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…
Sugar Ray, the pugilist Georgia street kitty by the window on a Brooklyn morning
Some weeks I just feel so whipsawed.
Apropos of a lot it turns out! Elections, being less than on target writing my new book (yes, yes, I will make it up, but oy!), circumnavigating the rise in hate speech everywhere it seems, my daughter’s great week starting a new job, so yes, lots of joy for her, installing safety rails (bed worked, toilet, no), housekeeping (don’t ask, had Jed and his companion vacuum yesterday as a “therapy” exercise!), lots of healthcare discussions re: upcoming appointments for Jed (success and a big thank you to Lenox Hospital Cardiac Electrophysiology for their kindness and attention) … and then me.
Yes. It is okay to ask, “what about me”!
Starting with the inventory, ’cause hey, can’t take the project manager out of me:
A few months in with a therapist … check.
Boxing training … nope.
Self care … hmmm …. no where near enough.
Being centered in my emotions … no where near enough.
Time for myself … no where near enough.
Sleep … haphazard at best
In the tradition of the don’t mourn, organize school of action, the best way I have found to move forward is to put the mechanisms for self care success into place.
Yes, an inventory helps, but one needs to really ensure the full picture is captured along with some thoughts on how to mitigate those areas that are clearly putting one’s mental health and well being in jeopardy.
Sugar Ray sleeping, Brooklyn window
Starting with sleep and knowing I must practice what I preach: it’s all about routine and creating an environment of calm and serenity along with ensuring one is adequately hydrated and not logy from having had a huge meal right before bed. One should also put away the smart phone, iPad, or whatever other electronic devices are overstimulating the mind with crazy short bursts of sound and light. No, one does not need to check Twitter at one in the morning or watch crazy YouTube videos or TikTok. Just turn it off–and if one must engage with something, go old school and read a book until the eyes go all swimmy and one drifts into restful sleep.
Another big one is time for oneself–and not only time, but meaningful time. Laying sprawled on the couch mindlessly streaming baking shows for hours at a time is not the answer. I can surely attest that the practice is just as addicting and mind-numbing as any narcotic and other than a lousy alternative to sleep, it does nothing for one’s state of mind. I am a huge offender of this one–not only seemingly watching, but simultaneously playing ridiculous games on my smart phone. It is the opposite of mindfulness or appreciation for the little bits of time I can have to myself, and decidedly not restful, in fact, quite the opposite. And no, that doesn’t mean I can’t watch the next episode of Andor (or equivalent show) when it comes on, but it does mean I shouldn’t obsessively and mindlessly watch three more hours of nonsense I cannot recall because my mind escaped into a video induced haze. The solution I am striving for is to actually schedule the time on a calendar. From writing time to sleep routines and so on. Given that the stratagem has had splendid results during my work life, why not use it as a tool to better organize my life into spaces that can provide me with solace and meaning?
As for living in the moment while actually experiencing the accompanying emotions — that’s a huge one. If one lives an “awake” sort of life, it is much easier to find, touch and be in those experiences, but again, that means taking a turn at mindfulness in a way that can difficult to do if one has been out of touch for a while. I’ve graded myself a letter grade of C in that regard, but I’ll actually tweak it to a C+/B- given that I do hit the mark from time to time and can recognize when I’m letting myself off the hook. The emotions around Jed’s fall swirled for days before I really landed in them, but as I write this, I know that the work of being in the moment had been at play in the background.
Just doing this bit of writing, and trying to reach out to readers whose lives are circumscribed lets me know that I am on a more positive path. And for those caregivers among you, I can only say that mindfulness, even in tiny spurts, does bring a kind of solace and peace that allows the smiles to come back, both inside and out.
I can’t say when I’ll get work out with my beloved Lennox Blackmoore at Gleason’s Gym or feel that I’ve got the self-care fully in place, but I can say it is a work in progress. And as with most things in life, that’s a positive in the scheme of things.
