Days 142- 193 Decline

This week Doreen told Patti that they finally got Lee to take a bath. Three of them convinced him to let them help him bathe and rub his psoriasis down with Dovanex. She told Patti that the backs of his legs and other areas of his body that he could not easily reach were in far worse shape than what we had seen on his arms and face. How long this state of affairs would last we didn’t know. Lee went to court about shoplifting on Wed, Jan 30 this week, Legal Aid was somehow involved, and things were remanded until later. He had an appointment with Dr. De Wet on Friday, Feb 2 and he just flatly refused to go and there was nothing they could say or do that would budge him into keeping the appointment. He finally displayed some spirit and perhaps this refusal was the only thing left that permitted him any control over his life. More at this point I really didn’t want to know. The rest of my life, including my job seemed to going to hell in a handcar and I was just along for the ride. I had another large scotch, smoked a big fat dooby and just tried to get through the night.

On Feb 3, Sri called to advise me the procedures necessary to get access to Lee's hospital records and to update me on Lee's progress.

On Saturday, Feb. 4, Lee called and wanted to come out the next day and get some money for groceries but his call home was a waste of time. I refused him. We were already aware that at mid-week when his welfare office was changed, he had gone to his new office and conned a new set of players into giving him a cheque which Doreen told us was already spent on booze.

On Saturday the 11th Lee came out to Surrey and visited us. After a late start he finally arrived about 3:00PM and he hadn’t changed much from last week. His face was still a terrible crusted mess of sandy colored flakes, but his arms appeared improved. They were still a fiery red color, but they were smooth, clean and lubricated. We went to Costco before he came and got him a nice little 13” color TV. I think that was the best thing that has happened to Lee in a very long time. He was thrilled, and couldn’t wait to get it home and all hooked up. He did not want to go shopping as we had planned, so we sat, drank beer, and spent the evening talking and waiting for supper time and a good feed of lasagna, and a few things began to clear up about his existence..

Lee was probably the least depressed I have seen him in a long time. He was depressed, but it was almost as if he had detached himself from that depression. He was aware that he was depressed, and while it was irritating and a real pain in the ass to be depressed, the depression was a lot better than it had been previously, so what the hell. One day at a time, and all that. Somewhat philosophical and perhaps I was all wrong. He had many gaps in his recent history, and I began to think that part of Lee’s problem was that he couldn’t keep things in their proper time sequence. He could often remember events but he was not at all sure when, or in what order, they occurred.

Sometime back, Lee’s best friend James commented that Lee seemed to be cutting himself off from his past, and this seemed to be true. Lee appeared to have absolutely no interest in anything from his past. I asked if he would like his favorite picture taken down and hung on his wall. Not to bother. His trophy cow skull was a matter of indifference, his candles and holders were of no interest at all. He took home with him only a couple of disposable razors, 5 cans of Advera, ( a new dietary drink supplement that we got from SFSS ), his duvet and sheets, pillow, soap, a loufa sponge, and of course his new TV.

We left him at the Walton about 10:00 o’clock, comfortably ensconced in the middle of his bed, channel surfing the 40 odd channels now available in full glorious 13” Technicolor. I believe this was the best present we ever gave Lee. His pleasure was that of a small boy who just can’t wait to get at the controls of his new toy and Dad has to set the darned thing up first. I simply cannot explain how deeply this affected me. After all this time and pain, a simple gift, a good supper made by his Mom, a reasonable 5 beers over as many hours, and an afternoon and evening of honest and sometimes emotional conversation with us had given Lee the first pleasurable day since all this current shit began to happen. I hoped it was only the first day of many.

