Tag Archives: dementia care

You’re doing your best

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

When in doubt, cook something.

That’s been my week.

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

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

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

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

Tear up thinking about it.

How hard this is.

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

Greek Fassoulakia with potatoes and kalamata olives

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

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

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

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

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

And so it goes.

====

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

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

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

Bradycardia in Frontomemporal Dementia

Strong evidence to links irregular heart rhythms to dementia

Bradycardia: Slow Heart Rate

 

 

Cat dancing through the week …

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.

 

 

 

 

 

Of caregiving and caregivers

I will admit the notion of bringing in a companion / caregiver had been and still is daunting. As seemingly social as I may be, the die-hard New Yorker in me is loathe with a capital “L” to expose myself. After all, generations of New Yorkers have lived in tiny overstuffed apartments with doors that never open more than a few inches when someone knocks on the door. Why else constantly live life in cafes, bars, and restaurants? Right? We can just as easily have “at-home” dinner parties, but seem to prefer keeping our real selves, messy desks, unmade beds, and all, to our selves. It’s how we roll, and how we live, and our preferred state with out prying eyes and the “tsk, tsk, tsk” of disapproval. Of course, once one has kids, the calculus changes a bit. The living room, kitchen and bathroom do become public as well as any rooms where kids sleep and play. But one’s own bedroom remains a sanctum free of intrusion.

But really, I am indulging in a tangent, when it’s something closer to my own sense of failure at not being the end-all of caregivers. Admittedly I am much better at it than my housekeeping, but the nagging sense that I am not doing enough does punch through. And yes. It’s ridiculous, but who ever said that being human is anything other than a silly state of affairs.

The real truth is, at this stage of unrelenting progression, having a companion caregiver to augment care is absolutely the right call. One cannot be all things and the stimulation provided by another is extremely helpful. Sure, routine is good and important, but so is changing things up a bit. Forcing conversation. Another view of the world. And a new paradigm of routine that includes the companionship of others on a regular basis.

Having crossed that divide some months ago, I’ve come to depend upon the twice-weekly time Jed spends with his companion caregiver. As much for him as for myself, it gives me some relief and the chance to hang the “gone fishing” sign for a few hours.

What I hadn’t prepared for is what happens when that is disrupted whether through illness or other changes. In our case, our caregiver became ill with COVID. She is okay, but was out for three weeks. That change, aside from worrying about her health, also meant that Jed’s world became confused — and truthfully, it set him back a bit.

After my day or two of self-recrimination (hey, see the human thing above), I started reaching out to find some alternates. That in itself has been daunting, but I have been been meeting some fascinating people along this new journey of discovery: the remarkable world of New Yorkers interested in providing friendship to a challenged person.

I’m still talking to folks and setting up meetings to see if things will work out, but what it’s shown me is that in opening up one’s self and yep, even one’s home, bits of magic can form.

Jed’s illness will continue to progress as will his need for care, but what I am finding is that in trusting myself enough to trust others, the caregiving I provide is all the better for it.

 

 

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.

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.

 

 

 

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 …

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.