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.

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.

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.”

JC’s Confessions #17

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

Today is Super Bowl Sunday, which means that is it the championship of American football.

And I don’t care.

I’m not planning to watch the game or the halftime show or the commercials, which have become an attraction of their own.

I don’t enjoy watching football games. They are very slow; one hour of actual playing time takes at least three hours to accomplish. I am not attracted to watching heavily padded men run around and knock each other down and sometimes sustain injuries.

This year, the Super Bowl is being looked at as a few hours of national unity in the midst of division and I hope that that is true. Personally, I don’t need a game to make me feel like an American. After the attempted insurrection of January 6th, my level of commitment to the country has never been higher.

The sad thing will be that, after the game, the anticipated national unity will revert to what it was yesterday and will be on full display for the rest of the week as the Senate trial over the former president proceeds.

It’s also possible that millions of people will defy public health warnings and meet with people outside their households for Super Bowl parties, which might cause another COVID-19 spike, with attendant hospitalizations and deaths, in the coming weeks.

That would be the saddest Super Bowl result ever.

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.

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.

what hasn’t changed

The last few years have been challenging for me and my family. As I have written in (many) posts, these personal challenges have been compounded by what is happening in the United States.

As I begin a busy week in caring for my family, the back drop is the horrifying news that United States has passed 20 million confirmed COVID cases with over 352,000 known deaths with COVID. It is immeasurably sad – and infuriating because we could have prevented a large share of these with good public health measures and accessible, timely medical care. There is hope for the coming months with vaccines becoming available and the incoming administration has a good team to improve the national pandemic response.

Unfortunately, the current president and many Congressional Republicans are still trying to prevent the duly elected Joe Biden and Kamala Harris from taking office as president and vice-president on January 20th. Over the weekend, an hour-long recording of a telephone call from the president to the secretary of state of Georgia and his legal counsel was released, in which the president repeatedly pressures and threatens them to change the certified election win of Joe Biden to a win for Trump. On Wednesday, both houses of Congress will meet to count the electoral college votes, which will be 306 for Biden and 232 for Trump. Nevertheless, over a hundred Republican members of the House of Representatives and a dozen Republican senators plan to challenge or vote against acceptance of the count from six states Biden won, including Georgia, Pennsylvania, and Arizona. Given that dozens of court cases alleging fraud or procedural problems with the voting system have already been dismissed and the proper certifications by the states have been done, there are no real grounds for the objections and they will be defeated after hours of debate. That so many members of Congress are willing to violate their oath to uphold the Constitution and US law is frightening and disconcerting and does not bode well for passing needed legislation through Congress.

Yes, the change from 2020 to 2021 did not erase any existing problems, but we need to work toward rectifying them and making life better for people, not devolving into lies and blaming others.

*****
Join us for Linda’s Just Jot It January. Find out more here: https://lindaghill.com/2021/01/04/jusjojan-prompt-the-1st-fingertips/