For the next couple of weeks Lee managed to survive with the help of ACT but slowly and surely he began to deteriorate. Patti and I had long suspected that the a significant part of his problems was somehow connected with his hypothalamus. As far back as the previous spring he had developed an increasing craving for chocolate. During his stay on 2 East he developed an almost insatiable appetite for coffee, but not just plain coffee, stronger and stronger coffee that was eventually so black and bitter that only he could drink it. His cigarette consumption kept increasing until it was not unusual for him to go through 4-5 packs in a single day. Trying to pay for his coffee, cigarettes, and Hagen Daas Chocolate Chip Chocolate ice cream was a major strain on his finances and severely cut into his booze budget. He was chronically short of money to pay for what he believed was the only thing that helped his depression, and he never gave up in his attempts to get "his" money back from me.

On the 13th of the month Lee went to Court re his shoplifting charge while at Normandy and he was given a discharge. He was very relieved that he wouldn't have a "Criminal" record. I don't know what else they could have done. He was already being punished enough.

We had Lee out for the weekend of Feb 17 and it was a good visit. Patti managed to get him to bath and then took him out to the mall for a haircut and a shopping spree. Lee seemed to really enjoy himself, and when we took him back to the Walton on Sunday night, was extremely pleased when I managed to debug the TV and remote control that somehow he had managed to screw up. We showed him how to operate the cassette/radio we had gotten him so he could listen to his music, and when we left he was comfortably ensconced in bed with his headphones on listening to his beloved Bach in glorious stereo.

During their shopping spree on the weekend Patti had taken Lee to try and find him a better pair of shoes. They had not been successful, but while they were in the Bay, Lee had spotted a pair of "Wolverine" shoes that he simply fell in love with. They were priced at well over $100 and were simply too expensive. Patti explained the situation to a saleslady who told her that they were going to be on sale at half price on Monday and agreed to put a pair aside until then. Patti picked them up on the Monday and Lee was thrilled to get them the next weekend.

A relatively quiet period followed. Lee seemed to settle down and we got through the next couple of weeks without any major disruptions, but Lee was changing.

All through this period, Patti and I had really been communicating about Lee, analyzing and trying to figure out just what was going on, and how we were going to handle things in future. She, with her usual common sense, had me contact the Employee Assistance Plan which was available through my Extended Benefit Plan at work. I did so, and was put in touch with Randy ? a Psychologist/ Counselor who did help us. He advised me how to prioritize all the stressful crap and pressures that were just dumping on us on an almost daily basis, and he assisted in the analysis of these categorized stress factors. He advised me that Patti and I were going to have to gain control over our relationship with Lee. Looking back, Lee had been in control of our lives ever since his diagnosis of HIV +ve in 1988. He gets peripheral neuropathy and can’t work in Calgary, snaps his fingers and good old Dad drags his trailer to Calgary in freezing Nov, 1991 and relocates him, no charge, to Vancouver. Patti & I give up a nice apartment for a dump duplex so he has his own room and the wheel just kept on turning. Move him downtown when he’s better and again and again. Always available for a short term loan of $20. On and on and on, Lee is controlling us. We had to take the initiative and get control of Lee.

I think that the almost endless recitation of calamity after calamity almost blew Randy’s socks off. On my second or third visit he stated that he felt I was indeed under a great deal of stress. Then to my amazement he asked me, “What personality traits do you have that have enabled you to hold up this long?” Floored me. Good question. Simple answer. I had to think a bit and then told him,

" Randy, it's obvious that we differ greatly in our ages, our backgrounds, and in our lives and education. You should know better. Coping with bullshit in your life is not the result of any personality trait, but rather of experience. Since Patti and I have been together, there have been three ovarian cysts, hysterectomy, bad back, foot surgery, lost jobs, moves, all kinds and colors of disasters in our lives. From champagne to pork and beans and back again. Shit happens. You deal with it".

The second week of March the phone calls began to come, slowly at first but then increasing in their frequency. Lee left messages on the answering machine. "I am coming out to Surrey. Leave the key with Nadia next door. It doesn’t matter whether your home or not"; Not asking but telling, demanding, setting terms, giving orders. Bullshit!!

