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.

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.

in the middle of a nightmare

The pandemic has been more severe in the United States than globally for months – and now things are getting worse very, very quickly.

Yesterday, there were over 159,000 new cases diagnosed, which broke a record set the day before. There are entire states that are out of intensive care beds – or hospital beds in general. In some states, hospitals have to triage patients and turn some away who would benefit from care in favor of other patients who are sicker but have a higher chance of recovery.

Some places are so short-staffed that COVID-positive staff are continuing to work if their symptoms allow.

The hospitalization rate is also a lagging indicator. If the hospitals are this stressed now, what will the situation be in two weeks, given the huge numbers of new diagnoses this week?

I’ve reached a new level of dread.

New York State, where I live, still has one of the lowest infection rates in the country. Governor Cuomo is tightening restrictions on gyms, indoor dining and gatherings, as well as further ramping up testing and contact tracing in hot spots. Unfortunately, after all these months, there is an outbreak among residents in the skilled nursing unit of my father’s senior living community, as well as a number of staff members. The health center is in a separate building from where Paco lives in an apartment, so we are hoping the virus won’t spread, but it is very worrying for all of us.

And what, you may ask, is the Trump administration doing to address the explosion of cases, hospitalizations, and deaths?

Nothing.

Vice-president Pence, who chairs the coronavirus task force, finally held a meeting this week after several weeks without doing so during the campaign. There were no new actions or recommendations after the meeting.

Meanwhile, President-elect Biden has named a first-rate committee of physicians and public health experts to set up the plan against COVID for his administration, which will begin January 20th. Unfortunately, because the Trump administration refuses to acknowledge that Biden will be taking office, the Biden task force does not have access to the current plans in development for vaccine deployment, distribution of supplies, etc., which is an appalling and dangerous state of affairs.

What is even more appalling and dangerous is that, with the situation becoming more and more dire daily, the Trump administration is making no attempt at all to save people for illness, disability, and death.

I’m finding the level of stress and dismay crushing.

People desperately need help now.

January 20th is still a long way off.

charting a pandemic path

Around the world, most of us are sharing in the battle to limit the damage from COVID-19 to the extent possible.

In some places, the path is proscribed by local or national government and there are not a lot of personal decisions to make.

Here in my county in upstate New York (USA), things are not laid out as clearly. I have been trying to prepare and make plans, but circumstances keep changing – and so must the plans. Our state and local governments and community organizations have been much more proactive than the federal government, but, as more and more cases are diagnosed closer and closer to where I live, additional measures continue to roll out.

Over a week ago, I started the general preparedness guidelines to have a couple of weeks of food and medications available in case we had to self-isolate. This was not a big deal for our house, but I have been much more concerned about preparing things for my dad, known here as Paco. He lives in a senior community in an independent living apartment, so he has a number of services available in-house, but I visit every day to check on him, make sure his medications are all organized and his schedule is laid out, etc. Early last week, a sign went up that people who were having any symptoms of illness should not visit. This is practical and a commonsense precaution that I would follow anyway, but, later in the week, the health care part of the center was closed to all visitors, except those whose loved one is in very grave condition. This meant that Paco could no longer go over to concerts and singalongs held in the health care facility. At the same time, they cancelled activities in independent living that involved outside performers or volunteers. For example, the Irish dancers would not be able to come for a scheduled pre-St. Patrick’s Day performance.

At this point, I had to face the probability that even healthy visitors might not be able to visit independent living at some point, so I started making contingency plans that could be carried out reasonably well without me. Sadly, we’ve had to cancel a planned visit from my sisters and their families to celebrate Paco’s 95th birthday later this month. They all live in areas where the virus is more prevalent and we didn’t want to risk them bringing it with them, given that they might not have obvious symptoms.

Thursday night into Friday, several large employers announced that they would be having most of their employees work from home starting on Monday. The universities had also announced that they were moving most of their instruction online for several weeks or the rest of the semester. Professional sports leagues announced they were suspending or delaying their seasons. Some combination of these functioned as a trigger that caused some people who hadn’t been taking the virus very seriously to spring into action – or, at least, into shopping. I went to my favorite grocery store to pick up a few things for Paco and for my household and was surprised to find that there was almost no peanut butter, canned legumes, frozen vegetables, etc. in the store. And I hadn’t even checked the cleaning supplies and paper goods aisles. The evidence of panic-buying took me by surprise. Given that I had been in concern and preparation mode for days, I had obviously underestimated the number of people who were suddenly paying attention and freaking out a bit.

On Saturday, the county executive announced that all primary and secondary schools will close through mid-April. Now, people are even more upset.

