Tag Archives: Dementia

On the road …

Ragusa Ibla, Sicily, October 2025

It has been a long time since I traveled alone without any particular itinerary. If I have a mandate at all for myself it is to slow down my pace and drift.

That has proven a tall order as I find myself encountering moments of unexpected grief coupled with the inclination to fill my days from end to end rather than allowing them to unfold. Still … I’ve been managing to find that sweet spot. The first, I think, on the ferry from the Roman port of Civitavecchia to Palermo.

Palermo, Sicily, coming into port, September, 2025

Palermo, Sicily, coming into port, September, 2025

I had actually booked a stateroom for myself — a lovely little space with a window out to the sea. Having fallen asleep early, I woke up at around 3:00 AM. Making my way to the main area of the ferry, I passed by sleeping bodies in seats and on benches, before getting a cappuccinno from the lone barman.  We chatted for a bit, before I took my coffee out to the deck. The sea, the warm air, the lightening from a distant thunderstorm embracing me in the moment. I felt myself become the breezes. The bits of spray from the water as the ship steadfastly made its way across the Tyrrhenian Sea. Felt for the first time in many months a feeling of peace and the beginnings of drift I’d come to Italy to find.

I’m coming to my third week soon. I’ve been to Rome, Palermo, Malta to visit my friends Jocelyn and Tom, the ferry to back to Sicily, although that was less than two hours versus the thirteen to Palermo. Still as a travel day it had its own magic, along with the taxi ride up to Ragusa Ibla.

Now in Ortigia, Sicily … having found a cafe with WIFI, quite the surprise I’ll add, my days have more and more of those moments. Those pieces of time where I am free within myself. Yes, going to museums and all of the other “supposed to sees” that one encounters, but I also have given myself the permission to do nothing. To have a pajama day.  To start to unpeel the layers of a lifetime with Jed enough so that I do not cry every time a photo of him appears on my iPhone.

And so it goes …

The long goodbye

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

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

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?

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

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.

Time is a foreign country …

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 …

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!

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!

 

 

 

Falls, health, and moving forward

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.

 

 

 

 

 

Of caregiving and caregivers

I will admit the notion of bringing in a companion / caregiver had been and still is daunting. As seemingly social as I may be, the die-hard New Yorker in me is loathe with a capital “L” to expose myself. After all, generations of New Yorkers have lived in tiny overstuffed apartments with doors that never open more than a few inches when someone knocks on the door. Why else constantly live life in cafes, bars, and restaurants? Right? We can just as easily have “at-home” dinner parties, but seem to prefer keeping our real selves, messy desks, unmade beds, and all, to our selves. It’s how we roll, and how we live, and our preferred state with out prying eyes and the “tsk, tsk, tsk” of disapproval. Of course, once one has kids, the calculus changes a bit. The living room, kitchen and bathroom do become public as well as any rooms where kids sleep and play. But one’s own bedroom remains a sanctum free of intrusion.

But really, I am indulging in a tangent, when it’s something closer to my own sense of failure at not being the end-all of caregivers. Admittedly I am much better at it than my housekeeping, but the nagging sense that I am not doing enough does punch through. And yes. It’s ridiculous, but who ever said that being human is anything other than a silly state of affairs.

The real truth is, at this stage of unrelenting progression, having a companion caregiver to augment care is absolutely the right call. One cannot be all things and the stimulation provided by another is extremely helpful. Sure, routine is good and important, but so is changing things up a bit. Forcing conversation. Another view of the world. And a new paradigm of routine that includes the companionship of others on a regular basis.

Having crossed that divide some months ago, I’ve come to depend upon the twice-weekly time Jed spends with his companion caregiver. As much for him as for myself, it gives me some relief and the chance to hang the “gone fishing” sign for a few hours.

What I hadn’t prepared for is what happens when that is disrupted whether through illness or other changes. In our case, our caregiver became ill with COVID. She is okay, but was out for three weeks. That change, aside from worrying about her health, also meant that Jed’s world became confused — and truthfully, it set him back a bit.

After my day or two of self-recrimination (hey, see the human thing above), I started reaching out to find some alternates. That in itself has been daunting, but I have been been meeting some fascinating people along this new journey of discovery: the remarkable world of New Yorkers interested in providing friendship to a challenged person.

