Slowly turning her head, she stared vacantly in my direction as though seeing me for the first time; confident in the belief that no son of hers would have ever asked such an inane question, she, nonetheless, offered an extremely sane reply,
“I am going crazy! That’s what I am doing! All I do – ALL day – is lie here staring at this ridiculous ‘popcorn sky!’”
2008
Arriving at the nursing home in the summer of 2008, some were convinced Mom wouldn’t live to celebrate Thanksgiving – let alone Christmas. The statistics were certainly not in her favor; number crunchers in lonely cubicles had coldly calculated a life expectancy of between “six to nine months” for nursing home residents in the final stages of neuromuscular disorders.
By October, hospitalized for the third time in a month, two neurologists spent perhaps fifteen minutes – collectively – making separate evaluations before brashly pronouncing she was in the final stage of her Parkinson’s disease and would not live to see another Spring. (“Sorry, thank you, here’s my bill, goodbye.”)
As if slapped, we had been assured – in unambiguous terms – Mother’s clock was rapidly winding down.
On her discharge back to the nursing home, no time was wasted; Hospice was initiated immediately.
I fast became a living, breathing contradiction: I absolutely wanted Mother’s suffering to come to an end, but would have gladly admitted I didn’t care at all for the prospect of losing her in the bargain. Given time, however, I drank the “kool-aid” becoming convinced that once the chain of events with Hospice was set in motion, Mother would be transported on a conveyor belt toward certain demise.
Our death watch began.
Halloween gave way to November. Days slowly became weeks and, miraculously, Mom seemed to thrive as we eventually managed to celebrate the holiday season that culminated with the arrival of a New Year. Mom was fighting and I allowed myself to hope.
January 2009, however, dealt Mother a severe blow.
A particularly vicious bug made the rounds at the nursing home and didn’t stop at Mother’s door; bedridden for nearly three months, she valiantly fought a respiratory infection that had succeeded in taking the lives of more than a few residents.
By mid-February, a hospice nurse abruptly declared Mother would live no more than two weeks; touting a “95%” accuracy with similar pronouncements in the past, she made a request that all medications be halted and palliative care initiated.
This “nurse” and others had apparently failed to factor Mother’s dogged determination and resolve into their equations.
Thankfully, the grossly inappropriate and premature directives were not carried out by her physician of record; more than a year later, Mother is still very much alive.
But, she is certainly not the same.
Weeks confined to bed recovering from the infection had left her extremely debilitated. Her right foot had become permanently plantar flexed and was beyond the scope of physical therapy. So, in the span of three months, her life was dramatically transformed; no longer able to run the halls of the nursing home trying to find her way “home,” Mother had become effectively bedridden.
October 2009
“I am going crazy! That’s what I am doing! All I do – ALL day – is lie here staring at this ridiculous ‘popcorn sky!’”
Looking up, I immediately understood. Every minute of every wakeful hour of every day confined to that damned bed, Mom had no choice but to stare at the blank canvas of her textured ceiling that had – over a period of several months – become her entire world view. Who wouldn’t go stark raving mad?!
With a wheelchair now her only means of mobility, we took Mother outside later that morning hoping she could enjoy the beautiful fall day. The leaves had reached the peak of color with their resplendent shades of red, orange and yellow; it was the season at its visual best.
With Mom’s frustrating admission still fresh in my mind, it suddenly dawned on me that Nature had provided a possible solution. Gathering up a few handfuls of the brightest, most colorful leaves, I returned to her room. Standing on her bed, I then taped an assortment of the leaves to her barren ceiling, hoping beyond hope the small change would somehow help to break up the monotony of her days.
It worked.
While the change in her affect once she noticed the leaves on the ceiling was not dramatic, at a minimum, she certainly became engaged with “her leaves.” She might speak one moment of the need to “rake the leaves,” then immediately order us to “leave them alone!” She described them in detail to aides, and even counted them for me on occasion.
It amazed and pleased me that a ridiculously simple idea could have affected a difference for Mother as she spent hours alone in silent contemplation of the leaves; most poignant for me, was when she would lie completely still in her bed, smiling and staring endlessly up at her colorful Popcorn Sky.
Emboldened by this minor success in the Fall, December ushered in the anticipation of yet another Christmas season and an even greater transformation of her ceiling for the holidays. A nursing student, Tracy, and I spent a Saturday morning listening to holiday music while hanging a colorful assortment of ornaments throughout Mom’s field of vision; a woolen Santa and Snowman, mittens, snowflakes, and shiny, colorful balls were suspended at various levels about her bed.
It was pure fantasy and she loved it.
April 2010
Winter finally seems to be giving way to a much anticipated Spring.
In the coming days, the snowflakes and snowman will come down from that ceiling to be replaced by suspended mobiles of pictures from her own gardens as well as much loved Sunflowers.
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