It appears that there are some people who still think that fears of the virus are overblown, given that we have no known cases in our county, even though our neighboring counties do have confirmed cases; they don’t want their personal and family routines disrupted. Others have been following the news and the advice of medical experts and realize that, while we can’t stop the virus completely, there will be fewer deaths and more treatment available to those with severe illness if we can spread out the number of cases over a longer period of time, so as not to overwhelm our medical system. The way to do that is to reduce the number of people who are in close contact and in large groups, also known as social distancing.

There are a number of different opinions about how much distance is required and how many is considered too many to be in a crowd. This leaves some situations to personal discretion. I admit that I had a difficult time figuring out what to do about church attendance this weekend. Our diocese has dispensed with our obligation to attend mass, but services are still being held. I am not especially concerned about my getting seriously ill, but I am concerned with the possibility of bringing the virus into Paco’s community, so I’ve decided to participate in a mass on television. At least for now, I plan to still shop. occasionally eat at restaurants, and attend small gatherings with friends. If we start seeing community spread in my town, though, I’d cut back further. If we get to that point, I’m sure I wouldn’t be able to visit Paco; it’s likely that only residents and staff would be allowed in the building.

I admit that it is disconcerting to know that, despite our best efforts, people are going to continue to get sick, some of them severely sick, and some of them will die. I hope that our communities will face up to this challenge and do as much as we can to protect people, especially the most vulnerable.

Be well. Be kind. Be thoughtful. Be considerate.

SoCS: a disconcerting disconnect

There is a major disconnect between the president of the United States and public health regarding covid-19, the form of coronavirus that is causing illness and death around the world and which may soon cross the line to become a pandemic.

From its start in China, there are now major outbreaks in Japan, South Korea, Italy, and Iran, with cases in lots of countries in both hemispheres. Some of the countries have tested thousands of people, ramped up medical care, imposed quarantines, even closing schools for weeks as was just announced in Japan in the last few days.

Meanwhile, the United States has only tested a few hundred people. There are under a hundred confirmed cases, but most likely there are more cases that only had mild symptoms or no symptoms. This is dangerous because those people can spread the virus unknowingly.

Ordinary Americans have been watching the news of the spread of covid-19, first in China and then into other countries. Some doctors and public health specialists were speaking in the media about the epidemic – and preparedness and cases in the US. Earlier this week, some federal government officials who work in agencies like the Centers for Disease Control and Prevention had spoken publicly about the virus in the United States.

The stock market in the United States went down – a lot – this week, the steepest decline since the financial crisis of 2008. This finally got the president’s attention and there was an evening news conference about the virus in the US. Unfortunately, the president made mistakes in his remarks, including saying there were only 15 cases in the US when there were actually 60 confirmed cases. He also put the vice-president in charge of the US efforts against the virus, which is disconcerting because, as governor of Indiana, he botched an early intervention effort against HIV. It’s also disconcerting that all communication from the federal government has to be approved by him first, including public statements by Dr. Anthony Fauci, longtime director of the infectious disease department for the country.

Late this week, there was the announcement of the first covid-19 case that couldn’t be traced to someone who had contracted it abroad. This is an important development because it could mean that there would be community spread here in the US, which would also bring the world closer to declaring a pandemic. It’s scary because it brings to mind the flu pandemic of 1918, which infected millions worldwide and had a mortality rate of almost two percent. Early statistics from China show that covid-19 has a mortality rate of a little over two percent, which is beyond the ability of even large modern health systems to combat. There would be shortages of needed equipment like respirators and of appropriate hospital facilities that can isolate the patients so that no one catches the virus in the hospital.

Yesterday evening, I was watching a news station. Several times throughout the evening, the stories they were covering were interrupted by news of several new confirmed cases in different locations that appeared to be the result of community spread, instead of direct transmission from abroad or from being in the household of someone who contracted it abroad. This bring some communities in the US close to needing to impose states of emergency and doing things like prohibiting public gatherings, including school and work and church.

The most chilling thing for me was that, at the same time, the president was speaking to a rally in South Carolina, telling them that covid-19 in the US was a hoax perpetrated by Democrats.

This is disconcerting and irresponsible and shows how disconnected the president is from the reality that the country is facing.

To be clear, I am not a paranoid person regarding disease. I’m not running around in a mask and gloves in fear of covid-19. I am, however, vigilantly watching the public health news and, as recommended, making plans for possible cases and restrictions on travel and being out in public in my region.

While I hope and pray for safety and good health around the world, I want to be prepared to stay as safe as possible if this epidemic does become a pandemic. In the US, I hope that people will make sure that the information they get comes from a reliable source.

