Author: Joanne Corey

Please come visit my eclectic blog, Top of JC's Mind. You can never be sure what you'll find!

SoCS: the last year

I had planned to post about the pandemic anniversary today, so it was fortuitous that Linda took the occasion to have us write about our past year. She also gave us permission to edit if we chose, so this post will be only stream-of-conscious-ish. I’m hoping to only need to do light editing.

So, compared to most other people in the US, I have been fortunate over this pandemic year. My spouse B has been working from home so we didn’t take a financial hit. He and I and daughter T have been safe in our home. My state, New York, was initially hit very hard by the pandemic, although not as much so in my home region of the Southern Tier. While we did have a period of time as a local COVID “hot spot,” we followed the precautions on masking, avoiding gatherings, handwashing, etc. and stayed safe.

This is not to say that we didn’t have to make changes in our lives. T’s job search has been on indefinite hold. Grocery shopping and meal planning became a major endeavor for me, due to shortages and restrictions. Some of my poetry activities moved online, but the year hasn’t been as productive as I had hoped. The Boiler House Poets Collective annual residency at MASS MoCA was cancelled due to COVID, although I did craft my own writing retreat in North Adams in late summer which turned out to be a perfect time, given the sooner than expected fall surge. (Additional posts from that time are here and here.)

There are two big personal impacts for me as a result of the pandemic. The first is the separation from daughter E and her family, who live in London, UK. We visited in December, 2019, with plans for several 2020 trips, including a visit to meet our new grandchild, and a plan for them to visit us here in the States in December 2020. None of that happened, due to COVID. While we have been in touch virtually, we have all been largely confined to our respective homes. It’s been hard watching from a distance as they dealt with likely cases of COVID in their household at a time when there wasn’t even testing available unless one needed hospitalization. We missed granddaughter ABC’s third birthday and the birth of granddaughter JG. We missed ABC starting nursery school, which has been variously in person and virtual depending on how viciously the virus was spreading in London at any given time. JG is now seven months old and we have no idea when we will be able to visit. She may be a toddler by the time we get to meet in person.

The second personal difficulty has been trying to care for my almost-96-year-old father, known here as Paco. Before the pandemic, we visited him every day in his apartment in the independent living building of his senior community. His memory was poor, but we were able to keep him safe and on an even keel. Once the pandemic began, though, we needed to limit contact, so we reverted to handling most things by phone with screened staff handling some tasks that had to be in person. This proved to be difficult but when Paco developed a medical problem that required a few days in the hospital, it became impossible for him to be safe in his apartment. In December, he moved to the health care building, first for three weeks of rehab in the skilled unit and then permanently to the assisted living unit. This is where he needs to be at this point, but due to state COVID rules, it was very difficult to visit in person. I am happy to report, though, that yesterday and today we had our first visits to his new apartment; before that, we had to meet in the visitors room or do window visits where we spoke by phone on either side of a window. We still have to mask and distance, but we could at least organize and tidy his rooms for him.

The greatest difficulty that is more universal is the sorrow at the immense cost the pandemic has exacted. So much illness. So much death. So many without even the most basic essentials for a secure existence. So much social isolation. So many who risked their own health to meet the needs of others. In the United States, the bewildering politicization of the crisis.

As we have been commemorating this first anniversary of the pandemic, though, I am feeling hopeful. We are about seven and a half weeks into the Biden administration and vaccine distribution has seen a big boost. Although the number of cases, hospitalizations, and deaths is still much too high, it is lower than it has been in months. In New York State, we are able to continue our gradual, science-and-metrics-driven increase in public activities. I went to church in person for the first time in a year today. It feels like we are making real progress toward ending the pandemic.

Real hope after a year of fear.

I’m very grateful for the vaccines and the people who are being diligent in observing public health measures. I’m grateful that B, T, and I were able to be of public service as participants in the Pfizer vaccine trial, which I’ve written about frequently here at TJCM.

I admit the fear isn’t totally gone. It’s upsetting to see people who are ignoring public health advice still. Especially with so many variants of the virus active and so many people unwilling to be vaccinated, it’s possible the virus will start to surge again.

Still, for the first time, the hope outweighs the fear in my mind.

Please, everyone, be careful. Stay safe. Protect yourself and your neighbors. We can end the pandemic after this awful year.

Together.

