I'm here again tonight where I often find myself: sitting in the dark beside Steve's bed, not ready to sleep but not willing to leave him. Nights are both hard and good. They're hard and then they're good.
Around 10:30 every night, I give Steve his night meds—a pretty potent combination designed by hospice to help him sleep, keep him from choking and help with the pain he's been experiencing in his shoulders. While they sink into his system, I refill the humidifier in his breathing machine, put his bed down, change the linens on his pillow and push the bed as far to the middle of the room as it will go. He rolls in 30 minutes later like clockwork and by this time, he can hardly keep his eyes from closing. I'm grateful for the meds that help him sleep more comfortably because sleep is his only escape.
I remove the neato cup holders from his wheelchair. His caregiver, Crystal, devised this ingenious system for him to keep a spitting-cup always within reach. He liked that so much that she added another one for the remote control. What man in this world wouldn't want a carry-along caddy for his remote control? Crystal and Steve are partners-in-crime, for sure. At night, I take the cup holders off so he can move his footrest in which makes for a much safer transfer from chair to bed. How we discovered we needed a safer transfer system is a long, scary story that I'm not ready to retell just yet. (If you've never worked with someone with ALS, the best way I can describe it is to say it's like moving someone whose limbs are made of heavy jello. It's very awkward and I've yet to find a system that feels foolproof.)
With the footrest moved in, I take off Steve's neck brace and shirt and then we count down to three and I lift him out of the wheelchair, balancing him on shaking legs. He can stand long enough to let me pivot him onto the bed. I breathe a silent sigh of relief every time he is safely on the bed. He uses the suction machine and then I lift his head up from where it's fallen against his chest and put the breathing mask over his face. Nearly every time I do it, I wonder how many times I've done it in the past few years. I wonder how many times he has dreaded another night with the mask and how much he longs for the days when he could sleep without so many constraints.
I turn on the breathing machine and it makes a soft, whirring noise that has become a comfort to me. Steve lays down hard on the pillow—he has very little core control, so it's always a pretty ugly drop from sitting to laying on his side, legs dangling lifeless over the side of the bed. I lift his legs up and move his arms to an angle that is useful for him to gain some leverage.
I place a hand warmer in his palm, put his hands together and then wrap them in a towel. I cover him with several blankets and have learned to tuck them in well or he will wake me up soon, telling me he's cold. Nights are cold without muscles.
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