Category Archives: Inspiration & Musings

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.

Getting sick … the return

Sick bedI have been laid out flat with laryngitis, fever, a rib flailing cough, and all the misery of a GERD flare. Not to mention sore muscles from nights on the couch because my wracking cough shatters the calm of my husband’s sleep and sense of well being.

Okay. Enough with the complaining, right? I do, after all, mostly have my voice back, and, thanks to a plethora of drugs to include an inhaler, cough medicine (three tries till I could find the one that worked–Mucinex, the honey flavored one), antihistamines, massive doses of PPIs to stop the stomach acid, Tylenol for the first few days to stop the razor blades in my throat feeling, cough drops, which I stopped, because they exacerbated the GERD/Laryngopharyngeal Reflux Disease, and my lovely daughter’s TLC who came to stay for a couple of days, ostensibly to ensure that husband was okay, but worriedly keeping an eye on me, having already sent a humidifier via Amazon prime. Meanwhile, she’d slipped and fell and cracked the radial head of her elbow the night of her 22nd birthday, the same day I came down with the dreaded “L”.

My what a bunch my family is.

So now that I am taking a reasonably deep breath without a hacking exhale, I’m trying to put some perspective to all of this, admittedly a bit drugged up from the steroid in the inhaler and whatever cocktail of ingredients is in the cough medicine.

Still. In the throes of sudden vulnerability. Of coughing so hard I couldn’t breathe. Of fearing Covid for the first couple of days, even though I’d just had the third booster and knew the symptoms were for a different sort of virus. Of realizing that life is so fleeting and that I am so unprepared for its end. I mean, yes. I have wills and powers of attorney and that sort of stuff, but everything else is so messy and in the middle. It’s like my desk. I know where things are, but looking at it from an outsiders point of view. Where to start? How to fathom it all? How could I leave my daughter and my husband with this? And in particular, my husband? My beautiful Jed with short term memory so fleeting that he asks the same question 4-5 times before he figures out from a cue on my face that he’d asked it already.

A caregiver’s dilemma is always one of balancing the self with the non-self.

Self says, “hey, it’s my life, I do whatever I want. So what if there are unpaid bills? Or if I didn’t send in the signatures for the new account? Or even the latest round of retirement forms?”

Non-self doesn’t even say. Non-self is there soundlessly. A support bed of soft puffy clouds. A hand guiding without ever telling. A hand that gives full agency to the other. Allows them to find their way to the shower on their own to scrub the days of not showering off their body.  And doesn’t worry. Doesn’t feel wrecked inside at week two of not getting out of his pajamas.

Purple bootsOkay so I am in the throes of a lot of mixed stuff here. Me with laryngitis and me as a caregiver and me as a recently retired person trying to find her way and me as a 67 year old facing the fact that I don’t bounce back as quickly as I used to and me as a lot of other things I haven’t even figured out yet.

Meanwhile, I bought a pair of purple boots and are they ever cute.

Reflecting the positive

Gleason’s Gym, September 23, 2021


I admit it. Not every day is stellar.

I’d walked to the gym at my usual clip, feeling as if I’d work through my 16 rounds or so with reasonable ease, already planning out the things I wanted to work on: Moving with the jab, followed by a sidestep for a quick right to the body, left hook, straight right combination, before moving on to the next jab. As I shadow boxed, that worked for about a minute of the first round before I started to slow down.

“One of those mornings,” I thought, as I took the pace down a notch.

And yes, Gleason’s Gym was still fairly summer-hot and very, very humid, but today, the stickiness in the air seemed to be getting to me more than usual.

By the fourth round I found I needed to slow it down even more. Still feeling that I could make it work I boxed four progressively slower rounds on the heavy bag and one last attempt at a fifth, making my total nine for the day.  And yep, that was it. I knew I had to call it quits. This was not my morning.

In trying to analyze it, I realized I was still a bit unnerved by news I’d received the night before. Someone I am close to suffered a TIA* – a mini-stroke that left her unable to speak in the middle of a zoom call. She was pretty much back to her self within 30 minutes, but on the advise of her doctor, went to the Emergency Room and was admitted overnight for monitoring and further tests. I had just seen her the week before our first true outing since before the pandemic, so it all came as a surprise. At 76, she is robust, but the reality is at a certain point, things just happen.

