It has been a year today.
I am still shocked over the death itself. I still worry and pray that the nurses were correct and Raymond did not suffer. I pray that if he did he has forgiven me because I had promised him it would be easy.
When the chemo damaged Raymond’s kidneys, the doctors told me that he would probably die of kidney failure long before he died of cancer. (Wrong again medical profession, Raymond fooled you all.) I distinctly remember our wonderful PA taking me aside and telling me that death by kidney failure would be merciful. She said that most likely Raymond would die in his sleep. This was told to me over and over again.
Raymond and I came home and we had a dialysis shunt put in his arm preparing to start dialysis as soon as there was any hint that his kidneys were getting worse. The doctors explained that we did not want to have to put the shunt in during a crisis. We had a long talk with our wonderful nephrologist, Dr.Wall. He talked to us about what kind of diet Raymond should follow and we went home knowing that Raymond would have to be closely monitored. We did everything Dr. Wall told us to do, and Raymond’s kidneys remained insufficient, but stable. He never needed dialysis, and it became pretty clear that kidney failure would not be the cause of death. .
That would cause us to wonder at times what his death would be like. We did not want it to be painful, or frightening. While in hospice, Raymond and I would question the nurses constantly about what his death would be like. The hospice kept assuring us that he would not suffer, they would not allow it, and there would be plenty of medication available to keep him comfortable. I spent hours on the internet trying to figure out how I would know when death was near.
By the last day of school 2006, Raymond had already defied all predictions made by the doctors and nurses. He did not die on March 21, he did not die within 4 days of March 21, and he certainly lasted longer than 10 days after March 21, 2006. He was still able to participate in family discussions. He colored Easter eggs in his hospital bed. He watched television with us, played chess with the boys, helped identify a snake our youngest had found on the breezeway, and in general showed no signs of dying, and yet, he was. I was concerned about the boys. I worried that they had forgotten that Raymond was dying. His medications and care had become such a routine that I was afraid they might start thinking that routine was our life and their father was, if not getting better, at least stable. So when they came home from their last day at school, I asked Raymond to talk to the boys, and he did, telling them that he was not getting better, he was dying, we just did not know when, but it probably would be a lot sooner than later..
Raymond had stopped eating a couple of weeks before this discussion. He was still drinking, but he had stopped asking for solid food, and when I made him food he would just take a miniscule bite and ask me to take it away. The hospice nurse told us this was a sign.
Raymond also had pretty much stopped talking. He spoke when spoken to, but mostly he just listened. He did not start any conversations. I was told this was also a sign.
On Sunday, May 28, 2006, Raymond was too weak to finish his bath. He asked me to stop and just let him lay down. That was a sign. Raymond was fastidious about cleanliness. The rest of the day Raymond slept on and off and did not really engage in conversation with us. I sat by his side and held his hand.
Monday, May 29, 2006. Raymond was quiet, watchful. I spent the day holding his hand, while sitting right next to him so he could see me.
Tuesday, May 30, 2006. The boys were playing in a back room. I was sitting with Raymond. An odd smell hit my nose. Smoke? Maybe? I called the boys in. Hot wires? We unplugged everything in the kitchen, and the boys went back to playing. I went back to Raymond. I looked up to look out the kitchen window and noticed the kitchen looked odd. I called the boys in. Did the kitchen look smoky? We opened all the windows. I gave the boys my purse, Raymond’s billfold and medications, and they got their favorite stuffed animals. I sent them outside and called 911. We got a great response time from our volunteer fire department! I sat next to Raymond holding his hand, trying to figure out if I should evacuate him, and how would I do that. The firefighters find the source. The water heater has shorted out and is burned up. The response team was wonderful, and since I know many of them personally I did not have to do a lot of explaining about Raymond. One came to me and wanted to know if they should check out Raymond. I thanked him and said “no.” I did not know if Raymond was sleeping or just semi-conscious. I just did not know. I finally remembered that I had 12 oxygen canisters on the floor behind Raymond that could have caused a disaster.
The nurse came for her visit. She gave me the name of the plumber they used for their new water heater. I called the plumber out, and their estimate seemed really high. I did not know what to do. I sent them away. I felt as if Raymond was testing me. I called other plumbers, they either cannot get to me or I don’t like how they talk to me. I called friends for referrals. No real luck.
