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.

Christmas tree 2020/21

It’s January 12th and our Christmas tree is still up.

We are lucky that fresh-cut Canaan firs are so resilient. It is not shedding needles and is still exuding a lovely scent.

It is still adorned with our usual assortment of ornaments – glass, ceramic, wood, metal, cloth – many of which were gifts or handed down to us or collected on our travels. There are LED light strands, which are great because they don’t use much energy, don’t get hot, and don’t dry out the needles. The angel I made with the help of a friend years ago is perched on top.

Ordinarily, we decorate our tree in mid-December and take it down at Epiphany. This year, we put it up in early December. It was the first time in several years that I actually wanted to decorate the tree, after several stressful years, although I admit that my energy to do so flagged mid-way through, sapped by memories of loss.

Still, it was nice to have it all decorated and glowing near the living room window.

And then, an avalanche of things happened.

Everyone knows about the horrific toll of the coronavirus around the world and particularly in the United States. The single day death toll topped 4,000 deaths for the first time on January 7th. More virulent strains are spreading. The vaccine rollout is too little, too late to tamp the spread for the winter, although it is offering some hope.

Everyone also knows about the precarious and dangerous political situation in the United States. The breach of the US Capitol by insurrectionist followers of DT and the destruction, violence, injury, and death they caused, coupled with the craven complicity/opportunism of dozens of Republican members of Congress, have thrown us into the most dangerous situation of my lifetime. I think the best course would be for both DT and Pence to resign, giving Nancy Pelosi the powers and protection of the presidency for a few days to try to stabilize the government before the January 20th inauguration. I know this is another exercise of my penchant for political fantasy, but I think it is perhaps the least dangerous of the possible paths, given that both Pence’s and Pelosi’s lives were threatened by the mob on January 6th.

While both of those situations are sapping my brainpower and motivation, the biggest factor in not taking down the tree is that I am spending a lot of time in trying to get my father settled into his new unit in assisted living without being able to physically go into the building to tend to things due to COVID restrictions, while dealing with cleaning out his apartment in independent living and handling all the nuts and blots of changing contact information with all the businesses, doctors, insurance, financial institutions, etc. [I have also been dealing with the aftereffects of my second shingles vaccine, which, while not as severe as after the first, are still bothersome.]

I was so proud of what I accomplished yesterday and had hoped to get more done today. Instead, I’ve had to spend most of the day so far on the couch. I can’t even wrap my head around making the string of phone calls waiting for me.

Tomorrow, I’ll need to get back at it, especially with the apartment packing and such. B, T, and I are hoping to have everything cleared out by the end of the long weekend for MLK Day.

The tree?

Maybe we’ll get to it over the weekend, too.

*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2021/01/12/jusjojan-prompt-the-12th-sing/

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/

January first

I’m generally not a big celebrator of New Year’s Eve/Day, looking at it as just the next day rather than a new start. This year does feel a bit different, as I am grateful to have made it through the tumult of 2020 and have hopes for 2021 for improvements in the governance in the US and for vaccine distribution and better public health policy to finally start to tamp down the pandemic by spring.

Still, personal circumstances make it seem less like a new start and more a continuation of existing issues. My dad, known here as Paco, is expecting to move from the rehab unit of his senior community into the assisted living unit next week. I am busy with paperwork and packing to facilitate the move. It’s awkward because, with COVID restrictions in place, family is not allowed into the health care building where the assisted unit is, so we can prepare and pack but can’t help with the actual moving, unpacking, and arranging.

Ordinarily, I would be gearing up for Linda’s Just Jot It January and planning to post every day for the month. I cannot wrap my head around posting every day this January with so much going on, including the fact that I should get my second dose of shingles vaccine this month. The first dose made me sick for a week, so I expect a similar experience with the second dose. I’m not looking forward to that, but I’ve had shingles before and am anxious to do everything I can to avert a repeat occurrence. When I do post in January, I will link to #JusJoJan, but I am giving myself permission to post sporadically rather than consistently.

