Category Archives: Inspiration & Musings

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

About last night … women boxing

Remembering Dr. Martin Luther King Jr. – January 15, 2023

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!

You’re doing your best

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Vegan Creamed Chick Pea Vegetable Soup with roasted veggie garnish and chopped parsley

When in doubt, cook something.

That’s been my week.

Not writing. Barely researching. Angsting about everything and nothing.

And really. What does “you’re doing your best,” even mean?

This in an email note from a doctor as I reported out the latest of Jed’s symptoms. How he described himself as feeling “whoozy” again and needed to get back to bed. His heart rate hovering around 50 and even dipping a bit below. My doubts on full display, “showing my ass,” so to speak. How helpless I feel. Yes. He’s fine. Nothing we can do until the data from the Zio patch heart monitor he is wearing is accumulated and sent off next week. Then we can tell whether he really does have issues with his sinus rhythm.

All of this as I baked Jed’s “no knead bread” recipe. Starting it the morning before. Measuring the three cups of flour, 1/4 teaspoon of yeast, 1-1/4 teaspoon of salt, and 1-1/2 cups of water to get it started. Mixing it first with a spoon, and then with my hands. Enfolding it, feeling it coalesce, become a coherent bonded whole threading through my fingers, before carefully placing it to rest in a large bowl coated in extra virgin Kalamata olive oil. I think, “only the best for my Jed.”

Tear up thinking about it.

How hard this is.

How with the dough in place and rising across the day into night, Jed, had woken up at around 1:00 AM, unsure of how to go to the bathroom. I had a moment of cognitive dissonance, and then rose up and showed him the way as lovingly as I could with out a hint of judgement or despair or anything really. Knowing how he was entrusting me just in asking the question. Not wanting to appear “bossy,” his favorite term for me of late. Only to get the engine started a bit. Like cranking up an old Model T Ford car. Once the motor’s on it’s good to go, just needing the bit of a start.

Greek Fassoulakia with potatoes and kalamata olives

Lunch that day had been Greek fassoulakia: Green beans, potatoes, and kalamata olives in a tomato sauce with onions, garlic, basil, lemon juice, and a touch of cinnamon.

Comfort food for me. Shades of my 18-year-old self practically inhaling it off the plate whenever Nick’s mother Kalliope made if for us on the island of Rhodes in 1972.

Something yummy for Jed, as I’d taken him to Rhodes a couple of times, once in 1998, and once with Izzi in 2000–and where she started walking at 10-1/2 months. Ordered the dish practically every time we had lunch at a Taverna. Would mash it up a bit for her as we watched her smiling in delight with tomato sauce dripping down her mouth.

Later in the day, Jed was more of himself: Playful, funny, unworried about not having a clue. Enjoying the fresh soup I’d made in the morning to go along with the bread. Me dissecting the spicing (too much of the cloves) — him feasting.

“Hmmm,” he says, “the best I ever ate.”

And so it goes.

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Bradycardia (low heart rate) can cause confusion, dizziness and other symptoms, which can otherwise be challenging for a caregiver to interpret. This was only picked up on an ER visit as an incidental finding–and we still do not know if it, in fact, is the cause of Jed’s added confusion in the morning.

In researching the subject, I found a paper noting that bradycardia seems to have more frequency for frontotemporal dementia (FTD) patients with the behavioral variant, and thus something, FTD caregivers should be cognizant of.

For further information on bradycardia here are some resources (click on the item to open the link in a new tab):

Bradycardia in Frontomemporal Dementia

Strong evidence to links irregular heart rhythms to dementia

Bradycardia: Slow Heart Rate

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.

Damages

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Damages reappear as unbidden apparitions

Big rivulets of unsealed fissures

Felt as a dull ache

A knowing sense of debilitation

Laced with unnamable remembrances.

I wonder about it

About how pain returns

How it comes due

The recompense

That and the vigorish

The payments on account

The little bits of soul separated in the rush to move forward

Hurriedly refusing the calls to look back

The map points

The cavalcade

How intransigence is the loss of everything.

