Category: family

Grim milestone

It has just been announced that the United States has reached 500,000 deaths from COVID-19.

A half a million deaths among the 28 million confirmed cases. About 30% of those infected continue to have symptoms for weeks/months.

All of this in about a year’s time.

I had been watching a recording of mass for the first Sunday of Lent. When it finished, I tuned to a news channel. One of the frequent medical contributors, herself a physician, was speaking about the deaths and was struggling to keep from crying. The host noted how appropriate it was to react emotionally, as she herself was.

Such enormous loss. So much suffering. A reminder that, despite medical advances, we are nearing the death toll of the 1918 flu pandemic.

My eyes are filling with tears as I write this, both from the huge losses in our country and the world and from the losses of each one. Just recently added to the list a friend of my sister’s, the father of B’s co-worker, a resident in the apartments of Paco’s senior community.

Even with the vaccines becoming available, there will be many more illnesses and deaths. There will be uncertainty from the new variants’ effects, how long immunity will last after infection or vaccination, how people will behave as recommendations and policies change.

But today is overwhelmingly sad.

Again.

How Does JC’s Mind Work? #1

For months/years, I have threatened/promised to write about how I got to be who I am today and what shaped me along the way. This sporadic series will try to unpack my personal history and influences and, I hope, set people to thinking about their own.

So, I seem to have developed a bad habit of starting a new series here at Top of JC’s Mind at the (almost) worst possible time, as I did when starting JC’s Confessions. (Shameless plug. See link to those posts in my main menu.)

Some readers have expressed interest in knowing how I evolved into the creature I currently am and, particularly during these fraught times, there seems to be new impetus for examining our viewpoints and how we came to hold them, so I thought I’d try to break open some of that for readers.

It seems logical to start with one of the early, fundamental parts of my life, which is that I have rural roots.

And I mean, really rural.

I grew up in a town along the Massachusetts/Vermont border with a population of about 200. We had our own grammar school, grades one through eight when I entered, expanding to kindergarten through eighth when Massachusetts mandated kindergarten when I was in fifth grade or so, housed in three classroom in a WPA-built building that also had the town office, small public library, and a gym that was used by the school and for town meetings and events. There was a small general store that included a post office, which we visited every day to get our mail, but we usually shopped in North Adams, which was twenty miles away and offered more grocery selections at lower prices. We also attended high school in North Adams. It’s where my spouse B and I met, although that is definitely another story.

Although the town was small, it had two distinct sections. Down in “The Bridge” lived the people who worked in the mill, which made specialty paper products, like the wrappers for Necco wafers. They were mostly European immigrant stock, drawn to the area to work in the mill. Up on “The Hill” were the older Yankee stock, some of whom farmed or worked for the town itself, doing roadwork, plowing, etc. They also got Rural Free Delivery of their mail, so they didn’t need to come down to the post office every day, which was a blessing especially in the winter when the unpaved road from The Hill to The Bridge shut down for months and could only be traversed by snowmobile.

My family did not live in either section. Our house was about a mile from The Bridge and was owned by New England Power Company, for whom my father, known here as Paco, worked. It was located near an unmanned hydroelectric station so Paco could reach it quickly if needed. It, an observation stand, and one of the first commercial nuclear power plants in the United States which shared the hydro reservoir with the much older station were our closest neighbors.

Like other small New England towns, everyone knew everyone else and co-operated in running the school and the town. For the most part, people took care of themselves and their families, although everyone kept an eye out for a few townfolks who had special challenges due to age or health.

Then, the mill closed.

A few people re-located to Georgia where the company had another mill, but most lost their jobs and, because the whole area was having similar closures in the manufacturing sector which was the backbone of the economy, many moved away. Certainly, people in my generation moved to other places where they could get work. The population dropped to under a hundred. The school closed when they had only seven students in K-8.

Last August, I was back in the area and wrote this post, which includes some photos from the town and a bit of additional backstory.