As I walked back home, still slow, slow enough that my walk wasn’t even registering as “exercise” on my iWatch, I reflected on it all. I realized that knowing when to pull out was just as important as pushing forward. That there is a moment when the positive of exercise or any of our actions gives way to something that may be less than brilliant. That knowing one’s limits is another aspect of self-care.

So … yes, reflecting the positive sometimes means listening to your body when it says, you are done working out for the day. Time to go home.

There’s always tomorrow.

 

*TIA: A transient ischemic attack (TIA) is a temporary period of symptoms similar to those of a stroke. A TIA usually lasts only a few minutes and doesn’t cause permanent damage. Often called a ministroke, a transient ischemic attack may be a warning of a future stroke and an opportunity to prevent it. (Mayo Clinic)

forgiveness ….

Tonight is Kol Nidre, so named as it is the old Aramaic prayer Jews around the world will sing annulling all oaths and vows made before G-d at the start of the Day of Atonement, or Yom Kippur.

If that felt like a lot, believe me, it is a lot. And hearing it sung feels as heart wrenching as it implies as it signifies the beginning of 25+ hours of prayer, self-reflection and fasting–along with entreaties to G-d and oneself to be written into the “good” book of life for the coming year.

This morning, like an ersatz acolyte in training, I figured I would use my time boxing at Gleason’s Gym to clear out my mind for the mental and emotional gymnastics that Yom Kippur would bring.

Meanwhile it was hot, hot, hot and humid, and as I went through my first four rounds of shadow boxing, I became bathed not only in my exertions, but a less than charitable feeling as I angled for the portion of the ring underneath the overhead fan against all comers.

“Oy,” I realized, “Yet another thing to seek forgiveness for.”

Still, by the time I was on the focus pads with my trainer Lennox Blackmoore, I was indeed more in the moment, less concerned with the fan, and working on the exact angle of my head as I dipped under to bob and weave among the other technical corrections I was seeking to make as we trained. I even felt like I could go for a fifth round of pads, and although I gulped sips of water between rounds, and I was just short of panting, whatever it was I was aiming for in the “clear one’s mind department” was starting to kick in.

But that doesn’t mean I was really any closer to getting the whole forgiveness thing.

Sure, I can forgive another their “trespasses” and mostly do. I work hard at that and do bear it in mind not to attach to the behavior of others even when it violates me to a degree. But I do bump up against things. The “big” violations that become harder to deal with. Frankly, the closer they are to my core being, the harder those, “I forgive you,” words become. And then I also have to wonder where the line is between not attaching to the behavior of others and the psychological state of disassociation I have entered into from time to time over the course of my lifetime from the deep pains and in some cases emotional trauma those acts have caused.

All of that is difficult and can set-up a spiral of clarity to defensive posturing as a tornado of the soul. But that is not my understanding of what the day is about per se. Rather the purpose is here and now–and has less to do with forgiving others than calling out oneself for the crap we’ve pulled all year, such as how not forgiving another may have set up behavior we need to ask forgiveness for. Subtle. Yes. But that’s the point. It’s all about one’s own behavior.

I hogged the fan in the ring… I was snippy to my husband… I didn’t take my friend’s mother’s call… I removed someone’s laundry from the dryer… I said I was going to make dinner, but binge-watched The Bad Batch instead.

We are talking countless acts that I will have to pound my chest about.

But it will be the deeper reflections that I have to really sort out:  Can I forgive myself for being me? For being less that perfect? For thinking a thing, but not always doing it? For my humanity? And frankly, to my mind, for those acts where I cheated myself?

I am grateful for the chance to renew myself. For taking a day to cleanse as I go forth into whatever the next space will be. Will I be perfect at atoning? No. I can’t even say for certain that I will fast for the full 25+ hours or stay online for all of the prayers. But I do forgive myself that. It’s my intentions that truly matter. My intentions for a good and full year doing all that I can to live my best life.

I will close with this:

To those I have wronged, I ask for forgiveness.

To those I may have helped, I wish I had done more.

To those I neglected to help, I ask for understanding.

To those who helped me, I sincerely thank you …

Gmar chatima tova – May you be inscribed in the book of life for good.

Cantor Josef Rosenblatt singing Kol Nidre from a 1930 recording.