Of caregiving and caregivers

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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.

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

Girl Alone

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Girl on the block alone.

One friend.

One brother.

I want to be a superhero. Really, ever since I was seven.

Share it with Milton Spivey. Trade stories.

He is cool because his letter to the editor is published in an issue of Spiderman.

Girl alone on 12th Street.

I love to read. To understand the world at large.

I sneak passages in my mother’s paperback copy of William L. Shirer’s “The Rise and Fall of the Third Reich.” The pages thin, already starting to yellow, with that old paperback smell even though it is fairly new.

Love that I know his full name. The importance the author places on it.

I read about concentration camps and the number of Jews murdered from this and that European country. Some in the hundreds of thousands. Some in the millions. Going back to the table listing the number of deaths over and over again.

She keeps hiding the book and I keep finding it.

She needn’t worry. I already know the world is mad. Have known since I was five and learned about Hiroshima and Nagasaki.

I am forever scorched.

Trying to imagine my superhero self, going back in time to smash the crematoria. To get the Jews out from behind the German lines. To make the shadows of the disappeared in the ruins of Japan come back to life again.

Girl alone.

I listen to Mom’s Coltrane, and my Chopin, and my Songs of the Negev on the portable record player Grandma gave me.

“I could be a soldier there,” I think, “the equal to everyone.”

Know that of anyone I know in the world, it is Grandma who would understand.

Girl alone. Springtime.

I like the silence of my thoughts. The feel of my hair in a plait down my back.

My beige jeans.

Worn-out Hush Puppies with my toes starting to poke out.

Myself. Nine years old.

Going somewhere as swift as the wind.

At the dentist

The moments I’m not prepared for

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Mount Everest, Photo credit: The Tribune, India

Caregiving for a person who is losing themselves is the Mount Everest of experiences. One puts one foot in front of the other for some sort of forward momentum, but without really looking too far ahead. To do so is to risk one’s own break down and that plaintive, wistful, despairing question, “how can I do this?”.

As I ponder it all, I’m realizing the moments I’m not prepared for seems to be a growing list. This morning, Jed asked, “Who are you?” and I really didn’t know where to go from there.

I smiled.

Sweetly.

In the moment.

Said, “I am Malissa,” paused and added “we are married.”

Jed said, “I don’t remember things.”

He then smiled and said, “well Sheila, how are you!”

Now that was typical Jed. A moment of clarity in his fog of a mind, covering his sense of embarrassment at not being on top of things and making a joke of it all. We carried on with the Sheila joke for a bit before focusing on breakfast: a toasted slice of leftover cranberry walnut bread, our Christmas morning family tradition for years. He said, “hmmm, this tastes good, where did you get it?”

I explained, the Christmas morning stuff and he looked at me with wide eyes and a big smile and said, “you made this? It’s delicious.”

And so it went. Through breakfast. Through discussions about haircuts. Showering. the scabs on his arms and upper body from his newly acquired OCD habit of scratching and picking.

And no, none of it is ever something I thought of. I mean, really, who does? At our age, one thinks of the bad luck of cancers or heart aliments, diabetes or COPD from all the smoking we did as kids, but something that slowly erodes one’s ability to think or even recognize or put words to the people they know and love? No. Believe me. You don’t think of it. Not even if it is all around you, never for your own spouse or loved one.

As I write this, we’ve conquered the confusion of waking up and not being able to understand the most basic of things. Slowly though, I am watching as cognition returns. Yes. Morning meds and vitamins. A shower (no fight about it either), shaving using his electric razor, putting on spanking new duds from his Christmas haul. A pet to our kitty Mimi who is on her last legs from chronic liver failure. Sweet words to me about how much he loves me. Appreciates me. More talk about getting a haircut. And then an actual walk, our first in almost two weeks since he accompanied me to the Post Office to pick up stamps.

All went well, but the haircut didn’t happen. We lost the window, too soon when he turned from our apartment house entry way and too late when we passed it on the way home.