*****
Linda’s prompt this week was to write about our experiences over this last pandemic year, stream of consciousness style or not, or “day/week/month/year.” I chose the first option. Join us! Find out more here: https://lindaghill.com/2021/03/12/the-friday-reminder-and-prompt-for-socs-march-13-2021/

JC Confessions #18

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, now a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

JC

I do not know how to apply make-up.

Other than the fact that I couldn’t teach my daughters how to do it, this has not been a hardship in my life. I’m comfortable with my natural look.

My main experience with make-up dates back to high school, when I was in some musicals. We had to wear make-up so that we didn’t appear washed out by the harsh lights and distance to the audience. This generally meant very heavy eyeliner and some blush, which looked good from far away and comical up close. Once, when I was playing Sister Sophia, one of the older nuns in The Sound of Music, I sported black lines on my face to make me look older. I remember getting comments that I looked good that way, which I chose to take as compliments of how I would look as I aged rather than criticism of how I looked at seventeen.

The thing about not wearing make-up that does bother me sometimes though is the association that many people make that if a woman does not wear make-up, she is “letting herself go.” While it’s true that I don’t wear make-up, I am not unkempt. While I understand that many women will not go out in public or attend video meetings without wearing make-up, it doesn’t mean that those of us who choose to present our natural skin to the world are less competent, committed, or caring than they.

Make-up is also touted as a way to “look younger.” I prefer to look, well, how I look. Admittedly, I am not good at guessing how old people are. I’m now sixty, so this is what 60 looks like for me.

I wonder if my long-ago teen classmates would think that Sister Sophia was sixty and I look like her now…

One-Liner Wednesday: true or false

Our brains prefer a simple falsehood to a complex truth.

Brian McClaren describing complexity bias in an insightful post

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2021/03/10/one-liner-wednesday-thief/

Governor Cuomo, continued

I wrote here about the developing situation with Andrew Cuomo, our governor here in New York State, where I live in Broome County, far from both New York City and Albany, our capital. In the week and half since I wrote, things have become increasingly contentious, both on the reporting of nursing home death issue and the sexual harassment/bullying issue.

The nursing home death reporting issue parameters are largely unchanged. The administration reported deaths where they happened, whether in a hospital, nursing home, or elsewhere, such as a private residence. Some people wanted to know how many of the hospital deaths were people who had come to the hospital from nursing homes; they wanted the term “nursing home deaths” to refer to people who had likely contracted the virus in a nursing home, regardless of where they died. The newest wrinkle in this is that it appears some of the governor’s top aides edited a report over the summer in such a way as to not reveal how many of the hospital deaths were people who had come from nursing homes at a time when the governor was writing a book on his leadership during the pandemic.

In reaction to all this, the legislature has rescinded the broad authority to take executive action that it had granted to the governor last spring. This is their right to do, of course, but I would feel better if they committed to staying in session past June. Getting things through the New York State legislature is often a long, drawn-out affair and there are times with the pandemic when things change quickly and new policies need to be enacted as expeditiously as possible. The governor can continue to extend existing executive orders.

I am grateful that the existing orders can still stand because, by and large, they have worked well in keeping as many New Yorkers safe as practicable. While the initial outbreak in New York was horrible, the policies the governor enacted in conjunction with public health, medical, scientific, and legal experts were adopted by the public and brought the infection rate down well below the national average. Although there have been spikes, for example over the holiday season when many people travelled and gathered in groups against the state and public health recommendations, New York has not suffered the fate of other states that didn’t implement mask mandates, distancing requirements, gathering size restrictions, etc. or that lifted restrictions too quickly. By being thoughtful and incremental in re-opening and by gathering, analyzing, and adjusting in response to data, most New York businesses and schools are open and are expanding hours as our vaccination rates go up and infection rates go down. New York needs to continue on its science- and data-driven path to keep from suffering the spikes we have seen in other states that were less thoughtful in their plans. Governor Cuomo made mistakes during the past year, but he took responsibility for them and changed policies to correct problems. His leadership mattered and I will always be grateful for what he did because he helped as many New Yorkers as he could to survive a devastating year.

I think New Yorkers need to remember that Governor Cuomo is also a regional and national leader. He spearheaded an effort in the Northeast for states to cooperate on policies and on procuring supplies after the prior federal administration decided not to have a national strategy. In 2020, he was vice chair of the National Governors Association; in 2021, he is chair. This gives him even more opportunity to advocate for policies to help everyone in the US in these trying times. In a few days, it is likely that federal aid to state and local governments will finally be enacted as part of the American Rescue Plan, an initiative that Cuomo has been championing since last spring.

