Days 138- 141 The Walton Hotel

On Monday, Jan. 30, Patti & I took the Skytrain down to the offices of the ACT on Powell St, for a first meeting with them with Lee. Lee and his nurse, were late but we were met by Sri Pendukar, the Coordinator, and Bob McRae, Community Mental Health Worker and we spent the wait for Lee getting updated as to what was going on.

Last week, Lee had kept, or rather been taken to, his appointment with Dr. De Wet on Monday. He was told that he could drink beer in moderation, and he had agreed to stay off the hard stuff and had apparently done so. His Ritalin had been increased to 20mg. x2 and they felt he was not quite as depressed. He had refused to obey the summons to appear in court to answer the shoplifting charges on Tuesday, but they felt this was no big deal. What can be done to him? Suddenly Doreen Littlejohn, the Nurse arrived with Lee clumping along behind her. I looked at Lee closely and I almost felt ill.

At first I thought that his face was covered in a thick coating of beige colored Calamine lotion or a Dovanex cream or something, but as he got closer I could see that his psoriasis was in full bloom. His whole face was a dirty beige colored mask of dead skin that had even invaded his eyebrows and ears. He had an almost bewildered lost expression on his face, and his eyes were bloodshot and red rimmed. They were focused, attentive, but totally non-reactive. You knew you were getting through to Lee but only by his answers His face and expression showed no reaction at all. How was he responding? Favorably? Negatively? Neutral? His face gave no clue to his response.

His few chin whiskers were nearly 1/4” long. He took off his coat, rolled up his sweater sleeves and began to scratch at his arms. He was soon surrounded by a blizzard of dead flakes of scale from arms that looked like ugly lizard skin. A diamondback pattern of wedges of plaque edged by inflamed red cracks showing angry colored lower dermal tissue. He was totally neglecting his personal hygiene and he just didn’t give a shit. He immediately asked for his money and I asked why he didn’t go to his bank. He was broke, as we had suspected, and I proceeded to make it perfectly clear that he was not getting any money from me. He had given me $800. I told him we had spent over $300 on him during his hospitalization for cigarettes and other stuff that he had wanted. That left less than the $500 Lee had expressly told me to keep in reserve to pay for his death expenses. I intend to keep what is left to bury you as you wanted. I'm not going to give it to you now because you'll just buy booze and piss it up against a wall someplace. Lee had almost no reaction, no argument, just calm acceptance. Most unusual!!

For the first time in all our dealings with the Medical community we were included in the decision making process for Lee. I mentioned our problems with St. Paul’s Hospital and “Confidentiality” matters. Within minutes the appropriate forms appeared, were explained to Lee, signed by Lee, witnessed by them, and inserted into his file. In a matter of minutes they gave back to us the right to be informed and involved in the care and management of a son who simply could not look after himself and who was a burden we could not handle alone. They helped us as a family in trouble and we are forever in their debt.

These people were professional problem solvers and it was quite amazing to watch a well coordinated team at work. Sri offered to find out the legal steps I needed to take to get access to Lee’s Medical Files, he would straighten out a missing rent cheque with Welfare, Bob McRae would deal with the Summons and any court matters that arose, but the one in the team that impressed us the most was Doreen Littlejohn, R.N., P.N., Lee’s nurse. She dealt with Lee in a most professional manner. She was very gentle but quite firm in her talk to him. She explained things to him in an adult manner about what the plans were, but she included the reasoning behind these future things in a most precise and logical way. I wish that I could have communicated in the same manner but I think that my expectations of Lee got in the way. She dealt with and accepted Lee as he was, she had known him no other way. I could not forget what he was, and I didn’t really know what was left. Fragments.

We left the meeting and Doreen drove us to Lee’s room at the Walton Hotel. It was better than we expected. The room was upstairs over the stores that line East Hastings Street. It was small, clean, bare, but it had a fridge and there was a shared kitchen down the hall, and a large bathroom with tubs across the hall if he ever decided he would use one. Doreen left us and we took Lee out to lunch at the Japanese Restaurant on Davie St.

When we left the restaurant and were waiting for the Davie St. bus, we were joined at the stop by a young woman in her mid-20’s. She was quite obviously mentally challenged, simple, in my vocabulary, and she stood staring at Lee with intense curiosity.

“How did you get all that mud on your face? she asked with childlike candor, “Did you fall down?”.

Lee did not explode as expected. He patiently explained that it was psoriasis, and gave he a two minute lecture on the disease and its probable causes. The poor young girl was all flustered and embarrassed but Lee was very gentle and assured her he was in no way offended. He continued on as if nothing had happened and we dropped him back at the hotel..