Walks are in fact, really tiring both physically and mentally, even our very short ones. He becomes overstimulated by the sights and sounds. People on the street. Noise. Shops. And today from wandering around the first floor of Barnes and Noble, the colors of the fruit stand, the plants and trees lining the brownstones on Clinton Street. And needing to stop as well. The sweat beading on his forehead, needing to catch his breath, this from the man who has circumnavigated Manhattan at night in a kayak by himself and written about it for a Weekend Warrior column in the NY Times.

Once upstairs, he remembered about the haircut. “Maybe tomorrow,” he said. He had to go to bed, to drift for a while in the darkened room with drawn curtains and to eventually asleep.

Meanwhile my day. Yay to getting my delivery of Covid home tests after a pre-Christmas frantic search of medical supply companies on the internet. Yes to laundry, churning its way through rinse cycles and the dryer. Yes to a quick text touchpoint with my daughter. Yes to realizing just how overwhelmed I feel — and to the bits of tears in my eyes as I blink my way through a minute or two of silent meditation to keep myself together for the next steps of the day.

If yesterday morning was self-care at Gleason’s Gym, today, through chores (garbage out, laundry, vacuuming), I’m giving myself the sense of order externally. Sure, not spanking clean, but at least with some of the holiday disorder at bay.

And then I locate myself again. Clear my mind, breathe, inhale, exhale, and start it again. This is the way.

****

For more information about dementia and caregiving resources here are some helpful links in NYC as well as two of the main national organizations. And of course, always feel free to contact me.

CaringKind is a caregiver organization in NYC with remarkable resources, courses, caregiver groups, and other information. Link here: Caring Kind.

NYU Family Support Center has programs for caregivers to include a fully array of “zoom” meetings that range from looking at art with museum curators to music and caregiver “KaffeeKlastch” meetings. Link here: NYU Family Support Center.

Alzheimer’s Association, website for information and resources for this disease. Link here: Alzheimer’s Association.

The Association for Frontotemperal Degeneration, website for information and resources for this disease. Link here: AFTD

Getting it wrong to get it right

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December roses, Juneteenth Walk, Cadman Plaza Park, Brooklyn

I’ve been having that sort of week.

Really from last week till now. Forgetting to put stamps on letters. Referring to the wrong person in an email. Fretting as Izzi waits for another round of Covid tests because more of her co-workers have tested positive.

And sleep has been an on again, off again thing too. Drifting into a nap in front of the TV for 40 minutes during the boring parts of a boxing undercard and then not falling asleep till 4:30 in the morning.

Last night was so ridiculous.

I just gave up at about 3:00 AM, showered, and began making the dough for the cream cheese rugelach with apricot jam and walnuts I’m baking as part of my holiday array of goodies. Dough made and put into the refrigerator to rest, I didn’t fall sleep again till around 5:30 AM. I’m just chocking last night up to the winter solstice, with the notion that my body just wanted to get a jump start on the the longer days to come.

But I also know something else is going on. That the working from up in my chest rather than the sense of being rooted onto the earth is the sure knowledge that things are off kilter in my sense of being.

Scratching it further I’m having to ask myself what underlies it all.

Holidays?

The Omicron-variant doubling the cases of Covid in NYC everyday?

Line for Covid testing, Astoria, December 22, 2021 (Photo Credit: Izzi Stevenson)

Jed’s forgetting who Izzi was last week?

Cheng Man-ching

Not putting in the time to take care of the things I’ve committed to? I mean really, I have to ask myself, why is it I haven’t actually performed the Cheng Man-ching 37-move Tai Chi form since my last zoom class ended a few weeks ago?

It may remain a mystery of sorts and not having a particular insight into things can be something we just shrug our shoulders about and let go from time to time.

But I tried the exercise on Monday without even realizing it. Somewhere into my tenth round at Gleason’s Gym I let the flow of things unfold as I threw jabs and straight rights at the double-end bag. Somewhere around the 14th round I realized I did not feel constricted by striving for perfection. I was in the moment. Up on my toes. Flicking punches as I moved from side to side.

