A Hard Lesson

Years before arriving at Thetford, Fred suffered a subdural hematoma (a blood clot to the brain) that left him with extreme anxiety, memory loss, difficulty in speaking and a loss of concentration.  And before this dramatic event, he had a long history of depression.  During his early days at Thetford, he walked and walked around the house, jiggling and breaking windows and doors, unable to engage with those around him.  He tried to sit on a chair that was already occupied, unaware that someone was already there.  His behavior was obsessive, like a machine, either on or off without any subtlety.  He moved for hours, sometimes bracing himself against the wall, through each of the rooms of the house, before returning to his bedroom to collapse into his bed.

Over the course of a year his physician found a cocktail of medications for anxiety and depression that provided him with moments of calm in the midst of his constant motion. On his walks around the house, Fred began to stop, sit down, engage in a game or have a snack, before getting up and moving on.   He watched his favorite football videos with the staff.   He took weekly outings with a companion to a barbershop, to a restaurant, to a park. His restlessness did not end, but there were interludes in the endless cycle of confusion and anxiety.  There were periods of calm.   To those who saw him only occasionally these changes may not have appeared dramatic.  He was still a man with a severe brain injury and dementia who was often, “not present.”  Periods of engagement and awareness came unexpectedly.  He was intensely aware, and then he disappeared again.

For reasons beyond our control, Fred had to change to different physician.  On his first visit to his new physician, he was uncommunicative. The physician concluded that he was over medicated and made significant changes to his medications. We were concerned by such rapid changes, especially because, in our view, he was doing so well.  The doctor insisted that the changes be made and Fred’s power of attorney accepted this decision.  The dosage of the anti-depressant was reduced and he was switched from one anti-anxiety medication to another.

Very quickly Fred began a steady decline.  He could not sit still.  He could not concentrate on cards or other activities that he had loved.  He did not appear to know his caregivers.  We made frequent reports to the physician.  After two months, the physician responded to our alarm by increasing his antidepressant medication back to it’s original dosage and returning him to his old anti-anxiety medication.  But his symptoms were so extreme that we called him the next day.  We needed something more immediate.  Fred was not sleeping. He crawled around the floors and obsessively rubbed his skin creating open wounds.   The doctor’s decided to discontinue the anti-depressant – no tapering off, just complete withdraw.

In a phone conference, I questioned the doctor, “Is it possible that this radical change in behavior is the result of medication changes?”  I had seen it happen many times before.  But the doctor was adamant, “ No.” he said.  “Fred is old and sick and just getting worse.”

Fred’s decline was immediate.  He was so off balance that he could no longer walk.  He continued to rub his skin, pulling his bed covers off and on. We requested hospice care, knowing that they would actively treat his agitation in an attempt to make him comfortable.  He died two weeks later.

When I think about the trajectory of this story, my emotions range from disbelieve, to anger, to sadness.  My initial response was to blame his doctor and his power of attorney.  But that would miss the bigger issue.  To understand Fred and his situation required time patience, and perhaps, a greater compassion than this physician or a busy medical practice allows.   People like Fred, who are beyond rescue, are often pushed to the margins.  When there are no easy answers, it is easier to look away.   To do otherwise, requires a commitment and a practice, something that our culture does not always teach us to do.

Fred’s story is a reminder to me to stay present to the people I serve. Even with my commitment to care for people who are greatly impaired, I lose my attention and I must remind myself why I am there.   It is painful to see suffering.  It is painful to be reminded that what is happening to someone else may one day happen to me.

To make a connection with Fred required me to take the time to look deeply into his eyes, even when I was not certain who I was seeing or if I was being seen. Seeking to touch this man’s humanity helps me to understand my own.

 

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Comments

  1. Patricia Wudel says:

    Emily, friend. Thank you. It’s as though your message is written just for me. Thank you. Bless you.
    Love!

  2. Paul Lichtenberg says:

    My deepest gratitude for your penetrating wisdom and more for your great caring to care; and even more for the awareness that gives you wisdom and allows you to care caring. Empathy. Empathy feels but not only feels; it thinks. But, true empathy not only thinks and feels its thinking: it acts and so expresses its feeling and thinking in the expressing. So often I have come across patients in therapy who have been, within the mental health system, “pushed to the margins,” even when not “beyond rescue.” It’s an old story and, sadly, getting older and seemingly intransigent: a system, and so, the individual practitioners within that system, offering help but not care. To care “requires a commitment and a practice.” As you say. A commitment and practice dedicated to all beings, and especially beginning with one’s own being aware, first of self, and then, of suchness in the dissolving of self centeredness. In the suchness, our dismay and anger, and, at times, overwhelming sorrow, always guide us back to the small acts that move the dismay, anger, and sorrow towards meaning and change. We are all Fred. We are all the ignorance that drives the failed systems. We are all Emily caring.