I didn’t sleep much in 2003, the year of Rich’s first cancer (lymphoma) but it didn’t seem important. I was on a mission to avoid the inevitable—waking up to find him dead beside me. Chemo-therapy was slowly sucking the life out of him. He was a walking corpse during the day, but at night he slept on his back, motionless, so it was hard to tell. I spent my nights routinely testing for movement, listening for breath. “Yep, still alive,” I’d tell myself when he responded to my light touch under the covers.
The second cancer (primary liver cancer) brought high doses of pain medication and nightmares. Rich slept but his body never rested. His legs spasmed, propelling at least one of his size 14 feet in my direction. He cried out in sharp, angry threats. He thrust his left arm straight up and wrote in the air with his left hand, which is strange because he was right-handed.
My dozing would be broken with a scream. He whimpered and thrashed, unable to find his way out of his dream. It took rough shaking to wake him, then I held him, kissing his forehead, as he sobbed. In the mornings he seemed fine but I was exhausted.
By 2006, sleep deprivation was making me cranky. The nightmares had subsided, but the flying arms and legs had not. They appeared nightly with gutteral dialogue. “I can’t do this anymore,” I told Rich. “I’ve got to get some sleep.” He suggested we buy a single bed for me and set it up in one of the other bedrooms.
“Oh, no,” I protested. “We don’t need to go to all that trouble.” Rich was always thinking long term, while I was thinking “what am I going to do with an extra bed when he’s gone?” We went shopping for a less permanent solution and came home with two foam rubber pads. They were cushions to be used under sleeping bags but I put them one on top of the other so that I had eight inches of mattress. I threw them on the floor in the bedroom across the hall and curled up with my favorite pillow between folded sheets.
I did sleep better that night, but we both missed the pillow talk. I’m not talking about sex. Cancer had taken that from us a long time ago. I’m talking about that conversation that flows easily once the lights are out and you’re settling down with your #1 fan. The every day things in whispered tones to someone who knows your history because he’s lived it with you.
The first night Rich and I shouted out our pillow talk across the hall but it was awkward especially since Rich was practically deaf. I tried going to bed with him and then getting up and moving across the hall, but then I couldn’t fall asleep.
I bought a real single mattress and frame in 2007. I didn’t mind getting up and down from the floor to sleep on the foam pads, but manipulating them to change the sheets took more energy than I felt I could ration.
The creation of my caregiver bed was an emotional milestone. The acceptance of change in our relationship, the end of our lives as lovers. Rich would never again be that passionate man I married. He was my dear sick friend, my little boy, my baby. I was his caregiver.
By 2008 Rich was in bed most of the time, surrounded by paraphernalia to keep him comfortable. So at some point I would have had to find my own bed. I probably should have let him sleep alone sooner than I did, but it was a hard thing to give up. Losing a life companion involves so many losses, all of which look better with a good night’s sleep.