Wednesday, May 31, 2006. There is a definite change in Raymond. I can tell he is slipping. I tell the boys they need to play in the living room where their dad can hear them laughing and having fun. I think he needs to know they are okay. I called the expensive plumber back. “Put it in” I said. I wonder if I am passing the test. If I fail the test and refuse to get a new water heater will Raymond stick around until I solve the problem? The plumber came and I told him it is quite possible my husband will die while he is working. He says he is okay with that as he sat with his grandfather while he died. I showed him a way to get to the laundry room without coming into the living room as I did not what Raymond disturbed. During all of this, I was sitting next to Raymond and holding his hand except for when dealing with the plumber. The new hot water heater is installed. I think I passed the test. I tell Raymond. Raymond is restless, is it pain? I call the nurse, but have to leave a message. Raymond is moaning, yawning, and sneezing, and it is loud. The hospice aide shows up to give Raymond a bath. It is obvious that he is not up to a bath. She moistened his mouth, wiped his head with a cool cloth. She tried to make him comfortable. The moaning is getting louder. We are worried he was in pain. The aide called the nurse, and more morphine was ordered, and delivered. I called the nurse, please come hook up the new morphine. She assured me she did not think Raymond was in pain. The yawning and moaning is getting louder. She did an assessment. She said it was just a matter of hours. Told me to call and let the Willed Body program know they would be receiving a body that night. She told me to call her when it was over, or if we needed her. The boys were there, playing. I gathered them to their father. I told them it won’t be long. They went back to playing. Raymond looked at me, and mouthed “I love you.” Did he really? Was it wishful thinking? I know it happened, but maybe not. I begged him to try to let me know if he was really in pain. I promised no pain. Why was it so loud????
I could tell he was fading. Our youngest had always wanted to be there when it happened. Oldest did not. I called our pastor. I called our friend and asked him to come and get the oldest. They arrived. Oldest wanted to go out and walk; when he came back he decided to stay. I told the pastor and friend that they could leave it if bothered them. Everyone stays. It is loud. Moaning, yawning, and sneezing? What happened to going quietly in his sleep? What was all the noise about? Pain? Oh, please I prayed, not pain. His heart started beating so fast that I thought it must be exploding.
Sounds are fewer and farther between. We gathered around and prayed. We opened our eyes. “Is it over?” I ask. Yes, our friend and Pastor determine it is. My youngest is glad he died during the prayer. Approximately, 8:45 p.m.
Our Pastor said “I’ve never seen a more peaceful death.” That comment startled me. Peaceful? All that noise. What in the heck has he seen in the past? I have seen death before, it was quiet.
That was it? He was gone. The love of my life was gone. He will never laugh with me again. We will never debate again. No chance to cure him. I knew it was coming, but damn it hurts. I guess I passed the test. He waited to make sure I was able to handle a small crisis. He waited until the boys were out of school and would have time to recover before the oldest went away to school and before the youngest hit middle school.
I called the nurse. I called his parents and one friend. I asked that no one share the information until I had time to tell my mother in person the next morning.
The nurse came at 9:45 and pronounced him dead. She called the mortuary. She removed the medical paraphernalia. Who knew there was so much stuff to do? All the medications had to be destroyed. I had to sign forms to say I witnessed bottles of morphine being poured out, and duragesic patches cut up.
The boys continued to play games at their table. Pastor, friend and I looked through photo albums and told stories at the end of his bed. The nurse sat and filled out her paperwork.
The mortuary did not show up until midnight. They were lost. They asked to be alone with the body. We went into the next room and waited. They came out and asked us if we would like to be with the body again. The boys and I looked at each other. “No, we’re done” we said. They brought him out on a gurney with a dark purple crushed velvet looking blanket on him. His head is uncovered. I am shocked. I did not expect to see his face again. What if the neighbors see him dead? I didn’t say anything. I can tell that the men from the mortuary are pleased with how they arranged the body. I did not want people to see him dead. I did not say anything because I did not want to upset the boys.
We made plans for the next morning. Our friend would come and get us so we could notify my mother.
Then it was just the boys and me. We went to bed. The youngest and I slept in the living room with all the equipment in the bed we had been sleeping in for weeks. I thought sleep would not come, but it did for a few hours. I woke up. Why did we sleep in the room with all the equipment? There were other beds. It was so quiet without all the machines running.
Months later I asked our Pastor what he meant by his “peaceful death” comment. He said he was talking about the moment Raymond died, not the time leading up to the death. I told him that I had not been able to stop thinking about that comment. He apologized that I had been upset. I told him it wasn’t his fault; I just had not expected a loud death.
I think about the sounds coming from Raymond that night. Sometimes and I tell myself it was just Raymond not wanting to leave us. Yes, he was tired of being ill and suffering, but he never wanted to leave us. I tell myself that so I won’t go crazy thinking he was in pain. I promised no pain. When doubt comes to me I beg Raymond to forgive me if he was in pain. I hope I did all I could.
It has been a year. I feel as if I have accomplished nothing this year. My dear friend, my rock, says she is proud of how much I have accomplished this year and how strong I have been. I wish I felt that way.
Most days I feel that Raymond is disappointed in me. I am not living up to his expectations. Raymond talked to me about what my future held. He had hopes and dreams for me and the boys. He never stopped to think that without him I have no one to encourage me to meet those expectations.
Raymond told me he did not want me to mourn long; he wanted me to move on. He probably never stopped to think about how much I have to mourn. I not only mourn for Raymond, I mourn for all my lost dreams of our life together, both past and future.
Tomorrow is the first day of the second year of this different life.
