Tag Archives: Caregiving

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.

 

 

 

 

 

A room of my own?

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The New Year has certainly brought its challenges. I planned on a slow start. That way, I’d have lots of time for the next steps of my new book, The Promise of Women’s Boxing, set to be published in June.

What I got was my second bout of COVID-19, and worst of all, Jed came down with it. Sure, there was sneezing, coughing, fever, headache, and some GI discomfort, but for Jed, there was also a sudden wave of confusion that was scary for both of us.

He quickly went on a course of Paxlovid to try to squelch the illness as quickly as possible, and for me, a turn in Izzi’s old room, where I’d set up my work area but now, a bedroom of sorts to make sure my non-stop coughing didn’t disturb Jed.

What I didn’t expect was a night of calm sleep.

Yes, I still responded to the sounds of Jed in the night. Even mopping up the floor where he’d had an accident, a feature of his COVID-19 response. But my time alone in what had been Izzi’s room was a respite of sorts. Time alone to drift. To sleep. To not sleep. To be fitful. All the moments that one has, but unscrutinized and interrogated. I was not awakened in the middle of the night; not plagued by my caregiver’s grumpiness at never having a break.

I’ve written about a caregiver’s need for self-care. Putting that into action is something else again. For me, it’s been a combination of claiming space to write a book, to go to the gym, to sit in a drift in a cafe when I have respite care from Jed’s companions Lynn or Maya, or some other action. But I admit to its being fleeting at times, and as Jed’s illness moves forward as an inevitability, I’ve come to learn that those moments to oneself become more and more a required feature of day-to-day life, any guilt about it be damned.

I also admit that it is unsettling at times. As Jed’s ability to recall who I am or whether we are actually married or not becomes a fact of our lives together, the notion of a shared room recedes as well. And yet he’ll ask, “Where are you sleeping?” Feeling his way to a past where we’d never have slept apart.

In those moments, I feel a shattering loss.

An echo of what was.

And there is a grief in life that can become so great that receding into Izzi’s old room becomes my only defense against a sense of utter devastation.

So now, Izzi’s old room is my room. The place where I climb into my bed at night, having firmly wished Jed a good night at the end of our evening routine of washing up, brushing teeth, and turning out the lights.

 

 

 

Time is a foreign country …

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Time is a foreign country.

At least I think it is.

Days meld. As does the precise time on the clock. From intense activity to drift, with Jed in a place outside of time, outside of locale, outside of the ordinary and the distinct.

In the journey that is my caregiving world, I work hard to lean in. To accept the tickles and jokes. The multitude of “I love yous'” that come my way across the day and the night. In between sleeping. And wondering who is in the house and where the bathroom is.

I feel for his dislocation, but he takes it in stride. Smiles. Says, “is anyone here?”

I say, “No.”

“You mean it’s just you and me?  Yay!”

My heart smiles and aches. Just us and not us.

We’ve been out a bit.

Mani, pedi, haircut and shave day. And a lovely walk. Pizza. The weather fine. Observing flowers. The new green of Spring leaves. The many, many babies out and about in their strollers.

This last his joy.

New life. Flowers. Babies. Toddlers. Children.

He lies down on what used to be Izzi’s bed as I work at my mother’s old sewing table on the other side of the room.

Jed and Sugar Ray.

Pals.

Sharing the space. The company. Being near. Our little family with Milo our other kitty off somewhere … and Izzi long since on her own … though one of us, always, on her visits home.

Doctor’s appointments, medical tests, companion caregivers come and go. Days blend some more as do the new normals. With me forgetting, two Fridays in a row that it was a companion afternoon. And, truth be told, my joy as I opened the door. Whew. A free few hours. Hours I worked on my book about women’s boxing before taking a lovely unfettered walk.

And now a Saturday. Jed full of the need to sleep. On his bed. In the room where I work. Padding in and out. Before he’ll organize his books and and clothing for the umpteenth time.

“It’s me again,” he says, standing at the doorway.

“Hi,” I say.

“Goodbye,” he says walking off to the living room.

Been a while …

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Budding tree, Cadman Plaza Park, Brooklyn, March 2, 2023

I’d say my vision has certainly been selective of late. Well actually that’s pretty charitable. I’ve been downright sad with a tinge of hopeless, which means the exterior world has a way of disappearing. Too difficult to negotiate with feelings that make it almost embarrassing to speak any sorts of truth. Even to those closest to me or to the folks I know who are caregivers and connect to those feelings more often than any will say.

Staying present is this issue for me.

If one is present in one’s emotion, that means leaning-in to sadness or anger or general grumpiness or happiness or joy … the full gamut. Being present in joy brings bits of euphoria, of seeing a full world of shimmering glory. Even the potholes of life. The bumps in the road. The little imperfections. All take on the caste of beauty. Of wholeness.