Sadly, our president is not a reliable source.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is base the post on a word that contains “ect”. Join us! Find out how here:  https://lindaghill.com/2020/02/28/the-friday-reminder-and-prompt-for-socs-feb-29-2020/

2019-2020 SoCS Badge by Shelley!
https://www.quaintrevival.com/

all stuffed up

There is so much going on and so many posts I wish I were writing – if only there was a way for my thoughts to magically appear in writing.

I think that common cold viruses must be regional because, when we visited London, all the people in our family who have been living in the US got hit especially hard.

My spouse B and I have had to cancel much of what we had hoped to do this week and are nowhere near full operational capacity. We are planning a simple Christmas this year, which is good because there isn’t time or energy for more. I’ll try to get some catch-up posts in as I can.

JC

IC Awareness Month

September is IC Awareness Month, so, as someone living with IC, I am doing my part to spread awareness.

IC stands for interstitial cystitis, which is also known as bladder pain syndrome or hypersensitive bladder syndrome. Symptoms, for most, include pelvic pain or pressure and increased urinary frequency/urgency. It affects millions of people in the US and millions more around the world, although estimates of prevalence differ. Part of the reason that statistics are hard to come by is that many people see multiple doctors for years before they are correctly diagnosed. This delay is further exacerbated by the fact that IC is more common among women. As with other ailments among women, some patients have been told their symptoms are “all in the their heads.”  Others have been misdiagnosed with reproductive system problems. Among men with IC, the misdiagnosis is usually chronic prostatitis.

Another problem with getting a correct diagnosis is that there is no definitive test for IC. One subtype of IC, accounting for about 10% of cases, causes lesions in the bladder, which can be seen during cystoscopy, but the other types do not have that straightforward a presentation. Diagnosis is also complicated by the fact that no one knows what causes IC. It behaves somewhat like an autoimmune disorder and also seems to be related to the nervous system. Research is ongoing. Many patients with IC also have periods where the symptoms flare up and other times when they are lessened or absent. This can also be a factor if you have a long wait to see a specialist; your symptoms may have disappeared by the time of your appointment.

I have one of the subtypes of IC in which its symptoms occur in conjunction with other pain syndromes, such as irritable bowel syndrome, endometriosis, and vulvodynia. This can complicate treatment because there are so many different factors involved. Some people with IC, like me, have success with medications. Once symptoms have calmed down, the medication regimen may be ended and other methods, such as dietary changes and stress reduction, may be able to avert flares or, at least, keep them manageable.

One of the things that I need to avoid is acidic foods. I do have a dietary supplement that helps with eating acidic foods, including fruits, although I still avoid citrus. When I make tomato sauce, I put in a bit of baking soda to counteract the acidity. Bonus: it’s fun to watch the sauce foam and bubble! It can be difficult to find things to drink beyond water and milk. I never was a coffee and tea drinker, so I didn’t have to worry about giving those up. I can’t have anything carbonated, so no sodas or sparkling water. (Some people with IC can drink certain varieties of coffee, tea, and soda; sometimes, trial and error is needed to figure out what works for an individual.) My new splurge drink is Hint, fruit-flavored water without added sweeteners or calories. It’s fun to have another option.

The most difficult thing for me to avoid is chocolate. I can have white chocolate, although I need to shop carefully as some of it is just bad. It is the cocoa component that is the culprit with IC, causing a histamine reaction in the bladder. I admit that I miss milk and dark chocolate, and, especially, hot cocoa, which I used to make with cinnamon and ginger. Every once in a while, I will eat a bit of chocolate. I’ve found if I eat just a little, I can manage the flare that will follow, but usually I am good and avoid it completely.

If you think you may have IC, bring it up with your doctor. My doctor recommended that I see a urogynecologist, who was able to diagnose and treat me properly. There are treatment options out there, which differ depending on the subtype of IC you have. Some types are able to be cured with the right therapy, while most others can learn to treat and manage their symptoms.

Don’t let anyone tell you that your symptoms are all in your head! Don’t try to self-treat because of embarrassment or other factors. You can find more info about IC from the Interstitial Cystitis Network, which is one of the sponsors of IC Awareness Month, or from reputable medical websites.  The stress of feeling alone with your illness can make it even worse, so reach out.

One final thought:  Please keep in mind that IC and many other illnesses are invisible. This does not mean that they aren’t causing pain or other symptoms. Just because someone “looks fine,” doesn’t mean they are fine. If someone you know has or may have an invisible illness, treat them with kindness and understanding. Help them find the medical help they need. Support them as they deal with their illness. It will make a difference in their lives.

 

JC’s Confessions #4

On The Late Show, Stephen Colbert does 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

In the months that my mom was in the skilled nursing unit, she had a couple of neighbors who used to shout out “Help me!”over and over to anyone passing by their rooms. There were also a handful of residents who would occasionally wander into her room and mistake my dad for their husband or me for a daughter or a staff member.