So, what does all of this have to do with who I am today?

Growing up in the country gave me an appreciation of the natural world, its beauty, and power. I knew the names of the trees and plants and birds in the woods around our house and knew to respect the bears that sunned themselves on the rocks on the hill opposite our house, the deer that came down to drink from the reservoir, and the porcupines, that, for some reason, liked to chew on our back steps. Especially because Paco worked in hydro, we payed attention to the weather; it was important to know how much water was in the snowpack to handle the spring runoff and how high the winds might be with a storm, in case they threatened the power lines. Also, when it is twenty miles and over a mountain to get to a doctor or store or other services, you have to know how much snow is coming and when.

Like most rural folks, we gardened and bought food from local farmers. We did some of our own canning, including making bread-and-better pickles, and freezing fruits and vegetables. We always had a well-stocked pantry and freezer because you couldn’t easily run to the store if you were out of something. We did most of our cooking and baking from scratch and, like most rural New Englanders, made sure to use everything, like making stock from poultry carcasses. A lot of these skills have come in handy during the pandemic when shopping has been difficult and supply chains unreliable.

Living in such a small town gave me an appreciation of community, of working together to accomplish a task with people who hold a range of opinions and viewpoints, and to always watch out for the needs of our most vulnerable neighbors. While there was seldom overt reference to it, you usually knew what struggles families were facing and were respectful of them.

I admit that I also learned what it feels like to be an outsider. I didn’t live in The Bridge or on The Hill. Because my family was Irish-Italian, instead of just having one ethnic background, I didn’t fit in a category, not that this was a detriment because it averted the “dumb (insert ethnicity here) jokes” and what would now be heard as ethnic slurs from getting lobbed my way. I guess I also learned that people can make divisions among what would look to some observers to be a racially and economically homogeneous group. My grade in grammar school was relatively large. Although we had a couple of people move in and out, our core was four girls. The other three were all cousins who lived on The Hill, so I was destined to be an outsider. This was compounded by some academic decisions of our teachers that sometimes had me working with the grade above ours or on my own. I see this tension between community and solitary pursuits continue to play out in my life over time.

Because of what happened to my town when the mill closed and because I have continued to live in an area with a similar loss of long-standing industries, jobs, and population, I can sympathize with other folks who face similar situations in their towns. In my days of frequent interaction over issues around fracking and other energy/climate issues, I would often run into people with fears of what was happening with jobs in their towns. I could certainly sympathize with the issues, but I think where I differed was that they expected that their children and grandchildren would stay in town and have the same jobs with the same company as they, their parents, and perhaps even their grandparents had had. I, on the other hand, always knew that I would need to leave my town and make a life elsewhere.

Some people growing up in small towns dream of big-city life, but I am not one of them. Large, busy cities are overwhelming for me. The traffic makes me so nervous I don’t even like to look out the windows of the vehicle. I’m uncomfortable being in crowds and feel hemmed in with large buildings adjoining each other on both sides of the street. Still, I like the opportunities for shopping, restaurants, medical services, and cultural activities that a city can provide.

I think that is why I am content with the Binghamton NY area, where I have lived for close to forty years. There are small city opportunities nearby, but also rural landscapes, hills, trees, and wildlife. Given where I grew up, I don’t think of this area as “small town” but that is a matter of perspective. People that grew up in or near New York City talk about Binghamton as though it is “the country” but, for me, an actual small town girl, it’s plenty big.

How about you? Do you see your environment while growing up as impacting your life and decisions now? Comments are always welcome here at Top of JC’s Mind.

Valentine’s Day

The usual greeting for today would be “Happy Valentine’s Day!”

Not this year.

I’m having a difficult time using “happy” as an adjective after the last week.

My family has been struggling with caretaking issues for Paco, complicated by the pandemic. I’ve spent this weekend feeling as though I want to cry, but not quite being able to let myself do it.

It’s the opposite of “happy.”