When in the ooky doldrums of a mental flu, not so much. And for me it’s the biggest trap. It’s when I go silent. When my world view shuts down. When the out there of day-to-day life separates itself from the interior floods of anguish or rage or any other state that isn’t perfected as a shimmering … yes joyful … reality.

And them I’m alone in it. Unnamed. Unknown. Emotions buried with little bits of leakage that come out disguised in a hail of intolerance. In why me-isms. In do-I-have-to-isms. When really I’m sad because my darling man just asked me if we were really married.

I had nodded my head. Started to tell the story.

He professed a lovely surprise that we’d been together for 26 years. That we’d married each other the first time on the top of a mountain in Jordan 25 years ago; had done it with a Rabbi and a New York City marriage license, a second time, 23 years ago at a decommissioned Synagogue on the Lower East Side.

How it had been the wedding of the decade with waiters so cute everyone fell in love with them.

How our friend Ray started out with Mozart and segued to Sentimental Journey as we walked down the aisle. How our recessional became a Conga line to a 1930s recording of a Cuban band.

How the magic of the place gave our Rabbi visions of its glorious past, channeling its former Rabbis and Cantors as he intoned the beautiful words of our marriage ceremony.

All of that in a moment. One I feel now. Much removed. Three weeks later. Tears in my eyes, thinking about loss and gain. About the lovely smiles on my darling man’s face as I told him the story of who we were.

Caregiving for a dementia patient is a mixture of joy and cruelty.

My glorious man tells me he loves me all the time. Middle of the day, middle of the night, opening a bathroom door, as I am washing dishes.

What isn’t there is the connective tissue of our 26 years. The good of them. The rough patches. The sharing of life and one’s deepest thoughts and feelings.

That’s what I am mourning lately. What feels so hard and interrupts my day-to-day. The connections that bind. The reality of loss. And why, at times, I just don’t want to see.

Caregiving for a dementia patient is not for the faint of heart–but you are not alone. There are organizations that can provide a lifeline to caregivers from groups to engage with, to real help finding resources. Here are few to consider (click on the name to open a new tab).

Alzheimer’s Association

Family Caregiver Alliance – Frontotemporal Dementia Resources

In New York City – Caring Kind

 

 

 

 

Of endings and beginnings … Welcome 2023!

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Paris-Brest for New Year’s Eve

I admit to a hard December. Everything out of sync. Stressed. Uncertain. Out of balance. Scared at the enormity of the challenge of caregiving. But finding joy. Moments of peace. Being present even when things felt chaotic. My therapist even asked me if maybe I was done because my goal of living in the moment of my emotions was reached.

I was, admittedly, taken aback.

“What? Finished?”

Reflecting a little bit more I said, “No. Not yet.”

That hesitancy was the realization that caring for one’s mental health is never over. And having that chance to dwell for 50 minutes every couple of weeks is like finding bits of gold panning in the stream of one’s own psyche.

And yes. I’ve been really depressed in my life so this all feels so normal. Sleep well and I have that much more opportunity for riding the ebbs and flows with ebullience, sleep too little and I’m grouchy and stressed. Pretty simple formula!!!

Meanwhile, in the real world of day-to-day … I have a book to write (I am behind), Jed’s health to attend to (Cardiologist on Friday), part time consulting work to augment the bills, and all the rest + those kitties.

Still. The New Year is a pause. A chance for something. A blank slate to relish in. Clean, unlined, and absent of any smudge marks from the erasures of the things one doesn’t feel inordinately proud of.

2022 was an enormous year for me. I can brag about getting a book contract for a new work on women’s boxing, a monthly column for my friends at Women’s Fight News, and a memoir piece to be included in a book called The Difference (working title), that will be published in 2023.

I also had a blast with my iconoclastic pals Chris and Eddie on our WAAR Room podcast and finished up a nine month mastermind group with dear friend Achim Nowak’s My Fourth Act,which brought me new connections and new friends.

As for 2023. So much to do! And not so much resolutions as a list of challenges!

  • Finish The Promise of Women’s Boxing (working title)!
  • Be more in balance with caregiving
  • Maintain my journal again (yep, been a while)
  • Write pieces for Girlboxing with more regularity
  • Be more consistent in the gym! Months cannot go by any longer!
  • Mindfulness in all things
  • Nurture my friendships and explore new ones
  • Expand the community of caregivers
  • Have fun

I have so appreciated sharing the bits and pieces of my life-and all of you for reading them and giving of yourselves in your thoughtful comments and insights. I used to think I could do things alone. Perhaps a sign of finally growing up is knowing that I can’t.

Thank you all for teaching me that.

Wishing everyone a Happy New Year and a fabulous 2023!

 

 

 

Cat dancing through the week …

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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.

