pretty similar to the look on Dad's face the day he came home after a week of being 'held captive' in the nursing facility.  He looked frail and tired.  He didn't want to eat or drink.  He was disinterested in everything and everyone.  And yes, he looked afraid.  It was as if he was a small orphaned child, frightened and alone, uncertain where to turn for help.


As the week rolled on, Dad did not improve.  He was totally turned in on himself.  The nurses began talking as if the end was near.  The trauma, they speculated, must have been too much, the transition had taken a huge toll.  We wandered if our trip was worth it.  Some thought out loud that he may have had a stroke.  We watched and we waited.  Like with the balloon game, as time passed, tension increased. 


Just when we were seriously debating whether to call in distant family members for last goodbyes, he just woke up.  Everything was suddenly normal again.  He ate a bowl of cereal on his own.  He drank a diet coke.  He started giving orders and talking about the kids who mugged him on the elevated platform last week.  (No, that didn't actual happen but that's normal talk for Dad!)


I called Audrey and told her the news.  She gave me an unexpected reply.


"Roller coaster!" 


I asked her to repeat herself.  "A roller coaster," she said with understated emotion.  I was a little confused and could only reply with, "Huh?"  She said, "You know, I think we need a roller coaster in the living room.  What do ya say?  We can charge admission, invite the neighbors, it could be fun!"  


It was her postcards from the edge way of saying life with Dad is a crazy unpredictable ride.  It's the sometimes upside down, sideways, seasick world of caring for a dying loved one.   It does get confusing.


Which way is up? Which way is down?  Is it time to celebrate when the balloon bursts or is it time to celebrate when the balloon doesn't burst?  Life seems so elastic sometimes.  It's squeezed right up to its very limit and then suddenly, without warning, it squirts safely away and drifts quietly back to the carpet.   


As we settle back into routine with Dad, he eats and drinks and sleeps as he always has.  To be honest, we are so very tempted to feel a bit skittish.  Like that little dog, we really dislike the presence of life's roller coasters and balloons.  But then we read Psalm 31.   In the midst of life and death turmoil, David pens these words, "my times are in your hands...be strong, and let your heart take courage, all you who wait for the Lord!"


And so we wait!    

Our Great Respite

There's this crazy moment in one of the Chronicles of Narnia films.  Two kings meet on the battlefield and decide to forego an all-out war with much blood shed, choosing rather to fight man-to-man combat, each man representing his people.  The winner takes all.

A fierce hand-to-hand battle ensues as respective armies look on.  Though Good King Peter is but a lad and less experienced in battle, he begins to prevail over the wicked king.  Here's the crazy moment; out of breath, beaten up and bruised, the evil lord raises his hand to Peter and cries out, "Respite!"

As I sat and watched this unfold, I couldn't help but laugh.  Are you serious?  I think if I were King Peter, I'd be asking a few questions like, aren't you the guy who wants to kill me?  Would you give me mercy if I were tiring?  Are you really asking me to let you catch your breath, to give you a few moments to recoup your energy, maybe check your emails, grab a dark roast with extra sugar to help you refocus on the task of killing me and stealing my kingdom?

Uhm...No!  Sorry Evil Lord! You are going down.

I guess Peter was pretty spent himself and a man of mercy, so he relents.  If you know the story, you know the wicked lord doesn't fair so well in the end anyway, as his own men conspire to kill him before battle's end.

Respite is a funny word.  The only other time I've heard the term respite is in the world of hospice care.   Like in the Narnian story, respite is a term used for the relief period granted to a battle weary soul in need of a rest, to gain some refreshment from and perspective on a relentless task.  In the hospice version, its a battle for life and love, the relentless battle to maintain the comfort and dignity of a loved one in his or her last days.

Peter, in the story, embodies the idea.  A weak, inexperienced man, yet stout and resolute, willing to stake his life to stand in the gap for those who need his protection because love has made a claim on his life and heart.

Life's evil counterpart death, like Peter's opponent, is not so willing to give respite.  Audrey watched today as her father was taken away via a hospital gurney to respite care; his five day stay in a local full-care facility.  "This is the man," she recalled, "who worked with his hands his entire life, working two or three physical jobs at once, working on his cars, building an addition on our home and now..."  