I admit that I am somewhat perplexed that people are surprised by Cuomo’s personal behavior. Any casual observer of New York politics or regular viewer of his pandemic press conferences has seen him being combative and displaying his sense of humor, which ranges from dry to caustic. His sense of what is appropriate to say in public is – um, let’s say – less circumspect than one would expect. He seems especially unable to understand younger people’s sensibilities. For example, when his three 20-something-year-old daughters and one of their boyfriends were living with him last year, he said any number of embarrassing things regarding them. I don’t think he really understands current mores on what is appropriate to say or do in work settings, which is why I think his apologies following the young women’s stories of feeling uncomfortable with his behavior are credible. He is as clueless as Joe Biden who faced criticism for touching and whispering in the ears of women while on the campaign trail or George W. Bush who tried to give German Chancellor Angela Merkel a shoulder rub.

I think that the independent investigation that is ongoing is very important to gather evidence on stories of sexual harassment and hostile work environment. If there is evidence of impeachable acts by the governor, then that should take place. Unlike a corporate executive, the governor is elected by voters, not a board of directors, so there is no relevant authority to fire him or force him to resign. While some state legislators have gone on record calling on Gov. Cuomo to resign because these investigations are a distraction, the governor is carrying on with his duties, adjusting the pandemic policies as conditions warrant and getting ready for budget negotiations with the legislature. Unlike most states, New York’s budget is supposed to be passed by April first, so, once the American Rescue Plan is signed into law, there will be a short window in which to finalize and pass the state budget. Although Lieutenant Governor Kathy Hochul has been involved in the pandemic response, especially in her home region of western New York, it would be much more disruptive to the state budget process to have Gov. Cuomo step down at this time.

While I admire Governor Cuomo’s leadership through the pandemic, I do not admire him as a person. I find him to be arrogant, overbearing, and a boor. Unlike his father, the late Governor Mario Cuomo, who was principled and articulate, Andrew has always been a bare-knuckles brawler and bully as a politician. Despite being a Democrat, during his early years as governor, he governed more like what used to be a moderate Republican. He and then New York City Mayor Michael Bloomberg were willing to inflict the health and environmental consequences of fracking on our area, as long as the watershed for New York City water supplies was kept free of drilling. (The eventual fracking ban in New York was thanks to Dr. Zucker of the Health Department and later passed into law once the Democrats had the majority of both houses of the legislature.) It wasn’t until it was clear that the national electorate was becoming more progressive and the Democrats controlled both houses of the legislature that Governor Cuomo started to govern and talk like a Democrat.

Because past Republican candidates for governor have been unqualified and put forward ideas which I oppose and because I didn’t like or trust Andrew Cuomo, I have been voting for the Green Party candidate for governor, whose platform aligns most closely with my own. Granted, in heavily Democratic New York, it was unlikely that my choice to vote third-party would have any real bearing on the outcome of the elections, but I wanted to make clear here that my admiration of the governor’s handling of the pandemic was not a reflection of my being a fan of him personally. Likewise, my observations of his personality and behavior are not coming from a place of partisanship.

At this point, my main motivation is pragmatism. The next couple of months are critical in the course of the pandemic. As national health experts and the Biden administration are pointing out repeatedly, we need to be cautious in ending pandemic protection measures until we have a much higher level of protection among the general public. Texas and a number of states have, as they did in previous waves, lifted restrictions too soon. Governor Cuomo will continue to follow the science to keep us from having a large spike in cases. He is also setting up vaccine sites among underserved populations, trying to address the health and social inequities that caused people of color and those with low income to be hit hardest by the pandemic. I don’t think the New York State legislature is nimble enough to address these issues and I’m not sure if Cuomo’s prior executive actions would stay in force if Lt. Gov. Hochul were to become governor.

Also, the budget negotiations will be very difficult. In New York, for a number of complicated historical reasons, the budget gets hammered out largely by the governor, the speaker of the Assembly, and the majority leader of the Senate. The budget also includes a lot of non-budgetary legislation; one hot topic in the last several fiscal years has been the legalization of recreational marijuana. I don’t think it would be fair to expect Hochul to be thrown into the midst of that process with the deadline coming up in three weeks.

I have often written about how the stress of our governmental function adds to my personal stressors. After the November election, I had hoped that, by this time, the governmental stress might have eased more than it actually has. With the aftermath of the insurrection and the state of the Republican party on the national level and the upheavals with Governor Cuomo, my hopes were not fully realized.