On Sunday, March 10th, my brother Larry and his wife Janet arrived and stayed with us overnight. They were going to a trade fair at BC Place on Monday but they were free in the afternoon so Patti met them downtown and took them to see Lee. It was rather cruel on my part not to prepare them better as to Lee's condition and appearance, but at the time I was mad at Janet for what I perceived to be "sticking her nose into our business". Some months previously she had, without consulting either Patti or I, come up with the idea of paying the fare for Lee's sister Robin and his cousin Cindy to come from Toronto to visit Lee. She had no idea of the degree to which Lee had deteriorated and had not considered the impact such a visit would have had on Lee, Robin, or Cindy. Lee and Robin, as siblings, had a close love/hate relationship that Patti and I only vaguely understood, but they deeply cared for each other. Lee had helped raise Cindy in Mulhurst, was perhaps her only true friend, and he loved her deeply. To see him in his condition would have been the last thing he wished, and the two girls, each of a sensitive nature, would have been devastated. I had heard of the plan through my mother and had immediately phoned Janet and scotched the idea before it could be implemented.

Janet's motives were good and generous, my reaction was anything but that. At the time this occurred we were in the midst of a total loss of control over Lee and I deeply, if unjustifiably, resented this intrusion into a private "family" matter.

I think Larry was deeply shocked by Lee's condition, but Janet, to her credit, handled it well and Lee enjoyed the visit very much. He had lost none of his skills as a con artist and had managed to separate Larry from $10 before he hardly said “Hello”. While they visited with Lee, Patti checked on his supplies and found he had 11 packs of cigarettes on hand, lots of food, and a cheque for $89 on his dresser to be cashed the next day. We later found out this was enough for several bottles of rum, and he did some serious drinking over the next two or three days..

The following Friday, he started calling in mid afternoon stating that he was coming out and he was going to get the CPP money I was holding for him. He was told “No.”. He kept calling during the evening and each time he was given the same answer “Don’t come out. You are not getting any money. We will see you tomorrow.” We finally disconnected the phone and went to bed about 10:00 o’clock. At 1:15 AM we were awakened by a thunderous pounding on our front door, followed by a pounding on our bedroom window. I opened the door and Lee with his ugly bloody face pushed into the room.

“What the hell are you doing here!”, I asked.

“ I came to get some money, and I’ve got to have a cigarette.”, he replied.

“Well, you can just get the hell out of here and go home!!’, I ordered.

“Sorry, but the last Skytrain just left.” , he answered with a smirk. I could almost read his mind, " Gotcha you old fart! Whatcha going to do now?"

“That’s too bad,” I said. I dressed, packed his ass into the car, drove him down to the Walton, dumped him out at the door, and went home to bed. End of Problem!!

The next morning, Patti & I went to see Lee and picked up a carton of cigs on the way. His fridge had lots of food, but he was broke. Well, that’s tough but you are going to have to learn to manage your money, my boy. What happened to the $90 you had this week on Tuesday, and on, and on... It was like we were talking to a wall. There was no feedback, and we didn’t know whether we were reaching him or not. We calmly and forcefully laid down the law.

"We are not home except between 6-7 PM. Call then and talk to Dad or forget what you want to do. You are not coming out whenever you feel like it, and you had better get used to it."

We spent two hours stressing the point to him, and then left but nothing had registered. That afternoon he again was on the phone, leaving messages, can he come for a visit.

The calls continued all day Sunday. He is bored. He is lonely. I am very sorry Lee but we have a life to live too, and this weekend you are not included in our plans. About 10 PM I made the mistake of answering the phone to be told, “Hi, Tell Mom I’ll be out about 7 in the morning to spend the day.” Hang up.

Monday morning I got up as usual at 6:30, got a coffee and sat down in my chair to watch the morning news. At 6:45 here comes Lee, lurching across the lawn. I opened the door and he pushed in and demanded a coffee. He wasn’t satisfied with the fresh pot I had just made, and proceeded to throw the pot out and started to make a fresh pot with a total overload of coffee as a starter. I forcefully placed myself in his way, took the coffee pot away from him and told him,

" Lee, get the hell out and go home. You were told to wait for an invitation and you don’t have one. You do not live here any more. This is my place and I don’t take orders from you, son, and I’m telling you to leave."