Tears came quickly as she flashed through fifty years of childhood, teen, and adult memories, remembrances of a brave and strong man, busy with toil, flush with vigor.  She told me about how she watched today as the two young EMT's worked with Dad.  They lowered him on the gurney using the ceiling lift.  They adjusted his body until he was safe and comfortable.  They lifted his arms that had fallen limp beside him and folded them gently across his chest.  They covered him with a blanket and they transported him down the ramp to the waiting ambulance.  A man who was always on the move reduced to absolute zero mobility.  Death has wrapped its tentacles around this once strong man and is pulling him ever closer.

But as Baptist evangelist Tony Campolo used to preach, "It's Friday, but Sunday's coming!"

Peter did not stand alone that day in battle.  Though he was weak and weary, Aslan was on the move and the might and strength that brought that lion king back from the grasp of death, overcame evil and the breath of Winter was forever stilled.    

Our lives are no storybook, nonetheless we stand in similar strength.  We have a good Lord who has overcome a dark Friday and now stands victorious over death, daily overcoming our weaknesses and weariness.  He is, himself, our greatest respite.  He battles against the death of our own spirits that would cause us to give way to selfish concerns.  He extends his gracious hand to us through numerous aids and volunteers who give us hours of merciful respite each day and throughout each week.

So now we get a longer respite; five days away with, well, fewer cares.

As we go we can't help but be thankful to God for his grace, first, for pouring it directly into our lives as a daily respite, because we would simply dissolve into puddles without him.  But secondly, we are thankful for the grace he sends through so many ministers of his mercy.  To the many good and kind servants at Heartland Hospice, thanks to you all.  To the friends and helpers at Friends & Helpers, thank you. To Donna for her relentless love of Dad and Audrey and to her many volunteers who give us regular Sunday respite...thank you!

It is all so very good!
  

A Down Hill Ride

If there is anything that can be considered normal with Dad's care, it's that from day to day, his care is unpredictable. Like with Forrest Gump's infamous box of chocolates, 'you never know what you're gonna get.'

I guess the most consistent aspect of life with Dad has been that it is mostly a down hill ride. When he first came to us, he walked with a cane and drove a Lincoln.  As a long-time driver for SEPTA, our local public transit authority, he loved to drive and continued to do so long after doing so was sensible. 

One day I was doing chores around the house and just happened to notice him backing the Lincoln down the drive.  Problem was, my truck was parked just 20 feet behind him.  I rushed down the drive waving my arms, somehow managing to stop him just before he played bumper cars with my grill.  I moved the truck on to the street and returned to my tasks in the house.  Some time later, I looked out and there was the Lincoln, still parked on the drive.  I went to see if he was okay.  He said, "Oh, yeah, I just didn't realize you had moved the truck already." 

Eventually, for his own safety and the good of the driving public, we convinced his doctor to keep him off the streets.  The cane morphed into a walker.  After some time we began to notice, Dad was pushing the walker forward but forgetting to move his feet along at the same pace. If you know anything about gravity, you realize this is not a good scenario, so the walker became walker-with-assistance.  Long walks got too difficult with the walker, so his favorite trips to church and Booth's Corner, a local farmers' market, became trips in a wheel chair, but he continued his walks through the house to lessen his anxiety or stretch his legs, what we affectionately termed his 'caged lion act.'  

Two years ago this month, Dad attempted to walk alone to the bathroom.  He lost his balance, fell over backward, smacking his head hard on the edge of a glass table. He spent several months in a nursing facility.  Mobility has been a major issue for him ever since. 

Today, with the help of his remote controlled electric lift chair, Dad can some times push himself up to a standing position, but just as he was forced to give up driving the Lincoln, walking has become a memory, an activity of the past.  And so the down hill ride continues.

Recently, even Dad's sitting has become less active, spending many hours each day sleeping. No requests. No conversation. No sharing of memories of days gone by.  Just the long periods of sleep, staring at the TV or into the empty space between his chair and the walls before him. 

Funny. I remember days as a young son-in-law when I thought I couldn't bare to hear another word from him.  It seemed like so much endless jabbering, bottomless pits of information about the past, his beloved hobbies, his friends, the things he'd seen and done, all words wasted on a young man too self-focused and self-centered to place on them any value or significance. 

Now his voice is mostly silent, his nervous energy gone.  Each time he speaks a half sentence or a stammering phrase, I want to reach into his heart and, by pure force of my will, pull out a memory, something to remind us both of who he is, what he's done, what role he played in the life of my wife and family.  Sometimes I succeed, in part.   But most of the stories are incomplete, incoherent, or a confused mixture of vague reality and TV land fiction.  

Like Dad, perhaps I just have to recognize that some opportunities have passed me by and are forever relegated to my past.   As it always does, time will tell.