I’m still talking to folks and setting up meetings to see if things will work out, but what it’s shown me is that in opening up one’s self and yep, even one’s home, bits of magic can form.

Jed’s illness will continue to progress as will his need for care, but what I am finding is that in trusting myself enough to trust others, the caregiving I provide is all the better for it.

 

 

So much done

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

 

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.

Another week

Sugar Ray in the afternoon

Is it a week already since my last post?  What a blur.

I went to Gleason’s Gym on Monday and Thursday. Even added crunches in the sit-up chair at the end my workout. I felt a sense of accomplishment. The reminder of what a touchstone the gym has been and how much I miss it when I don’t go on a regular basis. The moments of self-care so revitalizing to my sense of well being.

The emotional rollercoaster has been moving forward to find part-time companion care for Jed.

I feel he needs an interesting someone to have contact with for a few hours a couple of days a week. Someone who isn’t me and who won’t invoke feelings of being infantilized from time to time. Still it gives me such an overwhelming sense of responsibility as I make decisions on his behalf. I admit that it is tangled up with my sense of helplessness and failure. And yes, I know I do not have the power to fill in the missing spaces in his brain. Or unknot the tau protein clotted ends of his neuron cell axon terminals that can no longer communicate. And no, me beating myself doesn’t help either, but the feelings are there for me to work through.

Meanwhile, plowing forward, I made a connection with an organization that specializes in matching folks up and will have a first preliminary meeting this coming Tuesday. The challenge will be figuring out how to introduce the companion caregiver to him so that it will be something that he wants to do. We shall see, but I have the hope that once we get past the introductory phase, it will help Jed engage more. And maybe even pry him outside when the weather eases up a bit more.

And so it goes.

At the dentist

 

One of the issues caregivers face is ensuring proper dental hygiene for their loved ones. As memory slips, so does the concept of the kind of routines we take for granted as part of our normal day. The wakeup, hit the bathroom, shower, shave (if needed), floss, brush teeth, et al., becomes an illusive construct. The end of day wind down is the same. A foreign movie without benefit of subtitles.

“What? Brush my teeth, you’re so bossy!”

Caregivers know it hits straight into the dilemma of an individual’s sense of self and autonomy in the midst of an on-going memory meltdown.

At the dentist last week for Jed’s six-month check-up, we ran into the issue of dental hygiene. I’d warned our dentist on the phone when I made the appointment so she was prepared. What struck me though, was her incredible gentleness as she cleaned his teeth even as she used quite a lot more rigor than usual.

Sitting outside, I felt by turns sadness for what he was going through, guilt for not having implemented the secret sauce for twice daily brushing, and a sense of being beholden to her for her kindness.

“You’re doing good, Mr. Stevenson,” she said. “I’m so proud of you. I know this is hard.”

Jed didn’t complain and then in speaking with us afterwards she said, “Mr. Stevenson, I do need you to brush your teeth twice a day. And your wife, Malissa, is going to get you a special new toothbrush. It will be a lot of fun.”

One new Philips Sonic electric toothbrush plus a special new heavy duty prescription floride toothpaste later, we headed back to the dentist this week for a followup appointment to top off a filling that had come loose.

Sitting in the waiting room, I observed again the kindness the dentist showed Jed.

“Did you use your new Philips Sonic toothbrush today, Mr. Stevenson?”

He didn’t quite respond, and then taking a look inside his mouth said, “ah, it looks as if you did. Very good, Mr. Stevenson. That is wonderful. Keep up the good work.”

Yes, she was speaking to him like a six year old, but her manner had a sweetness, that disarmed his sense of violation at being told what to do.

What I felt was beholden to her. In what can seem like an indifferent world, her tenderness touched me deeply. I tear up now thinking of it. Just calling him Mr. Stevenson gave him an agency that was powerful.

Reflecting on it, I realized that it also gave me the sense that I wasn’t alone.

For further information on dental care for dementia patients, the Alzheimer’s Association has a very good primer, the link is here: Dental Care.

Aging Care also has some good suggestions: Oral Care Tips for Dementia Caregivers.

As always, please feel free to contact me if you need help with caregiving.