My senses are out of kilter as to time and place. I will think it is Tuesday when it is Monday. Saturday when it is Friday and vice-versus.
The house feels larger even with Izzi staying here. We rattle around. Marveling at how tall the ceilings seem. At how many people were able to fit comfortably in the living room when we sat Shiva on the Monday and Tuesday after Jed’s death.
With Jed at home, the rooms had always seemed balanced. His large frame occupying the space. Balancing out the height and width and breadth even in his last weeks lying in his hospital bed. His presence still filling the rooms with echos of his insouciant smiles or his coquettish turns in one or another doorway.
Jed standing tall was a marvel. His posture perfect but tinged with a languidness that harkened back to the Wyoming roots of his General father. And yet Jed was a true Easterner. Intelligent and smart and fast thinking from all his years spent in New York City. At home, on a sailboat or a kayak, climbing a mountain or walking the G-trails of Europe, or sitting at Puffy’s Bar, or writing one article or another for the New York Times, or sharing a pint of ice cream with Izzi. Talking politics or mycology or the origins of fire as the basis for the industrial revolution.
Frontotemporal Dementia robbed him of so much of that. Slowly. Insidiously. Painfully. As a horrible march down the rottenest of fetid paths lined with the scary monsters of childhood nightmares. Still, there were things he could hold onto. His three quick kisses to the air when one or another of us came into view.
The whispered, “I love you.”
The moment of sudden lucidity in his last week when he looked at Izzi and said, “I’ll be there.” For Izzi. For the milestones and triumphs in Izzi’s life to come. His fatherhood still there at the last.
The sway of his body as music played.
Jed still in there a little. Struggling to breathe. To live and release enough to pass on.
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.
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.
I swore it was three weeks since I put my sweet man on hospice care.
Today, however, marks two actual weeks in spite of the tricks time is playing on my mind and heart. Two weeks, and he is sleeping more. Eating less. Drinking less. Weaker. And yesterday, despite everything we are doing, he was diagnosed with a grade 2 bed sore just below his coccyx.
Two nights before when we discovered it, and having taken a photograph forwarded it on to Jed’s hospice nurse, she wrote back quickly saying it was a bedsore. It was a horrifying moment. A crushing moment. A moment of recrimination deep into my soul: How did I not see it before? How can I cure it? Make it go away overnight with a huge schmear of Desitin?
The clinical classification of the wound during his nurse’s regular visit yesterday gave me the sense that Jed is truly on this journey. A moment to be etched onto my soul. Mostly sad. Resigned. And more sadness.
The realization that despite the best efforts of bathing and drying and keeping the skin lathered with this and that product, skin breaks down. That the body doesn’t heal as fast. That he is truly at the end of his life and no amount of wishing and hoping changes the course.
When I spent 10 days in a silent Buddhist mediation retreat years ago in Thailand, I was taught that all things have a beginning, a middle, and an end. The walking mediation practice seemed to exemplify that concept the best. One starts off walking with the goal of walking 30 paces or so before stopping, turning, and beginning again. I admit to anxiety and discomfort on my first forays. Would I be mindful enough to stop at my appointed place? Or, would my mind wander and thereby miss the ending, so entranced in the mind-movies we invent we lose track of ourselves in space and time?
After a while, I got it. I would walk, set myself some landmarks and starting out feel exhilarated. Towards the middle I could begin to feel that my goal was nearing, but that the place where I was had its own beauty, its own interest. At the end, I felt a sort of arrival. That my task was done and that I was ready to start it anew as I stopped, took in where I was, turned and set out again with a new vista and orientation towards the place at the edge of a field where I had chosen to walk.
