Tag Archives: gerontology

The long goodbye

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It has been a week.

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.

 

 

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. 

Is it really two weeks?

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Jed greeting the morning, April 30, 2025

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…

 

The Boy From New York City

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At Puffy’s, Demember 1996

The night I met Jed at Puffy’s Bar on Hudson Street, in Tribeca, the song, The Boy From New York City by the Ad Libs was playing. I hadn’t heard it in longer than I could remember, but walking into a bar that had such a great dancing beat to it had set my mood for the night and when Susan Dumois, the bartender, stepped out from behind the bar and started to dance with me, I knew the night was special.

In the blink of an eye, I sit in Jed’s room, Bach’s Suite No. 3 playing soothingly in the background as he sleeps, coughs, sleeps again.

We are at the end of his second week on Hospice.

I think I am located in it but perhaps not. I cry less. Feel less anxious, though if sleep is the measure, my anxiety comes through in the fitful hours of watching cat videos, and my new favorites the rescue beavers, Tulip, Stormy Rose, and the two tiny beaver kits, Blossom and Sprout.

I don’t write – except lists, and other easy stuff in my journal when I can take an hour to myself and sit somewhere.

Home hospice life with Jed, April 23, 2025

My sense of control comes from the stream of non-stop package deliveries of supplies for Jed. From the preparation of meals, adding Thickener, a product that literally thickens liquids to help a person with difficulty swallowing drink or eat their food. From shaving him with his electric razor careful to be gentle, and getting every hair I can find. From the notes I trade with his medical team.

What I have no control over is the relentless course of the disease. Of his sudden distress. Of his decline. Of his whispers. Of how my heart breaks from time to time.

I find the strength to face each day in the wee hours. And from dear, dear friends and family who send me their best wishes for which I will always be so, so very grateful.

A boxer’s truth

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Jed with daughter Izzi, March 23, 2025

My husband Jed and I met on a fateful night in December, 1996 at Puffy’s on Hudson Street in Tribeca, then sporting the best juke box in the City. We had one chance to meet and make something of it, and we took it. Fairly early on we discovered we shared a love of boxing. I had just taken a course at the local gym, and earlier had practiced on the heavy bag in the basement of my friend Eddie. Jed had just fought in his first “white collar” bout at Gleason’s Gym, and otherwise with his black belt firmly affixed, was teaching beginning karate at a Dojo in downtown Manhattan.

We’d watch Friday Night Fights on ESPN, regaling ourselves about Teddy Atlas’ commentary (who didn’t in those days). He was also my biggest booster when I trained at Gleason’s. And using his brilliant skills as a New York Times columnist and editor, went on to help me edit my first book, A History of Women’s Boxing.

Our affinity was the boxer’s heart we shared and our ability to push through our collective traumas to face our truths.

Jed’s always been there for me-through tough times, arguments big and small, differences and non-differences, and through the love that exudes through the pores of our being and into our shared joy, Izzi.

Jed, Brooklyn Heights, Fall 2021

Jed’s formal diagnosis with behavioral variant of Frontotemperal Dementia over seven years ago was a near on knockout blow-but Jed persevered as did I.

Round after terrible round of the disease we adjusted.

During the pandemic it became obvious the Jed was no longer able to be alone. I retired from working with the City to care for him and have continued ever since. In those days, he could still take a long walk or go to the store at the corner. And in my company, we’d retrace his former route through downtown Brooklyn: A walk up Cadman Plaza to Olde Fulton. Then a walk through Brooklyn Bridge Park before meandering our way home through the side streets of Brooklyn Heights.

Privit – Brooklyn Bridge Park, June 2021

Each June we’d walk through the rows of privit grasping it in our hands to keep the scent alive on our bodies.

We’d hold hands.

I’d give him some water – though he mostly refused.

He still walked a pace, but was beginning to slow by the Fall.

I started having companions for him in 2022. That allowed me a few hours of respite a couple of days a week and it was also still possible to run out in the morning to the supermarket because he still slept in. Our boxer’s heart keeping faith with one another-has he began to have medication to help with the symptoms and found it harder and harder to comprehend what was going on around him.

From then to now feels like a blur, but the now is a late round effort.

Jed and the care aides, April 13, 2025

This past Thursday was the last day that he walked-though he can still punch (and land some good shots that leave black and blue marks) when we turn him in his hospital bed in order to wash and clean him.

The Friday before that, he forgot how to swallow, but fought his was back to solid food.

Bed bound. Losing weight. Coughing. Endless sleeping.

Yet treated with kindness and love by wonderful women. That’s what I cling to as I take the decisions necessary to transition him to hospice care. Here at home. Among his books and enough camping gear to outfit a boy scout camp (a feature of FTD is obsessive spending!). Feeling the love of what home brings when Izzi sits besides him.

The journey of this illness is a terrible one. Yet the key has been keeping faith with our pas-de-deux. Our pact of love and faithfulness that saw us care so deeply for one another. To fight on the same team. Playing at doubles. Each of us having each other’s back. Literally.

Jed is 77. This all feels way, way, way too soon and yet he’s here. Still punching. Smiling between cursing us when he feels hurt by this or that turn. Still saying I love you and lighting up with the broadest of smiles when Izzi enters the room.