Governor Cuomo

During the pandemic, I have listened to dozens and dozens of press briefings with New York Governor Andrew Cuomo. I appreciated his updates on COVID, the latest medical findings, and what New York was doing to address the illness and all the other issues that arose from it. I live in upstate New York, so the information he provided was especially relevant to me, but there were many around the United States and even abroad who tuned in.

In recent weeks, there have been legislators and press members who have been critical of the governor and his administration’s handling of the reporting of deaths in relation to nursing homes. The state reported deaths by where they occurred; people who died in hospitals were reported as hospital deaths, even if they had been nursing home residents prior to hospital admission. This was the state’s consistent practice and one which was straightforward and easy to compile from death certificates. All COVID deaths in the state were reported, categorized by place of death.

The problem arose because legislators and the press wanted to know how many nursing home residents later died in hospitals and how many formerly hospitalized patients died in nursing homes. This information is more difficult to compile and the governor’s staff, who worked seven days a week for months on end, did not have time to comb through all the records to assemble a report. Unfortunately, this was perceived as a cover-up of something nefarious and things have gotten totally out of hand with accusations flying everywhere.

I am annoyed at those in the legislature who are upset with the governor over this. When they requested the information they were not in session. Like many states, the New York legislature only convenes part of the year, usually January through June. If the legislature wanted this information, they could have offered to have the legislative staff compile it, rather than expecting the executive staff to add it to their already long list of duties.

There has also been questioning of the state policy to release COVID patients to skilled nursing facilities after hospitalization, especially in spring 2020 when the virus was so widespread in New York. This was based on federal policy. It got patients who had recovered sufficiently out of the hospital, putting them in a more comfortable, less risky environment while freeing up hospital space for more critically ill patients. Although these discharged patients were likely no longer contagious, the nursing homes had to be equipped to place them in isolation. Because I was listening to Governor Cuomo’s press conference every day, I knew that, contrary to some reporting at the time, nursing homes were not “forced” to take patients; they only accepted them if they were equipped to do so. Somehow, this morphed into stories that COVID was introduced into nursing homes by these recovering patients. In truth, COVID entered the nursing homes through staff who were living, shopping, etc. in the local community.

I am not an uninterested bystander in this case. My father lives in a senior facility which has been operating under COVID precautions for almost a year now. Despite that, they have lost at least six residents to COVID and have had more infections from which residents were able to recover. The cases originated from the outside community, not from a resident discharged from the hospital. The staff of the facility is tested at least weekly and screened for symptoms daily, but, as we know, the coronavirus is virulent before symptoms and before it shows up as positive in a test, so staff have unknowingly exposed residents, their families and co-workers.

Somehow, it has become easier to just blame Governor Cuomo. The legislature is threatening to revoke the emergency powers it granted to the governor to handle the pandemic, which is their right to do. However, if they do that, they had better be prepared to remain in session and react quickly to changing circumstances with disease variants, vaccinations, etc. The New York state legislature is not known for being agile – or even functional a great deal of the time – so they had better think carefully before they vote. It’s a lot easier to complain than it is to govern.

There have also been complaints of the governor bullying people and recently of sexual harassment. I am not commenting on those accusations at all as I have no basis to judge their veracity. I did want to address the reports on deaths and nursing homes because those are matters of public record and were clear to me as they were unfolding. Suffering the loss of a loved one is difficult enough without having questions about the circumstances of their death circulated in the press.

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good news, bad news, and uncertainty

Yesterday, I got my second dose of the Pfizer/BioNTech coronavirus vaccine as part of their ongoing Phase III trial. As I have written about previously, spouse B, daughter T, and I are all participants but they both received the vaccine last August, while I was in the placebo group. After the vaccine received emergency use authorization, Pfizer unmasked the study so that placebo group folks could receive the vaccine as well, which I gladly did.

B and T both had a day after their second vaccination that they didn’t feel very well, so I planned today as a down day for me. I do have a sore arm, headache, some body aches, fatigue, and a low-grade fever, but ibuprofen and rest are helping somewhat. Only a small minority of people have this level of side effects, but I am more than willing to not feel well for a day in order to have as much protection as I can from the severe form of COVID-19. While the science is not yet clear if the vaccine prevents asymptomatic or mild disease, the data show that moderate and severe cases that lead to hospitalization and/or death are rare.

I am grateful that Paco was among the first at the Health Center in his senior residential facility to receive the vaccine. Two weeks from now, when I will be considered to have peak immunity, it will ease my mind when I am allowed to meet with him indoors to know we are both fully vaccinated. We will still need to wear our masks and keep some distance, but it will feel safer than it has over this past year.

More good news on the vaccine front is that Pfizer and Moderna have been able to ship more doses of their vaccines than they had previously and that the Biden administration has improved distribution in conjunction with the states and local pharmacies and health centers. Pfizer has applied for permission to store its vaccine at regular, rather than ultra-cold, freezer temperatures for up to two weeks, which will make distribution easier. Another positive development is that the Johnson & Johnson vaccine candidate may receive emergency use authorization as early as this weekend. It is a one-dose vaccine that can be stored in the refrigerator, which will make distribution in rural areas and neighborhoods without good transportation options much more effective.

