The Long and Winding Road
It was like moving the hospital to my house. There was so much equipment. There was an electric hospital bed, oxygen machine, wheelchair, IV poles, safety rails, and pretty much everything in the hospital room. I had the young man set it up in Jeff's bedroom so he could be in a quiet location.
Next, the hospice people showed up to set up his care plan. This was unnerving for me, I guess, because it was the reality of accepting the end of his life smacking me in the face. Part of the meeting was to brief me on what to expect regarding the deterioration of Jeff's health, the type of care he would get, and scheduling. The medication was brought along, and they instructed me on the technicalities of each one. I was terrified of being the one having control over giving him additional pain meds in addition to the constant morphine drip he would be getting. I had been given dangerous pain meds for him, things that could kill him. I was scared to death of overdosing him, and after he died, I wondered if I had caused him unnecessary pain by being conservative with dispensing it.
My state of mind was confused; facing the reality of impending death was too much for my brain to absorb. I didn't even consider that Jeff would be brought home on a stretcher in an ambulance. When the ambulance pulled in the driveway and saw Jeff's frail little body being carried in, I lost it. There was no ignoring the truth now, he was critically ill, and nobody or nothing was going to change the end result. There was no hope for him; no amount of tears or prayers was going to change that.
Jeff was out of it when they brought him in. He never woke up. The nurse came back to check on him for the night and told me he would probably sleep all night and that she would be back in the morning.
I had been living with severe sleep deprivation for over two months, and now those were going to be "the good old days." I was so afraid that Jeff would try and get out of bed and fall, or pull out his port or just stop breathing that I wasn't even going to bed. I slept on the sofa when I could no longer keep my eyes open, but it was short periods of fitful sleep. Any little noise I heard woke me up, and I was constantly checking on Jeff. After two days, he finally woke up and wanted his bed moved to the living room. Kevin and I moved all of his equipment and transferred him to the center of the house. After a week, I figured out that he was afraid to be alone.
Jeff made so many noises when he slept, he was in pain a lot, and the nurse had to increase his morphine drip every day. Every time he made a noise or changed position, I would instantly wake up. My biggest fear was that he would not wake up and that I would be the one to discover it.
The next change in behavior was a little improvement physically, but he was beginning to say and act out crazy things. He would be lying in bed and acted like he was at work, answering an imaginary phone and typing on an imaginary keyboard. He would talk on the non-existent telephone to customers. He was in that state regularly now, and it was unraveling my nerves. He didn't even know where he was anymore. He was totally removed from reality, which was probably a blessing of kindness to him. But it was tearing me apart. I called my son Glen crying and told him I didn't think I could cope with it anymore. It was affecting my mental state. I felt like I was losing it; I was shaking outwardly but also inside. I don't know how to explain it, but I knew I was on the verge of a breakdown of some sort. He was going to fly in from DC and help me for a few days. He couldn't take off for an extended period because of their workload, and he had to save some days to come back when Jeff died.
Glen was my lifesaver. I was able to sleep a little, and just being able to talk to him in a real-life situation and not confusion helped me immensely. One of Jeff's eyes had started drooping like a person with a stroke might get. He had a brain MRI the day he came home, and I asked the nurse to find out if it showed that cancer had spread to his mind. I suspected that was the cause of his erratic behavior and eye droop. It was true; cancer had spread to his brain and all over his body. He was going to become physically and mentally deficient in a short period of time. Glen had helped me immensely both spiritually and mentally. It gave me a brief break from reality.
Kevin, my youngest son, was ten years younger than Glen and nine years younger than Jeff. Within the previous 2 years, he had lost his grandmother, great grandmother, grandfather, and aunt on his father's side of the family. He was already beaten up with grief and was having a difficult time watching Jeff's illness progress. But he was terrific at helping him get up and down and keeping him propped up in bed when he would somehow slide down the mattress. I felt terrible for him having to deal with his brother dying. It didn't seem fair.
Jeff had decided he wanted to die, that he couldn't take it anymore. He was begging me to help him kill himself. Begging and crying. Of course, I told him I couldn't do that. He said he couldn't stand the pain anymore. I called the nurse, and she showed up with a chaplain. They increased his medication and tried to comfort him for hours. He finally fell asleep. At some point, I fell asleep on the sofa.
I woke up, and Jeff was sitting in the wheelchair next to me with a butcher knife in his hand. He said, "Either you are going to kill me, or I am going to have to kill you." I wasn't afraid of him hurting me, but I was fearful of him stabbing himself. I took the knife away from him and called the nurse, she was there very quickly. We got him back to bed, and she gave him some medication to calm him down. She told me he was in the last stages and that most people in his condition would have already died. He was fighting it either intentionally or unintentionally. She said they had never seen anyone in his condition hang on so long. It was a miracle and a curse. At most, he would probably survive one more week. His heart rate was so high that it was just a matter of time before it gave out.
After the nurse left, I felt like somebody had cut my heart out. Even though I knew the end was coming, hearing it from a professional was brutal. I didn't know how to prepare myself for the end, but it was something that I always thought about. I felt like the Grim Reaper was standing beside me, and my whole world was starting to fall in on me. I felt nothing but despair on the inside and somehow had to figure out how to not let Jeff see that.
I just didn't know if I could do it; I didn't think that I had the strength to get through the things I would have to face.
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