Tag Archives: Caregiving

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!

 

 

 

Cat dancing through the week …

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

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

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

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.

In the pocket …

Between Covid, cold weather, and the vicissitudes of life, I admit to a rather scattered boxing training schedule since the beginning of the year. Last week, though, I was determined to get back to two days a week with a view towards three as soon as I feel able.

Unstructured training has its place I guess, but for me it’s meant a backward slide when it comes to stamina with a capital “S.”  The twinges in my right shoulder by about my 10th round also reminded me that such breaks can effect muscles and tendons as well. And in case you were wondering, nope, I didn’t pay particular attention to stretching either!

Hmm. Note to self. STRETCH!

Still, tiredness and heavy breathing aside, it felt great to dance around the ring when I shadowboxed, and by the third round on the pads with my trainer, Lennox Blackmoore, I felt in the pocket.

“Good job,” he said with a laugh and a mock wince, when I executed a straight right, as directed to his body, followed by a left.

He also had me working on my up-jab, overhand right combinations, with a sneaky left hook or upper cut thrown in at the end.

On the double-end bag, twinges to the right shoulder aside, I worked on feints and combinations, and the accompanying foot work that had me taking steps first one way and then the other, before executing right hand leads or doubled up jabs followed by the straight right.

Saving the best for last, I completed four rounds on the speed bag for the first time in a couple of months.

Always, my favorite way to finish training, it felt as if I was back hanging with an old friend, alternating my standard da-da-da-da-da-da speed bag drills with thirty second spurts of shots to the bag in combinations.

Given where we are in the world, I also felt humbled by being in the gym at all, as if I were a stand-in for all the people whose circumstance precludes such luxuries.

I was in my home away from home. Practicing what I love. Being in the moment with it. Feeling so much that just by being there I was doing honor to my boxing brothers and sisters in harm’s way in Ukraine. And I felt a gathering in. A welling of love and support as if the energy itself would heal the parts of my body in pain and in turn across the world. Magical thinking to be sure, but there’s a part of me that wants to believe.

 

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.

 

 

 

Where does time go

Getting ready to speak about procurement opportunities for M/WBEs and small business owners at the New York Build 2020 Expo, March 3, 2020, Javits Center,

The one year anniversary of my retirement is coming up at the end of February. Not that I’m *that* old, but it was time to hang up my shingle so to speak from working for the City of New York in a variety of administrative procurement leadership roles. What you say? Procurement? A civil servant?  I know. Perhaps a bit incongruous from my boxing and writing life, but, hey, bills had to be paid, and I have to say, I never felt prouder of any profession than my years with the City.

With the retirement anniversary looming, I’m trying to figure out what exactly this year has wrought, other than figuring out pension filings, social security, medicare, and all of the other pensioner-life experiences that have been by turns frustrating and surprisingly easy.

I admit that I didn’t have a plan, per se. It was just time to move on and of course, Jed’s struggles were certainly foremost in my mind. The pandemic also played a role. As I ponder its meaning, I own to having been caught up in the sociological phenomenon of the The Great Resignation.

Looking at time through the prism of retirement has brought me to the realization that I live mostly outside of industrial constructs of time. No. I don’t need to get up at 6:15 AM in the morning for an 8:00 AM start to the day. Or go to bed by 11:00 PM. Or live by endless meetings on a calendar, or deadline dates for this or that report.

Time is my own. My own waking and napping and sleeping. And much as a spoon embracing another, I meld myself to Jed’s time. To having breakfast, and pills out to swallow, and coffee made. But even in that, there is no have-to. Just that it’s there within a window that is morning, as distinguished from later in the day.

Feeding the cat is kind of the same. Our new guy, Sugar Ray, waits patiently. Just needs my attention once I stroll into the kitchen area to set up his morning can of something tasty. And of course some pets and a bit of play, but no alarm needed.

I think it was late June before I grasped that I didn’t have to do anything. That my rigid plans for execution of this or that set of chores was no longer necessary. Rather, I could sit with a coffee and watch the plants. Watch the way the clouds swirled to the left of the Brooklyn Municipal Building (The Ruth Bader Ginsburg Building I should say) as I cock my head to the right looking out the window.