Just doing that reminded me that not every action has to be a home run. After all, a baseball player with a 350 batting average is considered at the top of the game. If a 1,000 is perfect … well, you get what I mean.

So that’s been my message to myself. I don’t always have to swing for the fences. And if I get it wrong, well, make up for it. Have the sense to sink down a little lower next time. Feel the power of the moment not as that huge mountain to climb, but as part of the flow.

Sometimes just getting a few hours of something, however fleeting, can be enough. And yeah, smell the roses.

Caregiving and the holidays …

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For many Americans, the period from Thanksgiving through the New Year is fraught with tensions and anxieties, coupled with moments of exuberance and joy. if you are a caregiver, it can add yet another level of complexity in the ever evolving landscape of illness whether physical or lodged in the recesses of the brain.

I will say things have been fairly smooth so far and actually seemingly less fraught than prior years because the fact is so much of our lives is now lived in the moment. After all, when one’s loved one can’t really remember that tomorrow’s Thanksgiving, or even what Thanksgiving is, the celebration gets quite easy. So my daughter and I set it up such that we’d spend lunch with my sister and other members of our family, and afterwards came home to celebrate “Thanksgiving” with Jed. It was fairly simple, consisting of his favorite roasted veggies, a lovely dressing, fresh orange cranberry relish plus a yummy French Apple Cake and voila, we were done. No fuss, no muss. And no hurt feelings because Izzi and I had spent part of the day with my sister.

Our six-week run usually consists of Thanksgiving, the anniversary of when Jed and I met, his birthday, Hanukkah, Christmas, and New Year’s.As it happened December 6th marked 25 years since Jed and I first got together.

I admit to sadness at the fact that he didn’t really understand it, but did enjoy the pizza I brought in and otherwise marked it in my own way.

And no. No stroll through Tribeca to Puffy’s on Hudson and Harrison where we met, or any particular reminiscence, though he did recall that I’d gone there with two of my oldest friends. Still, it remains wistful. Speaking of another place and time where our senses had felt so heightened and together.

His birthday comes up next … which will also be low key no doubt. Yes to family cake and a visit from Izzi, plus a few presents, but it doesn’t really register, except as a big surprise each time I bring it up.

As for the rest … well, Hanukkah has come and gone, along with a wonderful visit from Jed’s oldest friend. And after Jed’s birthday, we’ll have Christmas, and maybe even a small tree because he seems to associate it, and then lovely chocolate truffles and a split of champaign for New Year’s Eve.

The lesson of it all to myself is to remain in the moment.

To stay calm.

To give myself the self care I need to feel contained whether that means ensuring I get to Gleason’s Gym to box or to take an hour to sit in the cafe across the street tarrying over a cappuccino as I write in my journal.

And yes, I’m making the events as special as I can, without overtaxing myself or attaching to the idea that it will remain as “that time at Christmas when …” because, the fact is he won’t particularly remember.

The best I can ask for is see to his sense of happiness from moment to moment. And really, what better gift is there than that.

And please, if you are caring for a loved one … know that you are not alone and can always, always reach out.

RT @TalkinFight: Tracy Byrd: The First of Many twitter.com/i/broadcasts/1… 7 hours ago
RT @nhbnews: Chaos at Russian-led IBA #boxing event @angryafroradio @Girlboxingnow @glensharp33 @Deoliver47 @ThatAlvaJohnson @AuroraO83 @ap… 9 hours ago
RT @Maurice42797448: @Girlboxingnow That’s a great story about them, because I saw a couple of their fights! 🥊🥊 11 hours ago
RT @Deoliver47: @SostreInstitute Young Lords Party newspaper 1971 - cover story on Martin Sostre - prisoner of war https://t.co/6WCni6Fvbh 14 hours ago
RT @DeirdreLegacy: Hi there, The message was sent to our statue committee Sunday Night by Deirdre and read to her by the chairman Ciaran… 17 hours ago

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