“Do not go gentle into that good night…Rage, rage against the dying of the light.” –Dylan Thomas
In mid-October, the steroids stopped helping Jack’s clarity, so it was time to wean him off them. I knew this was the beginning of the end, and I had to fight the urge to keep giving them to him just to keep his body around. I soaked him in during those few days. His smell. His hugs. He had been so weak when he went on hospice, but by then he was as strong as a tree. A big, beautiful, bad-ass, psychotic tree.
We had a routine those days. I’d give him pills at 6 a.m. These consisted of 2 milligrams haloperidol, 1000 milligrams acetaminophen, 300 milligrams gabapentin, and 25 milligrams methadone. He’d go back to sleep then for a few hours, and I’d get some school work done at my desk.
The morning of October 27 was different. I settled down at my desk at 6:15, coffee in hand, and heard him stirring. I went around the corner to the living room at the same time he rounded the corner from the bedroom. He was fully dressed, from his favorite army-green knit hat to his Carhartt pants to his white Nikes. These were his “going out” clothes. He looked at me with desperation.
“We’ve got to get out of here now!” he said. “We don’t want to go to prison. We have to get out of Mexico NOW. The Mexican police are no one to fuck with.”
In the preceding weeks, I’d traveled the learning curve of dealing with a psychotic person. There is no point in arguing. (Believe me, I tried.) It is all about joining and negotiating with the person.
“It’s still dark,” I said, reaching for the .5 milligram bottle of haloperidol I used “as needed”. “Can we wait until it’s light? Meanwhile, take these.” I slipped in a milligram of lorazepam for good measure.
He downed the pills and nodded, pacing. He was now up to three milligrams haloperidol, and the hospice nurse had said five milligrams would sedate an elephant. I was sure he’d be out by sunrise.
Thirty minutes later he was even more agitated. “Can’t you trust me that we are safe here?” I asked gently, hugging my strong tree. He patted my back and then turned to me in disbelief.
“Can’t YOU trust ME that we need to get out of here? Do you WANT to go to a Mexican prison?” His eyes were wide. Although I didn’t know it at the time, it would be the last time we lost ourselves in each other’s eyes. I felt him in every cell.
I had no answer for him. By then I was neurotically playing solitaire on my iPad, my go-to coping device. “I’ve got some things to finish up here for work, and then we can go,” I said. I dialed the Hospice Hotline: 2XX-XX37. I think I will always know that number by heart.
“Okay,” Sherry said, “Give him another milligram of haloperidol and another milligram lorazepam and I’ll call the doctor.”
He sat down and went for his vape. “Good idea,” I said. “Some medicinal will help your anxiety.”
“I don’t want to smoke this shit!” he said, shoving the Mason jar aside.
Oh no, I thought. He’s gone. He’s really gone.
“I want to go home, I want to go home,” he kept repeating, going into a ten-second loop. “I don’t want to stay here in prison.”
Then a lucid moment. He looked right at me from across the room. “I don’t like the way my brain is working. I don’t like it one bit!”
“I am so sorry,” I said to him, my heart breaking and rebreaking in a single moment. I swallowed my tears.
The phone rang. Sherry. “Give him two more milligrams haloperidol, one milliliter liquid lorazepam, and two milliliters of liquid morphine. Leslie the nurse is on her way up there.”
It is a 45-minute drive.
He was pacing and heading for the door. He continued his short loop of thought. Every ten seconds I had to find a way to stall him and try to calm him. It was light out now, but in his extreme state of psychosis, he’d be much harder for me to control outside. Besides, with all the haloperidol, he could drop at any minute. He’d now had enough to sedate an elephant.
It was then I had a flash from heaven.
“That was Sherry,” I said. “She says Leslie is on her way with our passports. Then we can leave safely.”
As soon as he heard the word “passport,” his body relaxed.
“They want me to give you some more medicine. It will make you feel better.” He self-administered the lorazepam and morphine, swallowed the pills.
“These might make you sleepy,” I said. “Why don’t you lie down?” He took the few steps to the hospital bed on the other side of the room.
“Leslie will be here in half an hour, then we’ll go,” I said.
He nodded and closed his eyes.
He never opened them again. He died about ten hours later.
Friends of CC and Jack have created a GoFundMe to help CC with Jack’s medical bills. Please share and contribute if you can.
Wow! Brings back memories from when my son’s father died from brain cancer. Really rough. You handled it beautifully. Love p
I remember this Peggy. I didn’t realize it was brain cancer, but I remember the powerful story of you and your son caring for him. Caring for one’s former spouse in this way is inspiring. Now I realize more of what you went through, and how much it bonded you and your Jack together. Love you!
Your presence of heart and mind in his raging, fading light was brilliant and brave. As is your telling of this last day. Loving you.
Thank you Sweet Angel.
Even though I knew this, reading it was just heartbreaking. Bless you forever for finding ways to comfort and calm him in the ways that he needed, and disregarding what you needed. This was truly a selfless act of pure love. He left this life with dignity, and that’s probably the greatest gift you can give someone, especially a proud man like Jack. Hugs.
When he first went on Hospice, I never dreamed he’d gain strength. He went out like the warrior he was.
So heartbreaking, Carolyn. I’m so familiar with such episodes, they bring back my childhood with my very ill mom through her psychotic episodes, the terror, the heartbreak. Your pain is so raw, I am glad that you are courageous enough to share it with us. Your strength will get you through this time, and I think that, with healing, your feelings of this great love will be the ones that stay with you.
Thanks Irene. It is powerful how many people can relate to my experience. Before this, I had no idea what others went through with illness that cause psychosis. The fact that you navigated that as a child is mind-boggling.
Oh Carolyn, this story is familiar. Brian’s most lucid moment before he died was 3 days before when I asked hospice about Haloperidol and he insisted that he not be given it. “I know what that drug is and I do not want it”. We did 25 milligram of methadone plus morphine as needed and Aderol. I would beg him to not take too much because I missed him so when he was out of it. Two days before he asked me to sleep in the same room and hold his hand. The day before he begged me to get him out of the bed and take him to the VA. He then insisted I call the doctor to tell him there was a missing piece and he needed to talk to the doctor. I told him to write it down…He did. It is precious to me. This dying is wicked tough. Blessings on you my dear.
I remember this time so clearly. I was reading all your posts in “Brian’s Village”. This was at the beginning of Jack’s and my cancer journey, and I was so sure he’d beat it. (And he did beat the sarcoma, at least in the short term.) Your testimony here makes me glad Jack was open to the meds; otherwise I would not have been able to keep him home. I am glad you cherished very moment. You did a wonderful job, Pam, and I hope you are finding some peace now.
Such turmoil at the tender end. My heart aches for you, losing your love while navigating kindness, and profound strength and creativity at the critical moment of Jack’s passing.
Thank you Susan. It was a wild ride.
You were so loving and so beautifully present. He is not in the ‘prison” of his failing body and you have, indeed, delivered a passport when he most needed it. Still, so heart wrenching. My love to you.
At the time I didn’t get the metaphor, but the next day! When I finally got it, it moved me deeply that he kept saying “We have to get out of here.” He wanted me to come with him! Before he died I had this powerful image of two fire-fly like entities meeting each other in the blackness of outer space and then zooming off together. Someday, my love, we’ll “get out of here” together. Thanks for holding me with such wisdom and understanding, Kim.