Tag Archives: Caregiving

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.

Caregiving and the holidays …

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.