And then the writing started to come.

I’d started Journaling on Saturday, February 27th. By summer it was pretty much every day in some form or another. I journaled, wrote haikus, posts for the blog.

As the summer moved forward, little bits of real writing started to come through.

That practice has nods to time in that I try to set aside segments of the day to write, but even with self-imposed deadlines, there is an ebb and flow to it that seems outside of the world of work. The impositions that trading time and energy for the cold hard reality of a pay check can bring. Those have-to moments, when perhaps you don’t have your heart in it, but have-to anyway. Face getting reprimanded in one form or another for not adhering to the schedule of nine-to-five work and all of its incumbent responsibilities.

I see that most clearly in the changes to relationship. Where folks who formerly worked for me can now be friends. How the static of “boss” has taken some time to unravel. Almost as if we have been collectively taking a hatchet to the fences around us, as so many booby traps to our communicating in any real or meaningful way. This year has brought me the understanding that I can freely roam in my own thoughts and on my own tangents without owing anyone anything. Yes. I get up in the morning, but the clock is internal. And while my writing projects, and such things as the WAAR Room podcast have certain time constraints, each moment seems ripe with possibilities.

My life has become a series of wonderful options and opportunities, and for that I am truly blessed.

Now what?

Okay. So Covid done and dusted. More or less. Still some dregs left. Like the leavings of coffee. Unpalatable but there to be dealt with.

Coming out of my cave, I walked into the cold temperatures of mid-January. Hurriedly paying monthly bills before due dates (those that aren’t automatically deducted), futzing with the plants that needed attending to, making a Trader Joe’s run, plus the hunt for more cans of grilled Fancy Feast cat food — a challenge as cat food seems to on the list of supply chain problem children.

And me. Still no gym (waiting for the dregs to leave). Trying to catch up on writing projects, which is slow going. Figuring out sleep patterns. Avoiding the heavy duty vacuuming that needs to be done. Chores and more chores interspersed with the things that keep me going.

Waking up to find that its January 13th is also to realize I missed the boat on New Year’s and things like New Year’s resolutions.

That was always such a thing. The short list of must-dos for the following year or at any rate, for the month of January into February, when it all felt so fresh.

List items such as: I will write every morning for 30 minutes, or I will practice yoga from 5:30 AM – 6:00 AM for 40 days, kind of my own personal Lent, if I were actually Catholic, but more to the point, liking the ring to the 40 days part of it. 

The truth is I don’t have the heart for it other than to say I want to wake up without worrying.

And maybe that’s a bit whiny. In fact it is. No mistaking it because I’m living a remarkable life. And what worries do I really have? Sure, Jed’s illness, but we have it covered, more or less. We have a lovely place to live. Food on the table. Medical folks who respond when I call. Pensions and health care and social security and a bit in the bank. Isn’t that enough?

So If I land on anything, it’s to say find joy. Live joy. Be joyful. The alternative is like the dregs … nothing we should have to use to define who and what we are.

Just joy.

 

 

 

 

 

My Covid life …

Pandemic Lockdown, Harry Chapin Park, Brooklyn, NY, March 28, 2020

I first read about the novel corona virus beleaguering Wuhan, China in January 2020. Not to say I was prescient or anything, but I did put in my first N-95 mask order on the 26th of January. Even then they were hard to come by and mostly sold out. So no, I wasn’t the only one that saw the tsunami starting to make its way ashore.

I was just at the forefront of a whole lot of people wanting to keep themselves and their families safe.

By mid-February, in my former role as a NYC agency official, I was in daily COOP meetings, that’s continuity of operations to the uninitiated who did not live or work by acronym.

I’ll add, even before the world first heard of Covid-19, I was the hand-sanitizer “Queen.” My particular division had older staff, many of whom were susceptible to URIs (that’s upper respiratory infections), so we’d instituted an “informal” rule. Everyone had to use hand sanitizer and “Lysol” the crap out of their desks at the end of the day to keep the colds at bay.