It was hard for me not to get annoyed sometimes, even though I knew that these other residents were ailing and exhibiting dementia symptoms.

As I reflected more about this, I realized that my reactions were tied to feeling helpless. I couldn’t help what was happening to these other residents and I couldn’t help what was happening to my mom.

As a caretaker, one is always trying to make things better. It hurts when that isn’t possible.

The wilds of October, so far

My Facebook page of Top of JC’s Mind is helpfully reminding me that I haven’t posted in 13 days, and that post was a so-far-unsuccessful plea to get from 99 to 100 likes. My last actual blog post was on October 6, so – deep breath – here is an attempt to catch up a bit.

My mom, known here as Nana, has been under hospice care since summer of 2017 due to congestive heart failure. There have been quite a few ups and downs over that time – and quite a bit of red tape. Re-certification reviews are every two months, so, one finishes and it is time to start on data collection for the next.

As it happened, Nana’s current certification was due to expire on October 15. I was due to be out of town from the third through the ninth and thought that the re-certification decision had been deferred until the tenth; instead, the medical director decided on the fourth that Nana would no longer be covered by hospice as of the sixth. Hospice would continue to “follow” her until another suitable, safe situation could be arranged, but we were not given a date.

The situation was complicated by the fact that Nana had been in residence at Mercy House, which only houses people under the care of our local hospice, since May and could not return to her former home in an apartment with my dad, known here as Paco, at Good Shepherd Village (GSV) because her care needs were too great. Anticipating the possibility that Nana might be decertified, we had her on the waiting list for the skilled nursing unit at GSV for weeks, but they had no availability.

As soon as I returned home, it became obvious that we wouldn’t be able to wait for a room at GSV. On Wednesday, the 10th, my first day back, we were offered a room at GSV’s sister institution in the rehab unit, which we basically had to take.

I will not vex you with the details of the bureaucratic wrangling I needed to do to get the move accomplished by Friday. I will, however, say that I was disappointed that I was caught in the middle of so much red tape when so many people in the official-dom had been assuring me for weeks that transferring between institutions would be smooth and handled by the professionals rather than family.

Mom had her evaluations and was starting in with physical and occupational therapy, when, on the following Tuesday, we got word that space had opened up for her at GSV. So, we packed up her room and, on Wednesday morning, she moved again to what should be her permanent home.

We have her settled in her new room, which has a beautiful view of the valley. There are favorite art pieces, cards, and photos on display and a new sized-for-her recliner lift chair that we bought. She is making progress with her therapy and can walk short distances with a walker and a companion nearby.

I wish I could say that her heart function is improved, but that is not possible. Our goal remains to keep her as active as possible for as long as possible and to keep her pain-free. She is under palliative care protocol, similar to hospice but without the pesky obligation of trying to guess life expectancy.

The best aspect of her new home is that she and Paco are back under the same roof, albeit in separate wings. Paco can hop on his scooter and, using the turtle (3mph) rather than prohibited rabbit (5mph) setting, navigate the apartment building halls, Village Center, elevator, and Health Center halls, and be with Nana in just a few minutes. They have been married 64 and a half years, so the ease of being together is much appreciated.

We are trying to establish some new schedules and routines for Nana and Paco after so many changes in such a short time. If I am lucky, I will be able to work through my backlog and get back to writing and posting a bit more. I know better than to make promises, though. The last few years have taught me over and over to expect the unexpected and I think I may have finally learned that lesson.

a rainbow at Mercy House

On Wednesday evening, I drove to Mercy House, the hospice residence where my mother lives, during a sun-shower after a heavy downpour. Given the time of day and the moisture in the air, I started to look for a rainbow. When I turned east, a full rainbow appeared before me, one end of it resting on Mercy House.

What I didn’t know at the time was that Phatar, a twelve-year-old who was also in residence at Mercy House, had become unresponsive and would pass away the following day, surrounded by the love of family, friends, and caregivers.

On Friday morning, the door to Phatar’s room was open, his bed made with the quilt pulled up. Near his pillow was a little memorial with a flower, the United States flag that had been on his door, a little poem that had been posted in his room, and his handprint in green paint on white canvas.

This morning at church, Father Clarence told Phatar’s story during the homily, about his cancer diagnosis, about his final months at Mercy House, about his desire to receive Jesus in the Eucharist and his baptism, and the comfort that brought him in his final weeks. There were smiles and tears as we listened.

Our mix of emotions in reacting to death is always complex, but I think most people have a particularly strong sense of sadness at the death of a child. It has also been sad watching Phatar’s mom these last months, suffering through every parent’s nightmare of the illness and death of their child. Still, I am grateful to have met Phatar and to know that he is now at peace.

The next time I see a rainbow, I will think of him.