The United States is also dealing with the first day after the second impeachment trial of our former president. The trial was sobering, as it drove home the extent of death, injury, and damage done during the insurrection and how very close the vice president and members of Congress came to being injured or killed. Somehow, even though more than 67 senators said that DT was responsible for inciting insurrection, only 57 voted to convict falling short of the two-thirds majority needed for conviction. There are likely to be legal repercussions for the former president coming through the judicial system, possibly both federal and state. Meanwhile, he is likely to seek revenge against those Republican members of Congress who voted for impeachment or conviction by advocating that their state parties censure them, by advertising against them, and by funding primary opponents.

Let me be clear that even if DT had been found guilty in the Senate trial, it would not have been an occasion of happiness. It is impossible to feel happy in the face of so much suffering, pain, and fear.

I am trying to find comfort in the message of Valentine’s Day that love is strong, enduring, and the most important aspect of our lives.

May it be so.

May it overcome our present situation.

Sisters poem

The Ekphrastic Review has a regular series of Ekphrastic Writing Challenges, in which they post a piece of visual art and invite writers to respond to it. I have had several poems published in this way.

Here is a link to the artwork and response pieces for the most recent challenge, “The Two Sisters” by Théodore Chassériau (France) 1843. Among them is a poem by Kyle Laws, fellow Boiler House Poets Collective member and ekphrastic writer extraordinaire!

My piece was not chosen in this go-round, but I thought I’d share it here. Enjoy!

Sisters

Is it the matching outfits
that proclaim sisterhood –
my sisters and I in pale

yellow with coordinating
hats and gloves
for Easter mass –

my daughters in black
velvet with lacework collars
in a rare formal portrait –

my granddaughters in rainbow-
and-unicorn pajamas
in pandemic London –

or is it the dimples
that appear with smiles
the entwined arms

the mischievous glance?

Dealing with dementia

AARP recently published a gut-wrenching, heart-warming article entitled Tony Bennett’s Battle with Alzheimer’s.

Alzheimer’s runs in my father’s family. Paco’s father and all three of his siblings who survived into their seventies struggled with it. Because of his history, Paco enrolled in a long-term medical study on the effects of medications as possible preventatives for symptoms of the disease, which, unfortunately, did not find any effective medications.

As Paco aged well beyond the onset age of his afflicted family members without symptoms, we were relieved, as it looked like he might have avoided those particular family genes. People did always say that he took after his mother’s side of the family.

There are, however, other types of dementia, the risks of which increase with age. Paco, who will turn 96 next month, is suffering from some unnamed type of dementia. We are grateful that, while the memory loss is problematic, he has retained his generally cheerful disposition, sparing us all the personality changes that were so jarring in Paco’s father and siblings.

He has been having memory loss and cognitive problems for several years, which we had been managing with daily visits, phone calls, notes, pill organizers, and staff help. Things got immensely more complicated when COVID limited our in-person visits and disrupted Paco’s daily routine. It also made a possible move to the assisted living unit where his care could be better addressed more difficult, as family visits were nearly impossible for months.

When Paco became ill and was hospitalized in December, the decision to move out of his independent living apartment was made for us. There was no way that he could be safe without 24/7 staff availability, which he now has in the assisted living unit, where he has his own living room, kitchenette, bedroom, and bathroom along with three daily meals plus snacks, a nurse to manage and deliver his medications, aides to assist with activities, and the company of the other residents, all of whom have now been vaccinated against COVID-19 and most of whom he knew because they also started out in Independent Living in their senior community. Unfortunately, in-person visiting of people outside the unit is severely restricted, although I’m hoping that increasing vaccination rates and warmer weather permitting outdoor visits will ease the situation in the coming months.

Because I genuinely do try to address issues that are on the top of my mind here, it’s been difficult not to write about Paco’s dementia more directly over these last years. For a good chunk of that time, I avoided it because Paco followed my posts via email and I was afraid posting about it would further confuse or upset him. Now, he is well beyond being able to navigate email and websites, so I don’t have that worry – and the few people who read my blog and know Paco in real life already know the situation.