 

 

 

 

Falls, health, and moving forward

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Caregiving for a person with any sort of cognitive degeneration is never for the faint of heart.

What’s breathtaking are the decision making processes one goes through for issues large and small. The hardest have to do with health and contending with making choices on behalf of another. At times it feels as if one is skidding across a slippery floor; stepping carefully but with uncertain footing–an apt analogy for the feelings of inadequacy that surface in the throes of working through the decision tree.

Meanwhile, I woke up at about 5:30 in the morning on Monday to the sound of a loud thud. The last thing I could have imagined was hearing Jed’s voice calling out, “help me, get an ambulance, call an ambulance,” in the saddest, softest tones possible.

I quickly surmised that he had either fallen out of bed or fell as he was stepping on to the floor. I’ll frankly never know, but on his way down, he sustained a small laceration on his ear, which bled profusely, along with a mixture of confusion and fear as he struggled to get up.

Helping him to the bed, my next task was to soothe him, while taking his vitals, dressing his wound, and eventually assisting him to the bathroom. Quite surprisingly, he was able to walk there and back on his own with a determined assurance. He was also able to communicate readily by that time, and with no obvious injuries other than his ear, I made the judgment call to forgo an ER run just then, in favor of letting him rest and get back to sleep for a while. I on the other hand, watched, fretted, listened to his breathing, and worriedly scoured the internet for all things falls and traumatic brain injuries.

About nine in the morning I left a message with his neurologist. I spoke with the nurse from the practice around one or so, and at that point, agreed to go to the ER to ensure there were no internal brain bleeds, et al. I had already been giving him a concussion protocol for a mild traumatic brain injury, (thanks to Izzi), but as he tends to be confused in the morning, following it was a bit tricky. He also noted feeling “fuzzier,” so going to the ER made sense at that point–especially since it was the same hospital chain as his neurology team.

A car service ride later, we were fairly immediately brought to a room in the facility, where he was promptly poked and prodded for a couple of hours including vitals, EKG, CT scans, and a full blood work up looking for signs of head and neck trauma, and potential causes for the fall.

Luckily, his brain did not sustain any injuries, but he did have a couple of anomalies in his bloodwork that I’ll be following up on over the coming days–reminding me how much I forget he is also a man in his 70s and prone to the vicissitudes of aging.

I should add a word about ER visits with a dementia patient. Impatience does not begin to describe what happens when the tests are completed. I also didn’t bring water with me (tip for the future)–so the grumps were exacerbated by a bit of dehydration until I grabbed some from a nurse. My challenge was engaging him in things to do while we waited for test results, so out came the iPhone with varying Spotify lists and YouTube videos. He found his favorite; however, on his own–folding his bed sheets, which gave him something to do for a good 15 minutes or so.

Once home, I’m not certain who was more tired, but we managed a quiet few hours. Izzi had joined us by then which gave Jed a wonderful boost, and afforded me a few minutes to collapse in bed.

I’m still assessing what happened and its meaning moving forward–aside from the knowledge that I need to figure out how to make the bed area safer, and really start to think through a better “to go” plan for any future emergency situations. I also always tend to think more about the effects of his cognitive decline and less so about the other things that might effect his health. And yes, I do have my work cut out for me to fortify those aspects of his care as even with once yearly visits to the internist, things happen.

Right now, I’m just taking some deep breaths and reminding myself that looking forward is always an unknowable set of possibilities that one must be open to. That, and a decent night’s sleep.

 

 

 

 

 

The thing about a good night’s rest

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I admit it. More to myself than anyone else. It’s been a long haul lately.

I came back from a week’s writing retreat and boom, whatever demons that had been lurking, engulfed me as so many microbes of infection. Seeping in everywhere at once, I’ve spent days that have morphed into weeks swatting away the no-see-ums of depression, hopelessness, and the nagging sense that I have no where to go. And in between, the daily stuff. Writing. Aiming for vulnerability. Spending time with Jed so that he feels loved, and wanted, and needed, and relevant.

And we’ve been through Jed’s rounds of medical appointments. His latest MRI showing progression, but only a small amount from last year to this year. Of course, adding them up, one year, plus one year, plus one year, and so on means more than a little when counted together. But it only confirmed what I already touch. The new realms of confusion. My own sadness at facing this new normal masked by a determined bravado, but in truth, as palpable as Jed’s “I do not understand” expressions.

Back in my late-30s, I experienced a major depression. Each day was a buzz of activity from my early morning runs on through my exhaustion as I rolled off to sleep having worked till 7:30 or 8:00 at night, and socialized or something else till late in the evening.