Well, he’s not going to go so I told him I would call the Police. “Yeah, sure” snicker, snicker. So I called and after about a 30 minute wait, the Police arrived, called Lee out of the house and told him to leave which was all they could do. He lurched off down the street, hung a right into the car lot next door and disappeared from view in the general direction of the Skytrain. The Police then left but I felt that had been just too damned easy. It didn’t fit Lee’s mode of operation at all to give up without a lot more pressure. Nevertheless I reassured Patti, told her to keep the doors locked, and if Lee returned, simply call the Police again.

I was now late for work, but as I started to back out of our driveway, here came Lee out of the car lot and around the corner. I stopped the car, got out and simply stood beside it, looking at him like the wrath of God, staring at him, and pointing back towards the Skytrain. Lee stopped halfway across the neighbors lawn when he saw me, and I simply stared him down. He stood there for several minutes thinking things over, then simply turned and again disappeared around the corner. I still didn’t believe he had left. Knowing Lee, the game was just beginning. I went back in the house, got another cup of coffee then just sat in my car and waited to see what developed.

As I waited, every once in a while I could see him peeping around the corner of the fence, looking to see if I was still there. After a span of 10-15 minutes with no sighting I thought perhaps he’s gone, but I’ll just do a test to make sure. So I started the car, backed out of the driveway, drove down to the corner of the street, pulled a U-turn out of his line of sight and drove back to our house just in time to catch him going into our driveway. I finally intercepted him as he was going in the back door of the house which Patti had not yet locked. He wanted s to see Mom to get some money. I told him there was no way he was staying, he was leaving with me right now, and I used just enough force to make him let go of the chair he was hanging on to, escorted him to the car, made him get in, drove him to the Skytrain, put him on it, then stood on the platform until the train left the station, and waved goodbye to him as it pulled out. He apparently got the idea this time for he did not return.

On March 19 Lee was put on asetetrin for his psoriasis and by the time we visited him the next Saturday there was already an improvement, at least on his face. He was still steadfastly refusing to bathe but he was still hanging on. After Patti cleaned up a bottle of shampoo the he had spilled over his duffel bag in the middle of the floor we left him stocked up with cigarettes, ice cream and potato chips, The last we saw of him he was comfortably mounted cross legged on his bed, a gallon bucket of ice cream on his lap, surrounded by a cloud of cigarette smoke, lost in the cooking show on his color TV. He was not depressed but rather seemed to be almost frantic in his energy level. It was as if the Ritalin he was taking was suddenly acting like an amphetamine, or the way it was supposed to work with "normal" people. He claimed to have rediscovered his artistic desires and he had decorated the walls of his hotel room with his pastel crayons and the extremely large penis he had drawn above the head of his bed was most colorful and striking, even though we anticipated a controversial reaction from others who might discover his latest work.

For some time we and the ACT team had been noticing that both Lees breathing and mental functions seemed to be deteriorating. On Monday, March 25 after a visit to see Lee the ACT team decided that Lee was finally ready to be moved to the May Gutteridge Hospice. Lee had been high in priority on their Wait List for some time and Patti had been down to see the Hospice and she was very impressed. It was run by the St. James Society, it was clean, quiet, comfortable, caring. It was staffed by people who actually care for their wards as if they were real people of worth and dignity and not simply worthless throw aways. We had intentionally requested that Lee not be shown the Hospice until they felt it was time that he go there. Finally someone listened to us on how to handle Lee. The ACT people took him to see it and he liked it. There was an opening and he was moved. No wait. No frustration. No impatient fretting and endless questions about how soon can I get in there. There was an opening, he likes the place, OK Lee. Let’s get you moved. Objective accomplished.