A few days ago I reached for my cell phone unconsciously intending to call my brother, Don, in his rehab facility in Tustin. CA. He suffered a major stroke in July 2016. I was accustomed to calling him around three times a week to see how he was doing from loss of his left side—arm and leg––as he was trying to return to a normal life. The stroke did not harm his brain function…he was still the same old Don…sharp as a tack.
Wait a damn minute!!
My brother, my only brother, Don, had died a few days before.
My emotions of his death were still in lockdown. I was experiencing the first stage of grief in the death of a loved one. The emotion felt is what psychologists say: “Disbelief.” Upon returning to my Florida home 2900 miles away, I was still in shock and my refusal to accept his dying right in front of me.
I was at his bedside in the Intensive Care Unit (ICU) at the University of California Medical Center in Orange, CA when he passed. His family, his wife, Kathleen, her two daughters, Summerly and Lacey and son, Landon, were there including his only immediate daughter, Jennifer and myself. We were all there around his bed when Don gave his last breath.
It was West Coast time around 7:45 PM. The nurse technician has taken his breathing tube from this throat around two hours before.
The decision was made by the family to let Don go after an agonizing week of Don being kept alive by machines. In the beginning Don suffered some sort of seizure in his rehab quarters. The staff called 911 and he was taken to ER at the small hospital at Orange County.
His immediate family at ground zero there made the decision to take him to the major trauma center in the area: the UCI Medical Center. He was transferred under the best of circumstances but such transfers are always traumatic for patients in Don’s condition.
The transfer complete. Numerous doctors and nurses in a special recovery ICU room in the critical care unit hooked up Don to the vital instruments and apparatus necessary to preserve his life.
I arrived on Jet Blue the next night to begin the most heart breaking experience in my seven-decade life. After seeing Don defendless and subservient to man’s machines, unable to talk, breathing only with life sustaining oxygen with a tube down his throat. His system drowning in pain killing drugs, I realized his recovery from his initial stroke in July 2016 was a pipe dream.
Earlier, I was working with my brother on the phone and even a weeklong visit in April of this year to his rehab center to try and neutralize the depression he suffered early on.
He had hired two rehab specialists to help him weekly getting mobile again. That was progress, but the real breakthrough was when he was assigned to a progressive rehab center locally to aid people with brain injuries such as stroke. The center is called “High Hopes”. As its name implies, for persons like Don it was a Godsend.
The center, financed by celebrities and the well to do, has the latest equipment to bring critically brain-injured people back to leading a halfway normal life. For Don the equipment was making him mobile again…walking and utilizing his left arm again.
“High Hopes” has the latest ego-skeleton equipment that forces patients to walk by electronics. The equipment literally convinces the patient’s brain that he or she should be walking again. Don, I recall told me after a exhaustive session on the phone, “I just walked four football fields!”
Unfortunately, Don’s recovery from his first stroke was not to be.
Now, Don was admitted to the critical care center in the UC Medical Center and the family was assembled including Don’s long time friend and his help agent, Tony.
The time came the second day for an assessment by staff physicians of Don’s condition. Dr Levan was head of the ICU department and thirty-year veteran treating stroke victims with cases similar to Don’s.
The doctor’s presentation of Don’s condition was extensive, enlightening and blunt. What happen? The doctor didn’t know. The images of what exactly happen to Don were unreadable.
Probably, according to the doctor, Don suffered a cardiac arrest. Whatever it was shut down most of Don’s vital organs. His liver was unworkable; water in his lungs caused him to have pneumonia. His damaged kidney would cause him to be on dialysis for an extended period, maybe always. Even his heart stopped beating for 10 minutes before he was hooked up to the respirator.He was unable to breathe on his own so the respirator would be necessary for, perhaps, the rest of his life.
He probably would not be able to continue his re hab to regain his mobility ever again from his first stroke.
Eventually, the doctor drove his points home that he would not be able to ever have a decent quality of life again.
The doctor sobered up all the family members and his friend, Tony. Even as this information from the doctor that had been extremely pointed and final, still some family members believed we should have a second opinion.
We did and scheduled another review the next day about Don’s condition from the incoming critical care physician coming on duty. He was to be instructed to review Don’s case and examine him directly.
Not a precise and extensive as the department head’s analysis, still the second doctor had a similar assessment. Too many bad things happen to Don’s systems during the second seizure to ever fully recover.
By the third day and another meeting with the Neurology team whose words as we all listened intently but echoed a similar bleak future for Don if he lived on. We discussed at length what that would be. The only option would be an immediate Tracheotomy operation. That is, creating a hole in his throat that a breathing tube would be inserted without the pain he was enduring presently with the breathing tube down his throat in his hospital bed. His best friend would become an oxygen bottle.
This would cause him with strong odds of artificially breathing the remainder of his life. The universal question the family was asking thru this emotional roller coaster was: “WHAT WOULD DON WANT?”
In the end, the family unit came together with the answer of what we thought Don would say. It was the final decision by the group adhering to the opinions of knowledgeable medical professionals who know more than we did who made our decision easier but not 100 percent for sure. We wretched the decision from our souls. We reasoned that Don would not want to be attached to machines the remainder of his life. He was an active guy, a million dollar producer for this company, loving the challenge of bouncing out of bed each day and working in the corporate world. He would never be expected to experience that lifestyle again.
When the time came, he passed easily impacted by the injection of morphine. The deep sleep came not hindered any longer by pain. We took turns holding his hand. We all cried as his face turned gray and mouth opened.
Seeing a loved one like my brother, Don, die after a predicable unrecoverable illness—no amount of intellectual knowing, understanding, or expecting can prepare you. My wish for my reader who have journeyed with me this far, is that you will never have to go through it and make a life or death decision as we did. But chances are, you will.