The worry, though, is that more variants of the virus are appearing. Some of them are more easily transmitted and may cause more severe disease. It’s not clear how well some of the vaccines work against some of these variants. It’s also not always apparent which variants will become widespread. For example, a new variant has been identified in New York City, but no one knows if it will become dominant, cause greater sickness, or be prevented by the vaccine.

To combat this, both Pfizer and Moderna are looking at changing their mRNA vaccines to account for new variants, as well as studying if a third dose – or even an annual booster – might be necessary to tame the coronavirus and keep it at bay. It’s part of the reason that it is so important for the Phase III trials to continue collecting data, so we can keep immunity levels in the populations as high as possible.

For now, I’m resting, cuddled under a black fleece throw that the clinical research center gave me, with their name embroidered on it, of course. While study participants do receive a stipend, they also occasionally receive little gifts and it’s nice to have this throw to keep me warm today. The best thing, though, is knowing that the vaccines are helping people and that, despite the uncertainties, we are gaining ground in the battle to end the pandemic.

There is still a long way to go and I beg people to continue to wear masks, keep appropriate distance, wash their hands, and avoid large gatherings. Get whatever vaccine is available to you when it is your turn. Check on vulnerable people in your community to see if they need help to stay safe. Support efforts to get the vaccine to vulnerable people around the world.

It takes all of us working together to end the pandemic and rebuild our communities.

One-Liner Wednesday: Simplicity

I would not give a fig for the simplicity on this side of complexity, but I would give my life for the simplicity on the other side of complexity.

Oliver Wendell Holmes

*****
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Lessons (re)learned

I’ve spent the bulk of my time over the last (more than I care to tally) years taking care of various generations of my family, which has involved a lot of interfacing with medical, educational, financial, insurance, religious, and other institutions. Since mid-December, I’ve been mired in dealing with issues around Paco’s health and his move from his independent living apartment into the assisted living unit of his senior community via a hospital stay and a stint in the rehab/skilled nursing unit. There has been an avalanche of problems with medical and caregiving issues, as well as the seemingly more mundane issues of changing addresses, getting mail forwarded, etc.

The intensity of it all has reminded me of lessons I once knew about dealing with institutions, but had managed to forget until they were in front of me, again and often. A caveat on the following list: some institutions or, perhaps more precisely, some individuals within the institution do manage to react both competently and compassionately to individuals in difficult circumstances, but this is more the exception than the rule in my experience.

  1. Institutions are set up to deal with things that fit a certain pattern. If your situation is different in some way, they don’t adjust well – or at all.
  2. Institutions care more about their rules, dogmas, and self-perpetuation than they do about you. This holds true, sadly, even for medical, caregiving, and religious institutions.
  3. Institutions are slow to react to changing circumstances. An example: insisting that you have a special form notarized in order to process an address change, even though you are already sending them a durable power of attorney and a death certificate proving that you have legal authority to do so, when, during a pandemic, this adds personal risk to their client and the notary.
  4. When an employee of the institution makes a mistake, the person can follow those instructions to the letter, but the consequences of the mistake will redound to the person or their loved one. The institution will not make allowances for their employee’s mistake and make things right, even though you were acting in good faith and doing what you were told to do.
  5. Lots of balls get dropped. You can been assured that thing X will take place tomorrow, only to find out the next week that it hasn’t – and that no one remembers that it was supposed to have taken place.
  6. It’s very difficult to get accurate information through when it needs to be relayed through multiple people. I can’t tell you how many times the answer to my question has no bearing on the question I actually asked.
  7. People hear what they want to rather than what you actually say. This is a corollary of point 1.
  8. Institutions don’t want to accept responsibility for their decisions, policies, and errors. They will blame you or the computer or something other than themselves. In New York State, they often blame Governor Cuomo.
  9. Institutions are defensive. A neutral re-telling of facts can be taken by an official as an accusation. This is a corollary of point 7.
  10. Institutions think they know more than you do. Sometimes, this is true. However, it is not true that they can understand someone as well after fifteen minutes of interaction as you do after knowing the person for years/decades.
  11. Having to do everything at a distance makes it harder. While some things are best handled electronically or in writing, others are easiest to take care of in person. One particularly gut-wrenching aspect of our current situation is that we can’t see Paco in person, so we can’t keep on top of what parts of his care plan aren’t being consistently followed. When I do see him and see that he hasn’t shaved for several days, it’s very disconcerting, knowing that someone is supposed to be helping him with that daily and that he isn’t able to articulate that to me or the staff himself. See points 4,5, 8, and 9.

I wish I could say that my relearned lessons made things easier or less upsetting, but they haven’t. I’m tired and frustrated and dreading the next set of problems/tasks awaiting me this week added to the unresolved things from last week.

Wish me luck.

I need it.

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?

One-Liner Wednesday: words

I take it as an elemental truth of life that words matter.

Krista Tippett in Becoming Wise: An Inquiry into the Mystery and Art of Living, page 15

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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.”