Monthly Archives: December 2021

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

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.

Boxing Saturdays

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Double end bag, Gleason's GymI admit to a certain inconsistency when it comes to my boxing training at Gleason’s Gym. Most weeks I am there two days a week, trying for Monday and Thursday mornings, but this week, as with several other weeks this Fall, days slipped away from me. And so … I found myself at the gym on a Saturday morning for the first time in months.

For many years, Saturdays were my mainstay of boxing. I’d drop my daughter off at her Aikido dojo for her three hour class and then make the quick dash to Gleason’s to train before turning back around to make the pickup.

Sparring at Gleason's GymThose were sacrosanct hours. Gleason’s was on Front Street then, the space encrusted with decades of sweat, grime, and hard work, and yet still cavernous.

Getting there by 9:30, my trainer, Lennox Blackmoore and I had our standing date to spar. We’d grab the little ring which remained pretty much unused at that time of the morning, and became so much “our” space, folks who thought to use it would immediately vacate when they saw us gear up.

It was a lot of fun.

Fun in learning the intricacies of the game. How to feint. How to double jab over the guard followed by an overhand right. How to throw a quick jab to the body when Lennox tried to trick me by switching to a south paw stance. Oh, and how to take a punch, which was way too often because I never could get the hang of slipping well or knowing when to put on my ear muffs.

Saturdays also had a lot of camaraderie. Sure there were pro fighters, but there were a lot of folks like me. In love with the sport and with the sense of boxing as a family. And so we would nod and acknowledge each other with waves, and “hi ya’ doing champ,” fist bumps, and mostly a lot of acknowledgements of the work being done. Of progress being made. Of dedication. Of the process of perfecting the lexicon of the sport as both science and art.

Next month will mark twenty-five years since I first started boxing at Gleason’s Gym. I trained with Johnny Grinage then–about as old school a trainer as one could get. We bonded over our mutual love of bebop, and I didn’t even mind when he’d tell me the same Miles Davis or Wynton Kelly story for the umpteenth time. When it came to boxing training, however, it wore out pretty quickly, so after about 8 years of on and off training, I switched to Lennox.

Lennox Blackmoore, Trainer, Gleason's GymI feel kind of proud of the fact that Lennox and I are still at it.  We haven’t sparred since before Covid, but have talked about restarting. After the switch to Water Street, Lennox even got up at the unthinkable hour of 5:00 in the morning (or frankly, never went to sleep), to train me at 6:30, before I went to work. Now that I’m retired, we tend to meet up some time between 9:30 and 10:00 and have not yet gotten back to our pre-covid three day a week schedule.

Neither of us is young, or as spry, but the fun never stops, and there’s always Don Saxby, another mainstay cheer leader of my old Saturday mornings to keep me sharp on my skills when I need a different view of the game,.

Caregiving and the holidays …

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Greek Kourembiedes CookiesFor 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.  Thanksgiving 2021It 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.Boxing at Gleason's Gym

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.