When death is no longer an option

Who was it who said to “start with the end in mind?”


Well the “end” of everything in life as we know it will not be death per se but the second coming of our Lord, Jesus Christ. He will be bringing about the Great Tribulation, reign on Earth for 1,000 years, bring about the death of Satan and the world as we know it, and bring those who believe in Him to the New Jerusalem.  There we will reign forever with the One True God. I can’t wait!


And yet wait we must as it is not the time for His return. So working back from this end I will examine a few personal challenges the current day . . .


Brother Mike

Incredibly with a remaining part of one of two carotid arteries, my brother is making slow progress (after a massive stroke two weeks ago). As it turns out his progress may still not be enough to keep him longer in a rehabilitation facility. Enter here the plight of the uninsured. Decisions about his care will be made by a team of therapists who are required on Wednesday to make an “educated guess” as to his the outcome of his treatment 2-3 weeks from now. Healthcare policy largely mandated by the US government requires them to make this determination. Today the Lord led me in “buying” him 3 more days after negotiating with the Physiatrist on Michael’s unit. Go Sister Bear, occupational therapist.


Overall it looks like Mike will be discharged soon to a nursing home for placement and not further rehabilitation. This would be sad. His beloved fiancé, Lisa, is doing the best she can to juggle her own responsibilities, visit Mike at the hospital an hour away from their home, and complete paperwork/phone calls/research/etc. needed for his discharge planning. He would not likely receive therapy services thereafter until his Medicaid kicks in; when it does start the amount for which he is eligible could be limited. I just hope they get him the proper wheelchair, feeding instructions, and do more than keep him “clean and dry” in a long term care facility. I don’t have high hopes for this at the moment.


In time perhaps Michael will be able to receive skilled therapy services and return home. In time perhaps Michael’s eligibility for VeteransAdministration and community services will be determined. To return home he will need to be safe enough to be left home alone when Lisa is at work while she graciously continues to provide for both of their needs in addition to her 13 year old son. We are all praying for them at this incredibly stressful time in their lives. My burden from afar (3 hours by car) is light by comparison. Sure I am making a few phone calls, found a family member with a commode, and am working on locating a walker but that is small compared to his incredible care needs. I do pray that some additional resources appear soon . . .


Sister Julie

This past weekend was a tale of two extremes got me. I started drinking Bulletproof coffee this past Friday: Freshly ground-and-brewed, mycotoxin-free, Swiss water decaffeinated coffee with ghee (butter) and MCT (derivative of coconut) oil. Everything gets blended in our Vitamix for a frothy hot drink that is quite good. (Remember, I am used to consuming unusual foods these days!)   I had also begun taking a special formulation of B vitamins from Dr. Amy Yasko’s website to support some nutrigenomic issues. (Since the Functional Medicine MD set me adrift last week I struck out on my own for new solutions.) Saturday was an incredible day: waking up without seizures and enough energy to get showered and dressed before 10:00 a.m. just doesn’t happen for me! By 10:30 a.m. I had joined my hubby in cleaning our garage! Four hours later we were at a logical stopping point with the project nearly completed. We will recycle, discard, or sell either online or at a garage sale a goodly amount of items we no longer need. Ahhhh. Feels good.


Then comes the other extreme: almost 2 days with intermittent seizure attacks and bedrest. Crap. I guess I should have worn a mask when cleaning the garage? Maybe I shouldn’t have increased the MCT oil to twice per day? Or maybe the greatly increased activity level was just too much for this tender frame? Crap again. This is such a high price to pay for just taking care of our home. I enjoyed my time working with Steve so very much. I love doing projects with him! It had been soooooo long since our last big deal together . . . except for maybe driving up to Michigan to see Mike 2 weeks ago. Yeah that one took its toll on me as well. Crap, crap, crap.


So the worst case scenario for my brother is another stroke or even death. Since he appears to be stabilizing and improving I can set those fearful thoughts aside. I am quite confused about the Lord’s plan for all of this yet I choose to trust Him anyways. And as for my own illness, well, I guess the moments of improvement give me hope for my own recovery someday too.


On Sunday I decided to donn my firearm when Steve was selling some items from our home. He had opted to have the buyers meet us at the house. We took some precautions and everything worked out fine. His son, Daniel made out like a bandit (!) and we are pleased to have made it happen for him. But as that 380 pistol passed from my hand to its hidden resting place later that afternoon, I had to pause for a moment. At another time in my life it would have been dangerous for me to have a firearm in my possession. I had not yet learned how to shoot a gun, been taught gun safety, secured a carry permit, or decided for sure that life is worth living no matter what the current crisis.


You see I have faced overwhelming stressors in my life many, many times before. One time I had to ask a boyfriend to stay with me because the emotional pain that I was enduring was so great that I did not trust myself with my own life. I feared what I might do if I were to be left home alone. Flash forward about 15 years and that trust was tested once again. Gratefully eight years later, the overwhelming trauma of painful, daily seizure attacks, my brother’s stroke, and so much more is met with a solid faith in the Lord Jesus Christ and His plan for our lives. He is faithful. I trust in His power, His sovereignty over my fear, my pain, my doubt. Overcoming the traumas of the past by the grace of God taught me that. My firearm is for protection and nothing else.


When in doubt, I often start with the end in mind. I have always been a future-oriented person which I consider to be both a quality of leadership and a source of considerable anxiety! Perhaps my writings could talk a little less about my vulnerability and a little more about the Hero leading my heart PERIOD. With the God of the universe at the helm of my life I have nothing to fear, nothing to doubt. I will be able to endure the stress and the stress will be less with my hands off the “trigger” that represents a need for action at the wrong time. To wait, to rest and languish in His loving care helps me transcend the suffering. He has held me close in the comfort of His wings in the past and holds me close in the present as well. Many folks yearn to feel His presence. Hey, I get to feel it every day! He makes Himself real to me every single day.


Lastly, the greatest manifestation of darkness in this life is death. One day all too soon His glory will replace the darkness with His consuming light. All things will be made new and we who believe will reign with Him forever! My brother and I will be made whole to love and serve our great God. Wow! So I pray:  Lord, help me to live this truth in today with hope and shining Your light for all to see. Thank You for being here with us in our journeys. If the load may be lighter, please bless us with Your healing grace and mercy. Until then, You are our King and praise be Your name, Emmanuel.   Love you, Just Julie


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