In truth, I’ve also had difficulty articulating my thoughts and feelings around this. Although my family dealt with cognitive decline with both my mother and father-in-law when they were terminally ill, Paco’s long, slow loss of memory has been even more excruciating. While I can adjust to the loss of short-term memory that results in answering the same question multiple times in a short phone conversation, I have a harder time dealing with the loss of long-time skills and words. When he can be looking at a dinner plate with his favorite food but not remember what it is. When he forgets the name of someone he has known for decades. When he, who was always meticulous in following his finances, can no longer add numbers.

It’s painful. Every time. And hard to express in words. Even in poetry.

My consolation is that it is seldom upsetting to him. By some grace, he is handling things with equanimity with only occasional moments of frustration.

He keeps reminding me of his favorite saying, “We’ll take it one day at a time.”

first Pfizer vaccine dose!

Yesterday, I officially shed my membership in the placebo group of the Pfizer/BioNTech coronavirus vaccine Phase III trial and became part of the vaccine group.

Yay!

There was a blood draw first, so they can check to see if I already have antibodies, which is unlikely given my personal history, and can compare it to my bloodwork from earlier in the trial after my placebo shots. There was also a COVID test to see if I have an active infection, which is also unlikely because I have no symptoms and community spread is quite low in our area at the moment.

While I was waiting for thirty minutes for the vaccine to come up to room temperature and for thirty minutes after injection to make sure I didn’t have an adverse reaction, I was able to get some family business done. With spouse B and daughter T’s consent, I was able to pick up their vaccine cards, showing the dates back in August when they received their immunizations. Although we had long suspected that they had received the vaccine and I had received the placebo, we are happy to have the confirmation – and the documentation to prove it. As a higher proportion of the population gets vaccinated, we may need to be able to prove our vaccination status for accessing public transportation, employment, visiting privileges with Paco in his senior community, etc.

The Biden administration is working to get more Pfizer and Moderna vaccine doses out to the states for distribution and the United States may soon have a third vaccine receive emergency use authorization. If approved, the Johnson & Johnson vaccine would be a big help in getting more people vaccinated in more locations around the world more quickly. It is administered as a single dose and can be stored at regular refrigerator temperatures, making it much easier to distribute than the current mRNA vaccines which need very cold storage and two doses. The J&J vaccine will be much easier to get to rural folks and places that don’t have good access to public transportation and medical centers.

The more vaccine available and the more people vaccinated, the sooner we have hope to end the pandemic. This needs to happen everywhere around the world, though, for the pandemic to end. There have to be so few people that are susceptible to the virus that it can’t find enough hosts to continue spreading in the community. Until that point is reached, people will still need to be careful about masking, distancing, and hygiene.

We also need to be vigilant about virus variants and the length of time immunity lasts after infection or immunization. That’s why I’m proud to be able to play my small part in the fight by participating in the Pfizer trial. The data from this latest batch of former placebo group members will show if the vaccine remains effective against the new variants in circulation and add to the statistics of how long immunity lasts as we will be followed for at least another eighteen to twenty-four months.

Today, I have a sore arm and a bit of a headache, both expected side effects from a first dose. It’s a very small price to pay for the beginning of personal protection and the advance of science to help the world understand and defeat COVID-19.

SoCS: surprise poem

I carved out a bit of writing time today – a rarity in the whirlwind that has been my life lately.

I went to Linda’s blog to read the Stream of Consciousness Saturday prompt which is:

Your prompt for #JusJoJan and Stream of Consciousness Saturday is: “the beginning, the end.” Write about the beginning of something and the end of  something. Bonus points if your first sentence contains “the end” and your last sentence contains “the beginning.” <– Read that again. Have fun!

