It soon became apparent to all that Lee had suffered considerable mental and neurological damage. He had virtually no short term memory, extremely poor judgment, and almost no insight at all when it came to the severity of his condition. We seemed to lose all control over the course of events. Knowing Lee as we did, we repeatedly warned the staff at the Hospital that Lee was not himself. Given his independent nature and contempt for any sort of constraint or restriction by “authorities” we felt there was an extremely high probability that Lee would escape any confinement against his will. Our warnings were simply ignored and our information pipeline seemed to dry up. During this period, Patti and I, his parents, were relegated to the role of bystanders with no input or control over events or Lee’s treatment. We became concerned about this exclusion and I contacted the Advocacy Group at People With AIDS. We were given to understand by them and other sources at the Hospital that he was 31 years old, of the age of majority, had neglected to file either a Living Will or to designate us as Medical Alternates and consequently as his parents and next-of-kin we had virtually no rights to any “Confidential” information, much less any control over his treatment.
In hindsight, this reluctance to involve us or inform us adequately seems to have been the result of an exaggerated importance of a finding, that Lee had a "problem" with his mother, in a report by Dr. Pezzot, a consulting Psychiatrist , who saw Lee briefly for a series of fifteen sessions during the period Sept. 17,1994 to May 4, 1995. This apparently bore great weight with the attending medical staff. Dr. De Wet, who had been Lee’s Physician since we brought him to Vancouver in 1991, should have known better. At one meeting with Dr. De Wet in early October I asked him “How well did you really know Lee?” to which he replied “Not very well. He was a very private person.”. Perhaps his "problem" with his mother, and the ignorance of both the staff and his personal Physician as to his personality and possible behavior could have been minimized by an equal importance being placed on another section of the same report which found:
" He could be quite impatient with both himself and others, was not big on trust, did not reveal too much too quickly and checked everybody out before disclosing any of his inner self. He had to decide whether they deserved to see this side of him or not. Hurt, anger and being taken advantage of abounded along with a sense of not being respected by others. The sense of having nobody on his side and not being accepted for who he was intensified loneliness and isolation. An ongoing concern was that no one understood him. "
Patti and I understood Lee, only too well, but we were excluded from the information loop, and no-one listened to our warnings about his mental problems and refusal to submit to authority.
On October 16th and 17th, Lee “eloped “ from the ward, went down to his bank in his hospital garb, and hit his account for several hundred dollars. He was returned drunk to the Hospital each time. Patti stormed down to St. Paul’s and demanded to see who the hell was in charge. She was seen by Dr. Onrot, Chief of Medicine on 7C, who quite bluntly stated that because Lee was capable of escaping, could navigate through traffic to the bank and the Liquor Store, and could use the money he obtained, then in the opinion of the Hospital, he was capable of functioning in the community at large and as soon as arrangements could be made he would be discharged. End of consult.
Patti and I were at a total loss as to what to do. It was obvious to us that Lee was not competent to survive on his own, that his mental condition was far from normal, but no one at the Hospital would listen, and they were planning on turfing him out in the street. How the hell do you get through to these people?
The next day Lee again eloped from the Ward, again hit his bank, and was missing when Patti went in to visit him in mid morning. She spent the morning looking for him in the downtown area, periodically checking back at the Hospital. Shortly after lunch he was returned to the Ward by the Police with his chin split open.. He was seen with Patti by Dr. Schick, another consulting Psychiatrist, who asked him about his exciting afternoon and how he had managed to split his chin open. Lee stared at him in disbelief and said “I don’t know what you are talking about. I was alone here in my apartment all day!”. He admitted to thinking about suicide all the time and was again "Certified" by Dr. Schick who also assigned a 24 hr. nurse to him.
On the 20th of October, we had a meeting with the Staff on 7C that turned into a disaster. We had made it perfectly clear to all the staff prior to this meeting, that having Lee return home with us was simply not a viable option in his condition. They were to have made that clear to Lee. The meeting was with Drs. Schick and Wiseman, Psychiatrists; a Psychiatric Intern: the Hospital Social Worker; Dr. Broster, the 7C Medical Intern, and another member of the nursing staff on 7C. We introduced ourselves, discussed Lee's condition and answered a few questions put to us by Dr. Schick and Dr. Wiseman. Ten minutes after we started, Lee arrived in his PJ’s with his 24 hr. watchdog nurse. We no sooner began to discuss placement plans and options, than Lee burst into the discussion and said he didn’t see where there was a problem. He turned to me and to him the answer was easy. He started to cry and pled with me to just get him out of there, "Take me home until I can get an apartment, Please!! Please!! Please!!!”
It was humiliating. There I sat on a stool, in front of an assembly of psychiatrists and underlings, social workers, Doctors and nurses, who sat there in silence as if they were watching an interesting study in “Family Dynamics 101” while I had to tell Lee “No!” I felt like a bug on a pin, and by God they watched me squirm for a time that to me seemed like forever. We left Lee with his attendant in their care and custody and went home. I was totally outraged by this turn of events and laid the blame on the 7C staff. No one was listening to us.
