Monday, October 31, 2005

Growing Pains: Part 3

Growing Pains Part 1
Growing Pains Part 2

It was several months before my father could bring my brother home from Italy. He was in Florence with my brother and working with an army of doctors in order to get him the treatment that he needed to be well enough to travel. I heard through my mother that the doctors in Florence were extremely cooperative and he was probably getting better care there than he would have if he was in the states. My father's mission was completed and he got Doug well enough to travel home for the holidays.

I eagerly awaited my brother's return and it consumed my thoughts. I was very happy that he was going to be home with us for the holidays and I was eager to ask him all about his travels since he left. My mother prepared the house for his arrival. His room had become a sort of make shift hospice, an indication that screamed that although he was well enough to travel he wasn't going to be the man that I saw at the airport when he left for Europe the summer before. My father also had communicated to my mother that he wanted the house to be decorated for the holidays for my brother's return. My parents were determined to not let HIV ruin our holiday.

The day arrived that they were coming home. My mother received a call that they had arrived but there had a bit of an accident. I learned from my mother that the skycap that was supposed to be watching my brother in his wheelchair had neglected to lock his wheels. If you have ever been to the airport in Phoenix you know that there are large ramps that lead to the gating areas. My brother's wheelchair had rolled down a ramp and he had fallen out. My father was livid and engaged in some kind of litigation, my mother and I were worried about Doug. My father said he was fine, a few bruises but nothing major. The biggest problem was getting my brother to stop spewing profanity and racial slurs at the skycap.

Finally my father delivered my brother home. I guess I hadn't really prepared myself for the condition that he was going to be in. I expected him to be ill but not this ill. My father rolled my brother in on a wheelchair. The weather was actually cold that winter in Phoenix and he was bundled in a blue wool parka with wooden catches. He was thin, horribly thin, and his once supple cheeks had deflated and his hair was thin. I couldn't tell if the fatigue in his gaze was from the trip or if this was going to be his normal state, he glanced at me for a moment and managed to crack a smile and mumble, "Hi Adam." I almost lost it when I saw him. I couldn't believe what I was seeing. My father wheeled him further into the house and Douglas suddenly started howling in horror. I didn't know what to do but my father remained calm as did my mother. Somehow the managed to soothe him. I would later learn that the HIV had gotten into his brain and he had severe dementia and he would come in and out of consciousness. His screams of horror were because he had visions of doctors surrounding him around a bed while they tried to suffocate him with pillows. I was naive to expect this homecoming to be any better than this and looking back I think the effort of my parents to make this a normal-as-possible christmas were for my benefit more than for the benefit of my brother.

The days leading up to christmas were dreamlike. My other brother Paul had come in from the holidays from New York. This was a novelty as he is a provincial New Yorker and insisted that my parents house in Scottsdale was designed by Mike Brady. My other brother had moved from upstate New York to Scottsdale with his wife in the summer and my sister came from New York as well, all together for what was most likely our last christmas with the whole family. It was the first time since moving to Arizona that my entire family was together for a christmas, I always thought it unfortunate that we have never been able to get together like this again. My parents had overnight become professional nurses. Every morning my mother and father would care for my brother; cleaning him, soothing him, and give him his meds injectables and all. They were relentless in his care, constantly monitoring his every need to make sure that he was comfortable. This is pretty much the only memory I have of my parents from this time in my life. Their devotion was completely focused on the care of my brother. I was still in shock at the state of my brother and I kept myself at a certain distance.

Christmas day arrived and Doug had actually some improvement. His fits of demetia were less frequent and I think the holiday was really making him feel better. We went to church in the morning all together and we returned home to open gifts. My brother and I were sitting next to each other close to the fireplace and he had a bag at his feet from Florence. Everyone else was busying parsing up gifts from under the tree and my mother started to go into the bag at my brothers feet. Doug slapped my mothers hand and proclaimed in one his moments of lucidity, "I'm not that far gone yet." He started pulling out small boxes. Each one of them stamped with addresses on the Ponte Vecchio. None of them were annotated as to who the recipient was to be but he knew the destination of each one with out any problem. Last came mine, he handed it to me and smiled and said, "Like I promised you." I opened the box and inside was a solid 14K gold cross in the Franciscan style on a gold chain. I had asked him before he left in the summer to buy me a gold cross and he promised that he would get it for me. In all his health problems and fits of dementia he remembered he brought for his family from Italy and he remembered a promise he made to me. I held back my tears and for the first time since he came home I gave my brother and hug and a kiss.

One day my parents had to go out and do something I don't know what. They wouldn't be gone for long and they asked me to watch Doug. He had had all of his medications for the day and he and I sat in the family room watching TV. I was sitting near him and he was half paying attention to what was on the screen. Although I had seen my parents do it many times, I was hoping that I wasn't going to have to calm him from a fit of dementia. Doug grabbed his walker and said, "I want to shower." My brother in health and in sickness wanted what he wanted when he wanted it. I tried to convince him to wait for mom and dad to come home before he took a shower but he didn't want to wait. Usually my parents would have Doug shower in their large walk in double headed shower in the master bathroom and so my brother headed that direction shedding clothing along the way. I knew at this point there was no stopping him. I turned the shower on and adjusted the temperature. Doug was shivering and eagerly awaiting his shower. At this point I thought to myself, "How is he going to do this alone? He can barely stand on his own without his walker." I took off my clothes and had him lean on me while I moved his walker into the shower. I then had him grab my forearms with his hands and I acted as his walker until we got into the shower. I didn't have to coerce or verbally lead him in any way, he understood every move I was making and followed my lead. The water started to mat his thinning hair and roll down his thin frail body and he smiled and moaned in delight, "Thats better." I was happy to see that he was enjoying the water. I took some liquid soap in my hand and rubbed it on his back and began washing his body. I was relieved that I was finally able to do something to ease his suffering. At one point in the shower he began to cry and I was worried that he was hurt or was in some discomfort. I was also worried that if he tried to respond he might not be lucid. He turned and looked at me and said, "I'm sorry that I went and got this way. I want to die soon so that you don't have to do this anymore." I rubbed his back slowly and said to him, "Stop talking like that. I thought we were having a nice shower." He slowly stopped sobbing and smiled a bit. We got out of the shower and I dried him off and got him into some comfortable pajamas. When my parents came home I was brushing Doug's damp hair with a soft brush and watching TV. That was a good day.