Many women I know (and a few men-truth be told) are perpetually on a diet. Sometimes its even to the point where their diets are on a diet and the kind of thing where one can discern the caloric and fat content of a Starbucks Morning Bun at fifty paces.
Way back in the day — say when I was fourteen and in my grandmother’s kitchen in Far Rockaway — She’d put a plate of food in front of me that could feed half of Queens and then, sitting next to me, patting my hand would say, “Eat, darling, eat. You eat like a boid. Eat, darling eat.”
Now mind you I LOVED her stuffed cabbage, but, we are talking one at a time, not three, not to mention, the candied yams (at any time of year), stuffed derma (never one of my favorites) and a large breast of paprika chicken.
That was just lunch — not a holiday meal where a plate like that was the appetizer to be followed by Matzah Ball Soup (hmmm), gefilte fish (’cause there had to be a fish appetizer course), Turkey (if it was Thanksgiving), what my grandmother called “meat” which was pot roast, carrots and potatoes baked with tomatoes to the point where the meat was in strings, the aforementioned paprika chicken, and assorted vegetables such as beets, potatoes and peas and carrots. And we can’t forget dessert, which was usually cake (macaroons on Passover) and pieces of candy or fruit from the endless supply of bowls filled with the stuff, plus coffee (instant), tea (Lipton), fights over sneaking real milk (not kosher) versus the dried milk substitute, oh and when my Uncle Bunny was over, shots of Slivowitz for the adults at the table.
The period from Thanksgiving through the New Year brings to mind my Grandmother’s bounteous table–or as I like to call it a heart-attack-on-a-plate. And even with her many admonitions about my avian-like behavior, which frankly I never really understood, because I always felt like I ate enough for a week!
Later in my twenties, I made the schlep to Far Rockaway to an older, svelter Grandma who in fighting off her high “sugar” count (aka Type II Diabetes) had dropped from a size 18 to an 8. Still, she’d put a humongous plate of food in front of me, as if I’d been out on the velt chasing lions or something before hopping the A train and with nary a thought to what it might do to my health.
More to the point, her sense of proportion reflected a feast-or-famine mentality honed I suppose from her experiences raising a family during the Depression and her own childhood in places like the Lower East Side and East Harlem where money was always tight.
A lot of years later, however, a portion of that size is an automatic five-pound weight gain (even thinking about it gives me at least a pound or two), not to mention a GERD attack (indigestion plus a throat on fire) and an instant case of narcolepsy.
While counting calories feels incredibly luxurious in a world where many people would still look on one of Grandma’s plates of food as something miraculous, Western types with jingle in their jeans and a ready source of fabulous foods face different challenges. And if you’re a woman of a certain age like me, “water weight” no longer cuts it as an excuse.
What is required is a mindfulness about food that takes into account the body’s carbohydrate, protein, fat and caloric needs, the state of one’s health, and a moment of reflection from time-to-time on where food comes from and how it gets to one’s table. After all, most of us do not go to the back forty to pick our own tomatoes, green beans and sweet peas (except maybe in summer at our country places), nor do we pluck our freshly killed chickens, milk cows or gather our eggs at 5:00 in the morning. What we do is wander through the aisles of a supermarket or Whole Foods or the local deli or maybe even make it to a Farmer’s Market to pick up fresh foods or more than likely prepared meals (frozen, boxed or fresh) or skip it all and eat out or better yet, order in Thai.
What we don’t necessarily do is take the time to reflect on what we are eating and how it got there or how its many nutrients pass through the miracle of the body to be stripped down into constituent parts to fuel our many activities.
Whether its eating too little or eating too much, what we owe ourselves is eating “right” especially as we enter that period where food abounds and whether through many temptations (hmmm, yes, chocolate), lots of holiday gatherings or just plain anxiety, how we eat seems to get laden down with a lot of extra baggage, plus a notch or too on our belts.
Whatever your persuasion during the next several weeks, be aware that issues around eating will definitely be on the table … so think twice and if you do have that yummy extra helping of freshly made potato latkes, what the heck, enjoy, after all, it is only once a year!
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 