The Sister Bear Speaks

While my brother’s fiancé is there at the hospital with him in the thick of things, his next of kin is a bit upset.  I am too upset to make any rational decisions.  The feelings run deep with me.  It’s all I could do to be polite on the phone today to the social worker from the rehabilitation unit where Mike is hospitalized.  At least Steve and I have the weekend to sort things out . . .

Very likely Mike will get booted out of the hospital next week and sent to be housed in a nursing home without additional rehabilitation services.  His insurance is “Medicaid Pending” and his requiring of 24-hour physical care post discharge, a situation that cannot be met at home for valid reasons, is pushing the hospital to discharge him from their care.  I don’t get it.  In my 30+ year career in rehabilitation as an occupational therapist, the discharge criteria virtually always hinged on a lack of progress, not the particulars of discharge planning.  It’s a new day:  a new reality.  If you can’t do what the government-driven healthcare system wants you to do then I guess they can wash their hands of you.

Perhaps he will go to a nursing home or perhaps by some miracle the Veterans Administration (VA) will accept him on such short notice.  If the decision is the former, he will be fed 3 meals per day, kept clean and dry, and left to sit slumped in an overstretched wheelchair or geri chair in front of an out-of-tune entertainer from the long term care circuit with a pair of maracas shoved into his functional hand.  The wailing of the demented residents will woo him to sleep at night as he tosses on his waterproof mattress to get comfortable around the bedsores that no one will find until it is too late for healing.  Thickened Pepsi to drink?  Not a chance.  At least until his fiancé cleans up her make-up from crying long enough to ignore the swale of urine stench long enough to bring it to him.  God bless her faithfulness visiting every day through this incredibly stressful ordeal!

Or perhaps it won’t be that bad.  Maybe he will get into a VA rehabilitation facility with little red tape and get stronger.  Regardless, the hope of at least a few weeks of physical, occupational, and speech therapy has vanished for the time-being.  And Michael has no idea yet, what is about to happen to him next week.  I left a message for his saint of a fiancé and she has not gotten back to me yet.  Maybe she is in as big of SHOCK as I am.  Maybe she is exhausted and horrified from touring nursing homes closer to where they lived in the “thumb” area of Michigan.  I don’t blame her for taking a little time for herself to sort things out.  My heart goes out to Lisa.  She has been through so much these past two weeks as her life has changed forever.

As for me, 200 miles to the south and struggling with four hours of seizure attacks multiple times per day, I am overwhelmed with the stress of it all.  Just seeing the missing flooring in our bathroom from yet another mold remediation project is enough to stub my toe even when the light is on.  Somehow I completed a few errands outside the home this afternoon and made a simple dinner.  I talked to a few family members who offered mixed consolation while I was stepping on the elliptical for 20 minutes, phone in hand.  Geez!  I haven’t used that thing in a few weeks!  I must be stressed out.  Thank goodness the nightly seizure attack episodes haven’t fully ramped up yet tonight:  I needed to talk to you, Gentle Reader!  I started to type and there you were.  Thanks so much for being here.  I can barely speak I am so very upset.

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Life goes on despite the drama of the moment.  If Steve and I don’t impulsively drive 3 hours north to go to the hospital tomorrow and I’m stable enough, we will attend the 50th wedding anniversary open house of some friends.  It will be good to enjoy some Christian fellowship.  Then maybe my beloved Steve will start to work on the bathroom floor tile project and I’ll put together the jewelry orders that have been sitting at my work table this past week.  Lord willing I’ll continue with the Spring clean-up of our gardens and Steve will mow the grass for the first time this year.  Looks like the narcissus will be blooming within a day or two with their yellow-throated happy faces reaching up to soak up the sun.  The sunshine will feel good on my broken frame as well and I will enjoy the freshness of the air this time of year.  There’s no better hue of green than that of the tender leaves emerging from their Winter slumber:  truly lime, truly sublime too.  Some call it “horticulture therapy.”  Gee, maybe I should go right now poke my finger in the dirt of the violets waiting to fill the self-watering planters I thought I might plant tomorrow . . . I need a fix of something and a shot of tequila is out of the question these days . . .

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Please pray for us.  This sister bear is hurting more for her brother than anything right now.  My beloved Steve has been so loving despite the challenges of my illness, demands of his work, and his other responsibilities.  Lisa has got to be struggling as well, balancing work, the care of her teenage son (Alex), and assuming increasing responsibility for Michael’s affairs.  She and Michael have known each other almost 7 years.  Her 13 year old son has a great relationship with Michael too.  Oh Lord, hold us all closely this night.  Help us.  Show us Your love, mercy, and grace.  Guide us with wisdom.  If it is Your will, heal my brother from the effects of this devastating stroke.  Comfort him as he realizes all that has happened to him and show him hope, be real for him on his bed of sickness.  He has reached out to you in his time of need.  I am grateful for this and grateful that you are here with us.  And thank you for the encouragement we find in Your Word:

16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  (2 Corinthians 4)

In Jesus’ name I pray.  Amen.

Michael George Lech
Michael George Lech

 

So where are we now? Much better than “clean and dry.”

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.hummingbird