Monthly Archives: May 2025

Of beginnings and endings and beginnings again

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Jed, Izzi, and Sugar Ray, May 16, 2025

One of the privileges of life is to be there at the beginning and the end.

The miracle of my own pregnancy, delivery, and birth aside, my first experience of new life, was the birth of my dear friend Mara’s son Gabriel. He was born in the birthing center at what was then Roosevelt Hospital on the Upper West Side of Manhattan. She’d been in labor for quite some time, when all of a sudden, imminent birth came upon us. In the ensuing haste, I became her stirrup, bolstering my body against her bent leg as she pushed. I had never felt such power or connectedness to the cycle of life, and still count it among the most extraordinary experiences of my life.

Standing watch for death is no less miraculous. One feels through the touch of the skin and the cast of the eye how the body begins to let go. Shutting itself down into a dream like state of near relaxation.

Sitting with Jed as he begins to transition is no less extraordinary even as I feel the pain of watching my partner in life transcend our plain of existence. I find the rapidity of change to be the most difficult to contend with–an infusion of painful awareness that shoots through my psyche like a bullet train until I am able to normalize again; experiencing the all to human need to construct reality around the unfathomable.

Izzi and I spent today hanging out with Jed. We watched Soprano’s episodes, played Bette Lavette albums, chatted away. Sat on our computers. Wandered in and out of his room. Fed him bits of pureed food and sips of water from a spoon.

We told stories.

Talked about the future and the trip we want to take together.

Expressed our love.

The two hour interval

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Jed with his dog, May 6, 2025

Anyone who has every cared for a bed bound person is familiar with the necessity to reposition their loved one every two hours. This is to avoid and/or is part of the treatment for bed sores.

Yesterday I used one such two hour interval for a manicure and pedicure. The self-care felt evident, but more so the chance to drift as a very kind young woman from Southern China, carefully washed my feet, scrubbed my heals, massaged my legs, and applied nail polish before repeating a similar process on my hands.  I appreciated how she used a portable fan on my feet as she applied polish to my fingers–and used a portable fan for each hand in between her ministrations.

Meanwhile, it’s four weeks since hospice care began and I’m in a same-o, same-o frame of mind.

Up by 7:30 AM no matter what time I fell asleep the “night” before, to allow the home health aide “clock” in from my cell phone.

Gloves on and the work to give him a wash, change his shirt and his diaper, change the “chucks” – the absorbent disposable mats under his body – and every few days, the positioning pad and fabric mat. It usually takes about an hour. And then breakfast, pureed yogurt and fruit with a little nutritional yeast thrown in, or oatmeal and apple with a bit of smashed up walnuts and a couple of spoonfuls of maple syrup ’cause why not.

Meds are next. The ones that help Jed stay calm and out of pain–a new wrinkle now that he is bed bound: neck pain, stiff joints, where a turn without supporting his head mean agonizing moments until we right it.

Jed sleeping on his side, May 15, 2025

Then sleep. A two-hour check. Turn or change then turn. Then two more hours, and change, lunch: smashed avocado and cottage cheese, or an egg salad, or left over pureed mashed potatoes with spinach. More meds, time upright to digest and then turn.

Plus two-hours, and again, till dinner, and more meds, and then the four-hour turns. at 10:00 PM and 2:00 AM. Those are the hardest. I am tired. And not sleeping enough. And sometimes doing the 2:00 AM on my own because the workers don’t work overnight. When they can help they do, but one worker in particular informed me last week that she can’t do it anymore.

The 2:00 AM on my own has its own rhythm. The repositioning is the hardest, but I am beginning to get it right. I find that bathing him in the half light has a kind of soothing appeal. I take my time. Careful to wash off every last bit of Desitin and biological matter that clings to him. Once I am done. I sit for a while. Watch him drift in sleep. His mouth open, as he draws breath. His body otherwise still resting on a mountain of pillows and flannel PJ bottoms that we stuff strategically to ease his comfort. 

Last week Izzi started to come to help. We bond even deeper as we minister to him. We fill his nights with our love. Lie in my bed afterward at 3:00 AM, unable to sleep, watching old Sopranos episodes.