All Through The Night

Always open.

The two months that I worked before Jeff finally was placed in hospice care were hell. My mind was with my child; my body was at work.  I would leave work and go to the hospital.  The earliest I ever left was 12:30 am.  I had to be up at 5:15 to get ready for work.   The sicker Jeff got, the longer I stayed.  There were crisis nights when I only had an hour's sleep. It took a toll on me; the stress and lack of sleep were my two constant companions.

After Jeff's surgery and recovery time of 9 days, he was released.  He was pretty much back to his usual self for about five days and then began to feel ill again.  He was in pain, and it was increasing every day.  His last meal was on July 5, the day after coming home from the hospital.  He tried to eat, but it was making him sick and hurting his stomach.  He stopped eating altogether.  On the day he died, he weighed about 75 pounds; at the beginning of his illness, he weighed 220.  He drank coke or Slurpees; the protein drinks made him throw up.  He was beginning to sleep almost constantly.

Ten days after he had been released from the hospital, he was in agony.  I had picked him up the strongest prescription pain killer legally allowed, and it had no effect on him.  That night he was crying from the pain and asked me to take him back to the hospital.

We went into the emergency room, and he was in such agony that they put him in a room immediately. An older doctor gave him pain meds through his port, and he fell asleep.  I went back to the waiting area and sat for several hours with every coughing, puking, crying person in Memphis. 

Finally, after about 2 hours, the doctor came out and said he was ready to discharge him.  He picked the wrong person on the wrong night to talk down to.  "Discharge him?  Are you out of your mind?  Did you look at his records?  Do you understand that he has terminal cancer?" He just gave me a blank look.  I told him that he would not send Jeff home because his pain could no longer be managed with a pill.  "Admit him, now."  And so he did.

I stayed at the hospital until 4:30 AM, went home, took the dog out, and got dressed for work.  No sleep.  On the way to work, I lit a cigarette and noticed my hands were shaking quite noticeably.  That was going to be my new norm for months after Jeff died.  I was very self-conscious about it and tried to hide it as much as I could.

The pain medication, which was morphine, plus other pain meds, managed his pain, for now anyway.  He was very often so drugged that he didn't know where he was.  He would say crazy things, outlandish things. My son Kevin and I would mostly agree with him because he was vulnerable to any kind of emotion or confrontation.  One morning I got a call at work to come to the hospital immediately.  I almost fainted; I thought the worst.  Then they apologized and told me he had pulled out his port and IV's and was trying to leave.  He was out of control, and 8 people were unable to restrain him.  They needed permission to put him in restraints to protect him.  Of course, I gave them the okay, walked past my bosses' office, and told her that I had an emergency, and left.

When I walked into Jeff's room, my heart broke.  He was strapped to the bed, fighting and crying.  A room full of nurses, aides, and security people were leaning over him, trying to make him lie still. There was blood everywhere from the hole where his port had been. It looked like a knifing scene.  He was still bleeding, and they were trying to stop it.  He saw me and was crying like a little boy, "Mom, tell them to leave me alone."  I don't know where my strength came from during those hard days.  Inside I was in pieces, shattered.  I kept telling myself that I couldn't stand this pain, but I did.  I told Jeff where he was and that he was sick and bleeding and had to lie still.  I promised him that I would have them remove the restraints if he stayed in bed.  He agreed, and they agreed.  They got the bleeding stopped, sedated him, and replaced the port.  The blood was almost my breaking point.  Usually, it doesn't bother me, but it made me faint, light-headed over the years when it was one of my kids.

I sat in the room while Jeff slept.  The phone rang, it was my mom.  She didn't ask how Jeff was doing. She wanted me to stop on my way home to get her lottery tickets.  I told her no, it would be well after midnight.  She asked to get them the next day.  She had been doing this to me twice a week.  I told her no every time.  I had explained over and over what my schedule was like, and side trips for bullshit were not in my schedule.  She just kept hounding me about it.  I put my foot down this time.  I was still having to grocery shop for them in my spare time and run errands, and I just wasn't going to do it.  She never called Jeff to talk to him or never called me to ask about him.  She was as cold as a fish.  I stopped answering and returning phone calls and messages.  Jeff had also asked for her to come to see him, and she would not do it.  It hurt his feelings so much, he just couldn't understand her, nor could I.  It drove a permanent wedge between us.  I never forgave her for the pain she caused him—ditto for my brother.

I was trying to shield Jeff from as much pain as I could emotionally and physically.  Unfortunately, several people caused him anguish during his last weeks, and I will never forgive them for it.  I have a lot of guilt because I don't think I was successful.

All I wanted for Jeff was for him to be pain-free and know that he was loved.  People who were not around him didn't realize the emotional turmoil and intense physical suffering he was subjected to.

And it was going to get worse.