But, hey, what’s life without stress?

I’ll never know.

SoCS: an excuse to eat butter

There was a long period in the US where the dietary advice was to avoid fat, especially animal fat, in our diets. During that time, I didn’t each much butter.

This was sad!

More recently, the recommendations have changed somewhat, so I do use more butter now.

I especially like homemade bread with butter. The usual butter that I use for spreading is a spread made of grass-fed cow-milk butter and a bit of oil to keep it from being too hard.

We also keep both salted and unsalted butter for cooking and baking. B has recently discovered that his family’s shortbread recipe comes out much better using unsalted butter. I ran across an article that explained why; it has to do with the moisture content difference between salted and unsalted butter. The recipe is so old that it didn’t specify the type of butter, but may have gone back to the day when people made their own butter, which likely would have been unsalted. The recipe does call for a bit of salt. Other than that, the only ingredients are flour and a small amount of sugar.

Shortbreads are basically an excuse to eat butter, and a very delicious excuse at that!

*****
Linda’s prompt for Stream of Consciousness Saturday this week is “butter.” Join us! Find out more here: https://lindaghill.com/2021/03/05/the-friday-reminder-and-prompt-for-socs-march-6-2021/

more good vaccine news

An update to my last post on coronavirus vaccines in the United States:
The Johnson & Johnson vaccine did receive emergency use authorization over the weekend and is currently being distributed. Because the company had manufactured some doses in advance through Operation Warp Speed, there will be some large shipments going out followed by a lag as Johnson & Johnson ramps up their manufacturing operations.

President Biden announced on Tuesday that another large pharmaceutical company with vaccine expertise, Merck, will be helping Johnson & Johnson to manufacture its vaccine. Merck ended a couple of vaccine trials it was conducting due to ineffectiveness and will be aiding the country in manufacturing its rival’s vaccine under the Defense Production Act. This Act is also being used to increase production of other needed items, such as vials.

Unlike the Pfizer/BioNTech and Moderna mRNA vaccines, the J&J vaccine is a more conventional vaccine, using inactive adenovirus to carry the vaccine into the body and activate the immune system. It only requires one dose and can be stored at refrigerator temperatures, so it is much easier to distribute to more rural areas.

While President Biden had previously said that any adult who wanted to be vaccinated would be able to be by the end of July, he now expects that to be possible by the end of May. This would allow most of us to resume what we have been calling “normal life,” although I think that some changes from our old ways of doing things will probably be in evidence indefinitely.

However, there are some big ifs. The first is that individuals would need to almost universally accept the vaccine to prevent it spreading in the community and to minimize the impact of new, possibly more dangerous variants. This would need to happen in every state – and in every country, if unrestricted international travel is allowed to resume. The second is that people would need to continue masking, distancing, limiting gathering size, etc. until most of the adults in the community were immunized or could be rapid-tested to show they were not likely currently infectious. New York is currently piloting holding sporting events using technology to screen for immunization/negative tests to allow higher occupancy for fans.

Another consideration is teens and children. Currently, only the Pfizer vaccine is authorized for use in 16- and 17-year-olds; it is currently being tested in 12-15-year-olds with plans to test in younger children after that. Other companies are also now beginning to study their vaccines in children and teens. Wide adoption of the vaccine among adults is the quickest route to protecting children, given that widespread vaccine use is unlikely for them until 2022.

The wild card continues to be how long-lasting vaccine effects are and how well they prevent serious illness from current and future variants. To that end, spouse B and daughter T are having blood draws this week to evaluate how their immunity is holding up as part of the Pfizer Phase III trial. They received their immunizations in August 2020 and will continue as part of the study into 2022. It’s also possible that Pfizer will be piloting the use of booster shots or of new vaccine formulations to better deal with variants, using the subjects already enrolled in Phase III. They have begun some of this research with Phase I/II participants.

Other vaccine researchers are continuing to study boosters and new vaccines, as well as longevity of immunity. Part of the story about Merck helping to produce the J&J vaccine and other similar partnerships around the world is that the extra doses may be needed as boosters in the future. If not, the surplus vaccines can be distributed through the COVAX initiative internationally to reach underserved populations.

All in all, it’s a hopeful time, but only if people are informed, thoughtful, and community-minded. Please, observe safety measures, get vaccinated when it is your turn, and be kind. We can end the pandemic sooner if we all work together.

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.

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

*****
Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2021/02/24/one-liner-wednesday-art/

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.