Me, I’d taken to wiping down tables, chairs, door handles and the like at the beginning and end of each day, and after each meeting.

The illness though had its own time table no matter our planning, which by March, was just a zero sum game of catch up as the trickle of covid cases started to rise to a crescendo, and we dutifully followed through on the plans to stagger work, et al., especially when our own folks started to get sick before finally shutting down entirely.

I also learned to my chagrin that in one meeting in Mid-March, I had two covid-positive colleagues out of five seated around my cramped meeting table for thirty minutes with the door closed.  But I’d dutifully sprayed and wiped down before an after.

By then, the daily 4:00 PM COOP meetings were by phone and had evolved to a Pandemic Task Force. Not to mention the unexplained absences that were whispered about, with one of our number hospitalized for a few days.

Okay, so we all know the rest. The P-word, pandemic, my beloved New York City a raging inferno of sickness and death. All of us at home, locked-down, trying to work and keep our souls together as the sirens punctuated our days and nights as so many desperate cries of despair.

On my chat groups, the friends groups and family ones, we consoled each as we raged, fearfully counting our numbers to keep us safe, and so filled with dread at the thought that one of us would become ill, while recounting in hushed tones those who had died … and on and on through political upheaval, Black Live Matter rallies and marches; the continued, unrelenting sickness, and all the rest.

A day shy of 23 months from placing my first mask order, I tested positive for Covid-19 on an Abbott BinexNOW home test.

That was 23 months of anxiety, fear, desperately scrambling for vaccinations for me and Jed, more scrambling for booster shots, online purchases of masks and more masks, of gloves and more gloves, of hand sanitizer, even making my own at one point with alcohol prep and aloe vera, Clorox bleach spray, Lysol and equivalent wipes, and all the other measures to keep the plague of illness, societal disorder, and wrenching fear at bay.

I was so shocked by the positive result on the stark card, I took it again. A sustained moment of cognitive dissonance. Me, positive? I’m the sanitizer “Queen.” I’m the masked-lady in blue and green and the colors of this or that masks, the cloth ones neatly washed and filtered and replaced with a regularity that was practically obsessive-compulsive in its features. There were weeks and weeks and weeks where I’d be the only person in a mask. On the streets in the summer of 2021 when we NYC denizens felt a bit of hope. Me in the gym, keeping to my quiet corners, learning how to work out and breathe through a mask in the heat, sometimes replacing mid-stream because I’d sweat through it.

Yes. That me. Now sneezing. Taking to my daughter’s room to isolate. The months of thoughtful prep suddenly crashing through with phone calls and frantic cleaning of surfaces, and setting up of supplies in what would be my isolation tank for ten days.

My angel, Izzi, came the next day to take over caregiving duties for her father and to keep me in soup and oatmeal. By that first day (so counted because the day of testing positive is day zero), I was already feeling sick. Sneezing gave way to a sore throat, and by day two a cough, night time fevers, nausea, and a crushing headache. That didn’t abate for several days and at one point I even needed an inhaler in addition to some migraine tablets for the headache, and steady doses of Mucinex to keep the coughing at bay.

My internist had said since I’d had three jabs it was highly unlikely that I’d need hospitalization or even anti-virals as long as my fever didn’t spike past 102F degrees or my pulse oximeter readings did not go below 92.

In that I was lucky. I’d become ill with the Omicron-variant raging across the world as a wild fire of sudden illness.

My fever never went above 100F, and my infection stayed in my upper respiratory system which meant my breathes ranged from a healthy 95-99 most of the time.

But I was sick. And now at day 12 still have sniffles and the sense that science and a steady dose of exercise saw me through the worst.

Our stringent protocols also kept Jed and Izzi safe as they continue to test negative.

Talking via FaceTime from the room next door.

Jed’s confusion as to where I was and who we all were patiently explained several times a day.

Bullets to our hearts averted.

Still …

The moments I’m not prepared for

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

December Roses, Juneteenth Walk, Cadman Plaza Park, Brooklyn

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.