In the spaces in between, my eyes would leak tears as I tried to suppress the misery I felt. The aloneness. The despair. All wrapped in the package of not knowing what it meant to be. And how ridiculous I felt at being so late century. So post-modern. So wrapped up in the throws of my existential crisis. Not for a minute allowing myself the truth of it all.

In moments where my guard was down, I could hear my own ironic inner core whispering that the payment was due for an adulthood spent existing without making certain I’d examined all the nooks and crannies of hurt and trauma. For not living the truth of my own existence.

“Not those, again,” I’d decry, while also knowing that my life was as precarious as my sense of being. That I really was tipping over the line a bit, so much so that friends talked and queried, and offered me sanctuary.

So, here now, 30 years later. So much of a brilliant life later, I feel the edges of it. Not that tears leak, or that I despair, but that it is easy to lose sight of one’s reason and place in the world if one remains cut off from living it. From the touchstones that are the little bits of the jigsaw puzzle that is life and has just as much meaning as the larger corner pieces that anchor one’s self to the reality of one’s life.

Yesterday, I woke up having had a brilliant night’s sleep. I was so well rested and in turn felt so refreshed and happy. It’s not necessarily that the no-see-ums had spent their annoying course till next time, but I was reminded that life is this wonderful panoply of joy and fun intermixed with the range of stuff that can sometimes feel like quicksand and at other times like the sweetest of clouds scented by the privet flowers that have permeated the air in this part of Brooklyn.In other words, it’s just life. A moment’s blip in the scheme of things. And truly, nothing like a good, restful night’s sleep to bring on the brilliance again.

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A reminder that caregivers can face special challenges–and that you are never alone. Here are a few resources:

Alzheimer support for caregivers

AFTD caregiver support

Caregiver.org caregiving and depression

 

 

So much done

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Sometimes we all need to remind ourselves that we do a lot — and not so much rest on our laurels as to acknowledge the good work accomplished, with a nice “atta-girl” pat on our own backs.

For caregivers, that is especially essential because we can feel our lives to be nothing more than a Sisyphean task wending its way as so many cycles of frustration and grief.

Successes though, do happen, and should be celebrated!

My big success has been the introducing companion care to Jed. For three hours, two days a week, he meets a lovely lady who hangs out with him. It is a bit rocky at times — because it is kind of hard to get to know someone new in the best of circumstances — but they persevere!

Jed and his companion have chitter-chattered, gone for a walk to our favorite local Pizzeria, tried and failed to do a crossword puzzle and two or three art projects, but through it all, it has given Jed someone new to engage with, no mean feat in the pandemic era, which has enforced isolation.

The other laurel I am allowing myself to take a bow for, is gaining approval for Jed to have in-home physical therapy. Provided by the Visiting Nurse Service of New York, he will have two weekly sessions aimed at helping him regain his physical stamina, muscle tone, and flexibility. And the timing couldn’t be more perfect! With Spring underway, there is no better period to walk about the side-streets and parks of Brooklyn as flowers begin to bloom and bird migrations fill our skies with beautiful sights and sounds.

And finally, Jed had his jab number four yesterday, with the fervent hope that he continues to remain COVID free!

So, yup! Three-cheers to myself for this week’s accomplishments. I’ll take them where I can find them.

The Visiting Nurse Service of New York (VNSNY), is part of a national network of organizations providing home health care services.  A doctor can put in an order for a range of services including, skilled nursing, home health aid, and rehabilitation services.

 

Up before sunrise

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It’s been a while since I was up before the sunrise.  I’d forgotten how noisy my street is at 5:00 in the morning with trucks making deliveries and buses idling before rush hour begins.

Before I retired, it was the time I had to myself. I’d get up around 5:00, patter around a bit, and then shower and dress for the walk to Gleason’s Gym or on off days, perhaps practice yoga before getting ready to leave for work.

Being up now feels like a holiday. An extra bit of time I hadn’t counted on. So far I’ve been filing away the huge pile of stuff that had obscured the wooden patina of my old pine desk, the one piece I have from my aunt. And yes, grabbing the tax papers I’d missed to send off to my accountant who is still doing taxes remotely.

The new cat, Sugar Ray, is not quite certain what to do. So far, he’s pretty much been letting me sleep until at least 8:00 am. He was certainly happy to be fed earlier and has been sleepily following me from room to room as I’ve been filing things away. And as is his way, now that I’m at my desk, he’s back at his perch on the window sill watching the early morning traffic go by. My perfect little sentry who has thankfully found something more interesting than my laptop.

As if on queue, with the perceptible lightening of the sky, I can hear the first faint sounds of bird song above the din of traffic noises. The sounds floating in on the top register as little bits of sweet chirping. Locating my city dwelling space within the urban landscape of life that flows in and around us if we bother to look.

Soon the birds will fly by as ephemeral whisks of light. Fleeting glimmers frozen in memory as something to delight. And so it goes.