The situation deteriorated from that point on. It was now January and a very cold and rainy winter in Phoenix. One night I was woke up by the sound of my brother moving from his bedroom into our bathroom. I thought to myself that I should have gotten up to help him but I slipped back into a deep sleep. I was later woken up by the sound of a body falling to the ground followed by howling. I couldn't move. I lay in my bed paralyzed with fear about what I would see if I got up. My parents heard the howling and I heard them wake up screaming my brother's name from across the house. They ran towards h is room and I distinctly remember my mother screaming through tears, "Not yet." My father reached Doug's room his voice trembling and crying. He turned on the lights and from what I heard he saw my brother on the floor where he had fallen. Somehow the sight of my father calmed my brother quickly and he stopped sobbing and my father asked gently, "What happened?" Doug replied with a tinge of accomplishment, "I went to the bathroom by myself." My father told him that was good but next time he should call for him or me next time he wants to do that. My mother was in the hall hysterical and my father assured her he wasn't hurt and that Doug was more scared than anything. I cried myself to sleep after that. I was disappointed with myself that I didn't get up to help my brother when he had fallen, humiliated that I had let my fear of seeing him dead on the floor prevent me from helping him regardless of his cries.

Doug's dementia was getting worse and his health was failing. The last time I saw him it was the morning that he was being moved to the hospital. I was dressed for school and my mother said to me, "Say goodbye to your brother before you leave for school." I realize now that she was really telling me to say goodbye to my brother. I went into his room and there was propped up on his bed while a nurse was doing something at the foot of his bed. He was in a daze and looked exhausted. His eyes indicated that he recognized me and I hugged him and kissed him on the forehead for what would be the last time.

Some weeks passed. My parents were rarely at home, they spent most of their time at the hospital with my brother. When they were home they were constantly on the phone with relatives calling frequently asking about my brother's condition. One such night my dad was on the phone with his sister, my aunt. He was in another room and I heard him cry like I had never heard a person cry ever before in my life. Even to this day when I remember that moment the sound of his cry is so unlike anything I have ever heard. It was then that I realized how much he loved all of us and how much it hurt him to see one of us in so much pain and suffering. Whenever I hear news that a parent has lost a child I think of how my dad cried that night. For me it was difficult to lose my brother but it is inevitable that brothers and sisters might see their siblings die, especially for me being the youngest. No parent should have to endure the torment it is to see one of their children suffer and die before them.

February 2, 1994 I woke up and was shocked to see my sister-in-law in my house at 7am. After I almost soiled myself after seeing her in the hall she explained to me that she had been working (she is a nurse and then was working the night shift) and my parents told her to come to the house after she got off work to check on me. She told me that my parents were at the hospital all night. The day at school seemed a blur. I was quiet and everyone was asking me if I was ok. I didn't know what to say. All of the events of the past two years were weighing too heavy on me. The rejection, my weight, HIV, my brother, my own sexuality. I walked home from me bus stop. I remember as I got close to my house I stared at the vaulted teracotta tile roof. Somehow I knew that my brother had died and for a moment I thought about not going home. For a split second I thought if I didn't go into the house I wouldn't have to hear that he died. I took a deep breath and walked further towards my house, heart pounding I opened the side door. I walked into the house and my entire family was standing in the family room sobbing. My mother came towards me, face covered in tears, grabbed me tight and cried in my ear "Adam....he's gone."

My brother died of respiratory arrest due to complications from AIDS on February 2, 1994. His birthday was October 31st, 1962. He was 32.

I love you Douglas.

(Epilogue to Follow)


Blogger tornwordo said...

I'm getting all choked up first thing in the morning. You've written a really nice tribute to your brother and family.

5:38 AM  
Blogger The Wisdom of Wislon said...

Don't know what to say apart from like tornwordo you've written a a tribute from the heart.

Take cCare

wow xx

6:07 AM  
Blogger Spider said...

I have never read anything any more beautiful... it is so hard to type when your eyes are full of tears...

6:47 AM  
Blogger Brian said...

This is a powerful tribute. You're passion and courage in telling this story give true honor to your brother, your family, you, and everyone who has ever been in a similar situation.

11:59 AM  
Blogger Jim said...

Thank you for sharing your family story Adam. I can't imagine how difficult it must have been for you especially, trying to comprehend the meaning of what was happening around you at such a young age.
Just as i'm sure that your cross is among your most cherished possessions, i'm also sure that your brother cherished your care and compassion during his most difficult times. I hope too that this incredible tribute has been cathartic for you. Very touching.

3:14 PM  
Blogger Jim said...

Adam, wow. Impressive bravery both then and now. So much to processs for someone at a critical juncture in life, yet you seem to have done just that, and how.

Your brother would have been very proud!

I'm armed with Kleenex now, bring on the epilogue :)

3:49 PM  
Blogger . said...


5:12 PM  

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