Category: Recovery from Serious Illness: Lyme, CIRS, & More

I will never forget Julia.  She had a petite frame, a blondish hue to her gray hair and a sweet disposition even with her eyes closed.  She kept her eyes closed most of the time in those days.  Oh what a sweet treasure it was when she would open her droopy eyelids, worn out from the years of looking at what simply did not matter anymore.  When they did pop open, her eyes were as blue as that of a spritely, young thang yet their life was no longer shining through their looking glass anymore.

Julia let you know what she wanted by the gestures of her contracted and weakened frame.  She held her arms in a flexed posture near to her chest and her legs were drawn up above the seat height of the modified geri chair upon which she sat, semi-reclined.  I don’t even think that her feet touched the foot rests most of the time:  pale pink padded foam to match the waterproof cover of the end-of-life bark-a-lounger in which she sat when out of bed.  Julie must have weighed 90 pounds when I met her.  She leaned to the right then to the left depending upon the position the Certified Nursing Assistants (CNAs) had plopped her in until nap time.  The frail bird of a woman was transferred to bed each afternoon at least an hour after lunchtime, to prevent regurgitation you know.  That is also when she would be checked to make sure her diaper was clean and dry.  If not before her nap, the CNAs took care of her diaper change later for a total of about three times per day.  To keep her “clean and dry” was the charge of the nursing staff of the long term care wing and staffing ratios made sure it that it probably did not happen any more than that for tender ladies like Julia who could not ask for more.

I met Julia while working as an occupational therapist in the rehabilitation unit of this long term care facility.  Periodically we would receive referrals for residents whose MDS (government mandated) scores triggered a decline in the functioning of a resident, requiring a screening assessment from a member of the rehabilitation therapy team.  This particular episode was likely triggered by weight loss which may indicate possible feeding issues.  Or it may indicate improper positioning in the geri chair restricting swallowing, restricting nutritional intake.  She was already seated at a “feeder” half-circle table in the occupational therapy clinic at mealtimes so I had seen her while I was eating my own lunch in an adjacent office.  My role would now become evaluating all of the factors in her decline once the screening assessment triggered an order for an “occupational therapy evaluation” then treatment.

Residents such as Julia are very complex for the reasons that I have already stated.  At some level, you must detach from the emotional impact of working with someone in the last stages of his or her life with advanced medical conditions and dementia.  Then again, when I got to see those blue eyes meeting my own brown eyes for a brief moment in time, I knew that there was more than a long term resident in front of me.  I was looking through those eyes to the heart of a woman who once was someone’s mother, another’s grandmother, a man’s darling and petite wife, and someone whom many once loved.  I loved those connections when our eyes would meet!

I am grateful to say that I don’t think that I ever lost sight of these defining “occupational roles,” the presence of one of God’s children placed before me, when asked to evaluate and treat a person entrusted to my care.  I am grateful for even the somewhat gross experience of feeding a shell of a person (which would have been required through the course of my intervention) even though she would likely spit up some of the pureed foods presented to her.  She probably smelled rank at times after an episode of incontinence when she could not communicate her need to “use the ladies’ room” after dining with the other “feeders.”  Arrrgh!  How I hated that label!

I would have initiated taking Julia to her hospital bed with one of the aides and assisted with “toileting hygiene” even though it was a “feeding assessment” because that care became a part of my job description too:  it would help me to evaluate Julia’s sitting balance/tolerance/posture, level of arousal with gross motor stimulation, righting and equilibrium reactions and more that influence a seated posture for the “activity of daily living” called eating.  How better to evaluate someone than within a real-life activity than to transfer her onto a vinyl mat . . . smelling like feces?  Helping Julia become “clean and dry” before the aides had time to do so after their smoke break always seemed noble as well . . .

Julia’s story had a sad ending.  I watched her continue to decline long after our occupational therapy sessions and staff training were completed.  Julia continued to require maximum assistance with feeding and eventually accepted less nourishment from the aides at mealtimes.  An astute and skilled nurse who loved the patients in the long term care wing determined that Julia had a fecal impaction and notified the family.  Julia had a “Do Not Resuscitate” order on her chart and the family were ready to let her go.  Perhaps the heartache of seeing her endure this end stage of life was just too much for them to bear anymore?  But the illness that resulted in her death was not a major medical event.  It was a fecal impaction.  The end of her life was gross and undignified.   The gracious nurse personally assumed the responsibility of keeping Julia “clean and dry.”  This time the toileting hygiene that was needed was in her mouth . . .

Perhaps you can imagine what I am describing here without having to write another word about it.  Many who knew and cared for Julia were deeply grieved at her passing.  To discuss her quality of life, the anguish of an end-of-life decision, or the crises of the skilled nursing industry is not the intent of this article.  My intent is to tap into the compassion I once felt on a daily basis that brought gratitude for the opportunity I was given to serve others in their time of need.  I did what I could, with what I had, to the best of my ability at that particular time in my life.  Caring for others kept my mind clearer of the whining that can occur for my own limitations, unmet needs, illness, and sorrows.  I don’t have that caregiver role right now.  Even so, I will never forget my experience with Julia and it is good to remember her on a day like today.

No, the hope I had that my pattern of noxious symptoms was changing did not last for more than two days.  Oh well.  I thought about deleting the blog from August 2, 2013.  If I had deleted it, I would have missed reaching deeper into my heart to find the memory of Julia who had taught me so much about life so many years ago.  In the larger scheme of things, two days with a few hours of relief is barely enough time to do anything, experience anything of lasting significance anyways except maybe a trauma of some sort.  I shall hold out my hope for two months!

In the meantime, I will open my brown eyes and see if I can find something else to focus on today.  Six-thirty in the evening is a great time to take a shower in the “p.m. shift” of my daily schedule so I can present myself clean and . . . pretty for my husband when he returns home from more noble activities.  It’s a lovely evening so maybe there is something I can do with it, even if it is sitting within view of the pretty gardens outside my window.  Oh how I wish you could see them!  There’s a hummingbird who is coming around a lot more now too.  Very cool.

See there?  I think I’ve landed in a better place after all.  We are “there” and it is meaningful after all.