When it’s time to say goodbye

I received a call last Sunday that Derek had taken a significant turn for the worse.  You may remember that he recently moved back to his hometown so his family could care for him since he's been so sick for the last two years.  Having only been back home for a week or so, I had hoped — against my better judgment — that his health would hold up for a while longer.  Sadly that is not the case.

Derek began having seizures late Saturday evening.  They continued through Sunday morning.  They moved him to ICU Sunday morning, but by then he was catatonic — near comatose.  The lymphoma in his head had continued to grow despite the radiation treatment.  In fact, it would be safe to say it took several leaps forward in size — the doctors called it dramatic growth.  It had moved beyond simply impacting his brain and thereby putting pressure on it and was now actually fully involved in his brain.  That means the mass had actually infiltrated his brain tissue.

He remained subjugated by his own mind until Tuesday, at which point he started speaking again.  That's when I saw him.  He was completely incoherent, unable to remember me or anyone in his family and unable to display any cognitive function outside of complete dementia.  There were moments of clarity, but they were short and rare.  Most of what he said was random, garbled junk that his mind was spewing forth.  There was no logical order to what he said.  He simply existed in his own world, almost completely separated from reality.

He even had to be restrained for a few days due to the violent outbreaks caused by his mental state.

As the week continued, his condition improved only slightly due in part to the increase in anti-inflammatory steroids he was given.  By reducing the inflammation around the brain, he was able to regain some clarity of thought.

But not much.

He would often forget where he was, that he was sick, what he had, and why his family was around.  His conversations were broken and at least half gibberish, random thoughts bubbling to the surface and unexpectedly interjecting themselves into his thought processes.

And that was only the beginning.

His physical condition began to deteriorate quickly.  Over the course of two days he had a significant outbreak of skin lesions.  He ran a temperature almost every evening despite the fact that no specific infection could be identified (although all the signs were there to indicate multiple infections were present).

Throughout the week I gauged how well his mental state had been restored.  Despite the physical ailments which seemed to be popping up from all directions, if his mental state was strong and he had clarity of thought, he would fight for survival.

To my dismay, Derek was already gone.  Although he regained some clarity of thought and was able to function at least partially well (in a mental sense), he continued to suffer from random amnesia, often forgetting where he was, why his family was there, why they knew he was sick, what had happened in both the near and far past, and, most sadly, he suffered from an almost Tourette's-like tendency to randomly and constantly vocalize the thoughts literally running through his head.  Some of these outbursts were questions about what hospital he was in, where he was, why his family was there, what did he have, and was it treatable.  Others were statements ranging from his disease to his sexual persona to his job — the job he lost in January of this year.

He often forgot where he was.  It was not surprising to here "What hospital am I in?" two dozen times in the same day.  It was also not surprising to have to repeat the same information many times before the topic changed, only to have to repeat it again later because he still could not remember the answer.

It probably comes as no surprise to anyone reading this, if you've seen the other posts about Derek, that he has HIV/AIDS.  His CD4 count is 23 (officially AIDS is anything below 200, and normal counts range from 500-1,500).  He has been suffering from opportunistic infections for the last three years and has been in the most violent throes of the disease for the last two years (hospitalized for about the last 18 months).

Having seen this before, I knew that the diagnosis of AIDS-related primary central nervous system lymphoma was an indication of the final stages of the disease.  How rapidly one progresses from there is individual — there's no one-size-fits-all prognosis.

In Derek's case, he would progress rapidly.

As his family is still coming to terms with his illness and condition, all of this seems very sudden to them.  I keep trying to help them understand that it's not sudden at all — we've been dealing with this for two years, most of which has been spent with him in the hospital and unable to care for himself or manage his own life.

So they are now faced with the most difficult test of love — when it's time to say goodbye.

I've made it clear to them that, having known Derek for the last eight years and having been through the horrible progression of the disease over the last two years, he's nearing the end of his journey.  Whether it was months or weeks, it would be self-deceptive to think in terms of years with regards to his remaining lifespan.  And Derek would not have wanted to have his life prolonged in this state, with no hope of recovery, with no hope of carrying on any semblance of life as he knew it, with a rapidly declining ability to differentiate reality from the deluge of waking dreams which now assault him so long as he is awake (and he can only sleep with the help of drugs).

And now the real challenge unfolds.

Derek is already gone.  In the last week I have realized that.  The man I knew and cared for and loved deeply as a dear and close friend is gone and will never return.  Who he is now is only a shadow of who he was.  Who he is now is not who he will be tomorrow or the day after.  From this point forward, each passing day will see a little (or a lot) more of Derek slip away, leaving behind a shell of the man he once was.  And his rapid mental decline is only a part of the issue as his physical state is following the same path.  His body is literally being destroyed from the inside out by multiple infections working on multiple levels.

The worst news was yet to come, though.

Tests indicate that the HIV infection is now directly attacking his brain.  So it's a mental double-whammy.  Not only is the lymphoma assaulting him on the macroscopic level, but HIV is attacking him on the microscopic level.

I've tried to make clear to his family that his mental decline will be rapid.  His physical decline will follow, but at a slightly slower pace.  This will result in Derek leaving long before his body dies.

So today I had a serious discussion with them about letting go, about easing his pain and suffering and letting him go peacefully rather than extending his life only to prolong his suffering.  This is a selfish act, and I know they don't wish to travel that road.

But they are struggling with the decision to pull the life-sustaining care while maintaining the comfort care.  They feel they need more time.  They don't want to let him go.

Love is a two-edged sword.  On one side we have our desire to ensure the longevity of a loved one.  On the other side we have our desire not to want them to suffer, not to prolong their misery.  It takes true love to know which side must be used when and to have the strength to use it accordingly.

I believe I've catalyzed the discussion and pushed them in the right direction, but the final decision is theirs.  I only hope they love him enough and can find the inner strength necessary to do what is right.

I know that the Derek I knew is already gone.  The part of him that remains — this shell, this rapidly declining specter of the man that once was — deserves to be set free.  This is what he would want.

I weep for Derek.  I weep for what is already lost and what is to come, whether prolonged agony or a quiet, comfortable move to final peace.  I hope it is the latter.  He deserves that much.

As the Indian poet Rabindranath Tagore once said, "Death is not the extinguishing of the light… it is the putting out of the lamp because the dawn has come."

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