Contemplating Jed’s journey, I feel the vistas for him. The morning light in his room as I open the curtains, and how it casts light at the edge of his bed. Our time of bathing and dressing him. Anointing him in creams to keep his skin protected from the this and that of the day. Preparing a pureed meal and then feeding it to him. Providing his meds crushed in applesauce or bananas and strawberries. Setting him in his bed. Turning him, and on throughout the day into evening. Watching him sleep. Whether it is me or Izzi or one of his lovely home health aides. Guarding him. As the journey of his life slows. Reconfigures towards what will be his inevitable turn…
Tonight is Kol Nidre, so named as it is the old Aramaic prayer Jews around the world will sing annulling all oaths and vows made before G-d at the start of the Day of Atonement, or Yom Kippur.
If that felt like a lot, believe me, it is a lot. And hearing it sung feels as heart wrenching as it implies as it signifies the beginning of 25+ hours of prayer, self-reflection and fasting–along with entreaties to G-d and oneself to be written into the “good” book of life for the coming year.
This morning, like an ersatz acolyte in training, I figured I would use my time boxing at Gleason’s Gym to clear out my mind for the mental and emotional gymnastics that Yom Kippur would bring.
Meanwhile it was hot, hot, hot and humid, and as I went through my first four rounds of shadow boxing, I became bathed not only in my exertions, but a less than charitable feeling as I angled for the portion of the ring underneath the overhead fan against all comers.
“Oy,” I realized, “Yet another thing to seek forgiveness for.”
Still, by the time I was on the focus pads with my trainer Lennox Blackmoore, I was indeed more in the moment, less concerned with the fan, and working on the exact angle of my head as I dipped under to bob and weave among the other technical corrections I was seeking to make as we trained. I even felt like I could go for a fifth round of pads, and although I gulped sips of water between rounds, and I was just short of panting, whatever it was I was aiming for in the “clear one’s mind department” was starting to kick in.
But that doesn’t mean I was really any closer to getting the whole forgiveness thing.
Sure, I can forgive another their “trespasses” and mostly do. I work hard at that and do bear it in mind not to attach to the behavior of others even when it violates me to a degree. But I do bump up against things. The “big” violations that become harder to deal with. Frankly, the closer they are to my core being, the harder those, “I forgive you,” words become. And then I also have to wonder where the line is between not attaching to the behavior of others and the psychological state of disassociation I have entered into from time to time over the course of my lifetimefrom the deep pains and in some cases emotional trauma those acts have caused.
All of that is difficult and can set-up a spiral of clarity to defensive posturing as a tornado of the soul. But that is not my understanding of what the day is about per se. Rather the purpose is here and now–and has less to do with forgiving others than calling out oneself for the crap we’ve pulled all year, such as how not forgiving another may have set up behavior we need to ask forgiveness for. Subtle. Yes. But that’s the point. It’s all about one’s own behavior.
I hogged the fan in the ring… I was snippy to my husband… I didn’t take my friend’s mother’s call… I removed someone’s laundry from the dryer… I said I was going to make dinner, but binge-watched The Bad Batch instead.
We are talking countless acts that I will have to pound my chest about.
But it will be the deeper reflections that I have to really sort out: Can I forgive myself for being me? For being less that perfect? For thinking a thing, but not always doing it? For my humanity? And frankly, to my mind, for those acts where I cheated myself?
I am grateful for the chance to renew myself. For taking a day to cleanse as I go forth into whatever the next space will be. Will I be perfect at atoning? No. I can’t even say for certain that I will fast for the full 25+ hours or stay online for all of the prayers. But I do forgive myself that. It’s my intentions that truly matter. My intentions for a good and full year doing all that I can to live my best life.
I will close with this:
To those I have wronged, I ask for forgiveness.
To those I may have helped, I wish I had done more.
To those I neglected to help, I ask for understanding.
To those who helped me, I sincerely thank you …
Gmar chatima tova – May you be inscribed in the book of life for good.
Cantor Josef Rosenblatt singing Kol Nidre from a 1930 recording.
Frontotemporal Dementia robbed him of so much of that. Slowly. Insidiously. Painfully. As a horrible march down the rottenest of fetid paths lined with the scary monsters of childhood nightmares. Still, there were things he could hold onto. His three quick kisses to the air when one or another of us came into view.
Girlboxing 