On October 23 I phoned the ward for an update on Lee and was made aware that as of Oct. 17th, Lee had been put on AZT by Dr. De Wet. As of today, the 23rd., his 24hr nurse was canceled by Dr. De Wet and orders cut giving him day pass privileges. Something here is not right. To my direct personal knowledge Lee was totally opposed to AZT treatment. He had taken it for less than one week previously for his psoriasis, but had concluded it was “garbage” and had thrown the balance of his pills out. Further, his refusal to take AZT as part of his treatment regime had occasioned several confrontory moments with Dr. De Wet about which Lee liked to brag. He had refused to take it. He was Certified incapable of managing his own affairs, yet his personal Physician (who admits he doesn’t know him all that well, “He was a very private person.”), suddenly after another later Certification, deems Lee capable of reversing a strongly held and defended belief regarding the inclusion of AZT in his Meds. Just where does a Consulting GP get the power to cancel the orders of a Consulting Psychiatrist in a matter related to Lee’s psychiatric state? Who the hell was calling the shots down there?
Patti and I had long and heated discussions all this week. The only way we could see open, to regaining any degree of control over what was going on, was to take Lee home with us after our next meeting with 7C staff which was scheduled for the 27th. It would be virtually impossible but somehow we had to do it. Total control over all things related to Lee somehow had devolved to a physician who didn’t know him very well, and a collection of caregivers who had only known him since he woke up with his brain fried. Within this group I had doubts the left hand knew anything, much less what the right was up to. Decisions were being made in Lee’s behalf without either our knowledge or consent. There was no locus of control or information with whom we could communicate. I spoke to Lee on the 25th on the phone and told him we were going to take him home after the meeting on the 27th. When he told me he planned on coming to Surrey the next day, I told him not to. "Don’t screw up now Lee. Just be good for two more days and we'll get you out of there". The next morning Lee appeared in Surrey. He didn’t even remember talking to me the previous evening. He appeared rational, more in control and in tune, and Patti notified the Ward and then spent a good day with him. I drove him back to the Hospital about 8 PM but he again eloped and returned to the floor, drunk and in possession of more booze which was confiscated.
On October 27th. Patti and I went to the “Family Meeting” and as usual Lee was no where to be found so we started without him. I proceeded to vent all our angers and frustrations dealing with the Hospital. After an initial tirade about the demeaning and insulting experience I had gone through at the last meeting, the barriers finally started to come down. Dr. Wiseman asked at one point, " Do you think that Lee could be manipulating you?", and the light began to dawn for both Patti and me.
For all his mental shortcomings, Lee had managed to maintain a position as a middleman and thus was in control of nearly all of the information flow. Now he was absent and we started to communicate without his intermediary filter. They felt extremely badly about the position I had been put in at the previous meeting. Contrary to our understanding, Lee was fully informed as to all aspects of his condition and treatment, and had been told that going home with us was not an option. He was a 31 yr old adult and they had fully disclosed to him all data re his condition. Lee either could not, or would not, remember or accept the information. His medical crisis was apparently over and his life was not in any immediate danger. There was no evidence it was a suicide attempt that had resulted in his collapse and admission to St. Paul’s, but rather an encephalitis of unknown origin. As a result of this episode they felt he suffered from AIDS dementia. His short term memory was severely impaired as well as his judgment. His depression was apparently of long standing, and it had not responded to any of the drugs that they had tried. Lee was convinced that alcohol was the only thing that helped his depression and drank to excess whenever the opportunity presented itself. He showed no insight into either the severity neither of his condition nor to any consequences of his actions. He was depressed, had suicidal ideation but no active intent. Since he posed no threat to himself or others they could not hold him against his will. We were wrong about several things and during the course of the meeting they convinced us not to immediately pull Lee out. We badly needed supports if we were to take him home and these took time to set up.
They realized that he could not manage on his own in the community without support and supervision, but there was an acute shortage of space in any facilities that might help. Normandy Hospital and one other facility had long wait lists for the 15-20 beds available. Social Work at St. Paul’s was trying to get him in one of these facilities but a short term solution was not anticipated. As a result of this first honest communication with the hospital, we agreed to a delay in his discharge that would permit us to get the supports in place for when we did take him home. A 2-3 week transition period was targeted and during this period they would help in any way possible. Lee joined the meeting about 2PM and complained of being very tired. We later learned he spent the morning having a pre-release celebration in a local bar. He took the news that he was not going to be released immediately very badly, but by the end of the meeting appeared to be resigned to and accepting of his release plans.. At the meetings conclusion, Lee escaped as soon as we left. He phoned me in the evening and asked where he lived, and I told him to go back to St. Paul’s. He was subsequently located wandering the halls of the Hospital about 11PM and was returned to the Ward.
The next morning Patti got a call from a very nice lady psychiatrist who assured her that Lee was again in custody, had been “Pink” slipped, and this time there would be a complete assessment of his mental state. “Relax, he’s safe, have a good day.’ At 7 PM we found out that Lee had escaped before the slip could be implemented. He was returned to the hospital by ambulance from a bar about 10 PM.
The next morning, October 29, the Ward phoned us to let us know that Lee was being transferred to 2 East, the Psychiatric Locked facility. We were not told the reasons for the transfer but we welcomed the news. He was safe, locked up, and someone was going to properly assess and help Lee with his mental problems. We were wrong. We found out much later that Lee had been violent on his return to the ward . He had been placed in restraints three times. Twice he had escaped, and in the struggles to subdue him he had twice struck nurses. The Nursing staff on 7C were rightly upset and wanted him off the floor. He now posed a “threat to others”, was Certified, put in a straight jacket, and sent off to the locked ward, Psychiatry- 2 East.
This transfer to a new set of caretakers effectively ended the open communication we had just managed to establish with the people responsible for Lee’s care.
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