I admit that I couldn’t wrap my head around beginnings and endings as I am mired in a seemingly endless middle with lots of twists and turns and no real clarity of if/when there will be a conclusion, so I set the whole enterprise aside and decided to do some housekeeping in my overcrowded Google Chrome window. One of the first tabs I went to was one for The Ekphrastic Review, which has a new monthly column on ekphrasis, which is the practice of basing one work of art on another, most often used in the context of writing poetry based on visual art pieces.

While I was there, I figured I should check out the current Ekphrastic Writing Challenge. It is a painting called The Two Sisters by Théodore Chassériau. Given that I have sisters – and two daughters and two granddaughters – the painting inspired a poem in response, so that has become my beginning (middle) and end for this post.

Well, perhaps not quite the end yet. The poem does have an end, of course, but the real ending will be when I submit it to the challenge. I want to let it set a bit and will probably share it with daughter T. I don’t have another meeting of my critique group before the entry is due, so I’ll have to trust sending it without professional critique and revision.

Still, it was nice to have a poem appear on a day that I hadn’t expected it – and to have a blog post appear when I didn’t think I would have one of those either.

But no bonus points for me this time around…

*****
Join us for Linda’s Just Jot It January and/or Stream of Consciousness Saturday! Find out more here: https://lindaghill.com/2021/01/29/the-friday-reminder-for-socs-jusjojan-2021-daily-prompt-jan-30th/

what today calls for

There are some days when you just need to make a spice cake.

Wait. That is probably not true. Let me re-phrase.

Today, I needed to make a spice cake.

This afternoon, while driving home from a trip to deliver a medication to the nurses at Paco’s assisted living unit and stopping to have a document notarized stating that my power of attorney for him is in effect, after a morning spent with him at a new specialist, I was seized with a desire to eat spice cake.

It’s not one of those things you can easily buy at the supermarket or bakery, so I pulled out my Betty Crocker cookbook when I got home and set to work.

Why spice cake? It is an old-time favorite that fills the kitchen with a wonderful aroma as it bakes. When B and I were married in the early ’80s, I chose a spice cake with buttercream icing as our wedding cake, a daring choice in the age of white wedding cakes with sugary white icing. I still love the taste of cinnamon, nutmeg, and clove and find them comforting.

Spice cake stands on its own. It doesn’t need to be layered and frosted. A simple, square pan suffices.

A bonus bit of nostalgia was also involved today.

One of the things I brought home from cleaning out the kitchen in Paco’s apartment in independent living was a set of RevereWare metal bowls that Nana had used when we were growing up and kept all these years. While I had my own set from when B and I first set up house, my mother’s were heavier and the largest bowl of the three was larger than my own set.

It was this largest bowl that I used today to mix my spice cake.

It’s in the oven now.

I have several dozen other things I should be doing right now, but I am instead writing this post, thinking about my parents and home and the passage of time and what is important and the meaning of making spice cake for my family.

And breathing in the scent of cinnamon, nutmeg, and clove.

the meaning of January

Linda’s Just Jot It January is designed that anything one jots down can be transformed into a #JusJoJan post of the day.

Fortunately for all of you, I haven’t been taking this literally.

Otherwise, my January would be filled with texts, emails, and long lists of questions and reminders as I have tried to navigate the complexities of dealing with the care of my father, known here as Paco, in the time of COVID.

As the new year began, Paco was nearing the end of a stay in the rehab/skilled nursing unit in the health care center of his senior community, following five days in the hospital in mid-December. We were trying to finalize his move into the assisted living unit, which also triggered the need to close out his independent living apartment as soon as practicable. There were also issues with his medical and personal care to deal with – and, due to COVID restrictions, it all had to be done by phone or email or picking up and dropping off documents and forms and signed permissions, with only occasional in-person contact, none of which could be with Paco.

It’s been, in turns, confusing and frustrating and harried and bureaucratic – and perpetually exhausting.

It’s also been very difficult to write about.

So, here I am, trying once again to sum up the situation and convey it in words, unsure that I am capable of doing so.

A few days before Paco move to assisted living, we noticed that he was struggling with some everyday kinds of things like using the telephone. I expected that an infection he had had had returned and managed to convince the medical team to test for it. It turned out that I was correct but the test results didn’t come back until Paco had already moved to his new place in assisted. He was started on a new medication, but the combination of the infection, medications, being in a new environment, having to do another 14-day COVID quarantine because he had moved to a new unit within the health care building, and not being able to see family or have them help him set up his new place has made an already daunting situation extremely difficult.

I am doing the best that I can to care for him, but it is not good enough and I can’t manage to fix everything in a timely way. I’ve made some progress but the pace has been slow. While I am not by nature an impatient person, after so many weeks of this, I am frustrated and immeasurably sad.

The comfort I have is that Paco is seemingly unaware of all the complexities of the situation. He doesn’t usually remember the things he used to do before this latest illness, so he isn’t really missing them. While his memory is impaired at this point, he has not had the personality changes that affected other members of his family when they developed dementia, so he is generally in a good mood, although his fatigue level does sometimes put a damper on things.

So, here we are, starting another week. There are more lists of things to do, people to call, tasks to accomplish. One big thing that is (nearly) completed is the closing out of Paco’s old apartment. I turned the keys in last week, but the person I needed to interface with wasn’t there, so I’m not entirely sure we’re finished with the process.

Sometimes, people choose a word or phrase for the new year. Perhaps, for me, this will be the year of “not entirely sure.”

Like last year, 2021 may be a year of uncertainty.

Unmasked!

As my more frequent readers may recall, spouse B, daughter T, and I are all participants in the Pfizer/BioNTech coronavirus vaccine trial. The vaccine received emergency use authorization in the United States in December 2020. Pfizer is now unmasking people in the placebo group and offering to make them part of the vaccine group for further study as they plan to follow participants for two years to gather data on long-term efficacy.

Earlier this week, I received a call saying that I was in the placebo group, which B, T, and I had long suspected as they both had side effects after our injections but I did not. I will receive my first injection with the real vaccine in early February, timed to coincide with the end of the waiting period after the shingles vaccine I had this month. I am grateful for the opportunity to receive the vaccine and to contribute to the data which will help keep more people from suffering the worst consequences of COVID and eventually end the pandemic.

While we will still need to mask and distance, I’m hoping that, as I and others around me are vaccinated, I will be able to return to some places that I have not been able to visit. I may, at least occasionally, make a reservation to attend mass on the weekend, something that I always did pre-pandemic but have not done since March 2020. I may visit with friends indoors, which would be nice given that outdoor visits are tricky in the winter. Eventually, we may be able to travel again, although I’m afraid a trip to London will not be possible for some months.

The other piece of good vaccine news from our family is that my 95-year-old father, known here as Paco, has received his second shot of the Pfizer vaccine. In a couple of weeks, he should reach his maximum level of protection. This is particularly important because he is in an assisted living unit, which is considered a higher risk living situation. Presently, visiting is very restricted. T was able to visit him in person for half an hour today in a socially distanced visiting room; earlier this week, I was able to do a window visit, where we could see each other through a window while we spoke by phone. I am hoping that, as residents and staff all receive their vaccinations and as more members of families receive theirs, the state will relax visiting restrictions to allow masked visits into residents’ apartments. We haven’t been able to see Paco’s new place yet and would love to be able to help organize things for him.

In our little corner of upstate New York, we are chipping away at the pandemic, doing what we can to bring it under control. We know, though, that things in the country as a whole will be difficult throughout the winter. We have passed 414,000 deaths in the US with the expectation that we will reach half a million deaths in February. It’s staggering.

I’m hopeful that the Biden administration’s leadership and plans will help us get through this winter with the least amount of damage possible, although we have been warned that things will get worse before they get better. I hope each person will do what they can to help in the effort.