I am somewhat uncharacteristically struggling with words, both spoken and written. I think I am overwhelmed enough and exhausted enough that my brain can’t settle down to easily arrange my thoughts into cogent language. It’s not good for my blogging or poetry and it’s disconcerting for conversation, especially when I have to have so many phone calls and conversations to get things arranged for Paco’s care. I’m managing, but nowhere near the level I want to be.

I’m asking, once again, for your patience as I slog through this.

I should close now and make myself copy dates and commitments into my 2021 calendar. It’s a dreaded task every year and 2021 is no different in that regard.

On pandemic church attendance

Back in the days of the anti-fracking battle in New York State, I wrote tons of comments to articles in the press. I still occasionally write a comment on a topic of interest. The following is a comment I submitted to an op-ed by Wilton Cardinal Gregory, Archbishop of Washington, DC, in The Washington Post, entitled “Praying apart isn’t the same as praying together. That’s why we sued D.C.” Because the article is behind a paywall, I will synopsize. Cardinal Gregory had sued the city of Washington, DC “to protect the free exercise of religion in the nation’s capital.” There had been a limit of fifty people in religious services, (which was subsequently eased by Mayor Muriel Bowser on December 16th). He pointed out that more than fifty people were allowed in stores and other venues.

My comment:
I am Catholic and someone who spent years in liturgical service as a musician and a liturgy planner. I was consistently attending mass on weekends and holy days, but I have not attended in person mass since mid-March, choosing instead to participate via televised or online services for safety’s sake.

I don’t think that restrictions on number of people in church attendance is at all an attempt to limit free exercise of religion. Being in church for a service is not like being in a store. In stores, people are mostly  silent, not near the same people for any length of time, and spending shorter amounts of time in an enclosed space. In churches, people are in one spot for an extended period, usually about an hour. They are speaking and singing; singing in particular is known to spread droplets much further than six feet. Masks do help prevent virus spread, but they do not do so 100%, so singing presents an additional risk.

Church attendance is more closely analogous to going to an indoor movie or concert. In my state, neither of those activities are allowed at all. Places of worship are allowed with restrictions on numbers in attendance. I think that rather than being overly restrictive, governments have been trying to help faith communities gather in person rather than being totally virtual in worship, while trying to keep risk relatively low.

The virus does not care whether people are in a store or a church or a home or a restaurant. It’s up to all of us to protect ourselves to the extent possible. When government officials are following science in their rules, we should accept that and not think that they are infringing on our rights rather than protecting public health.

another day

So, as I write this, it is December 25th which we celebrate as Christmas, but 2020 is very different.

I haven’t been able to post much this month, in large part because we have been dealing with some health difficulties with my father, known here as Paco. He spent five days in the hospital and, earlier this week, was admitted to the skilled nursing and rehabilitation unit in the senior community where he lives.

Because of COVID restrictions, no visitors are allowed but we have been in touch by phone. Before he went to rehab, we did have a family early-Christmas celebration, but we sent a couple of small gifts to his room so he would have something to open today.

We hope to videochat with daughter E and family in London UK this afternoon, which will be evening there. They have already posted photos of granddaughters ABC and JG in their holiday attire. Last night, we were able to watch the Christmas Eve mass from their church. While it is sad that we were not able to see them at all in 2020, technology does help.

Spouse B, daughter T, and I are spending the day at home with scaled-back gift exchange and lots of our family favorite foods, fresh-baked date nut and cranberry breads for breakfast and lasagna from Nana’s recipe with homemade braided herb bread for dinner and apple-blackberry and an outrageously good brown-sugar and maple pecan pie for dessert. B enjoys cooking and baking special meals, so he is taking the lead with all this while I act assitant. It’s nice to have familiar things in such a topsy-turvy year.

Unfortunately, the huge snowstorm we had last week that dropped forty inches (one meter) of snow on us has set us up for flood warnings today. We got about three inches (8 cm) of rain yesterday and overnight, which, coupled with at least another couple of inches from snowmelt, has led to flooding. The Susquehanna is expected to crest tonight at major flood stage level in our town. While our home should be okay, we are concerned for our neighbors who live closer to the river.

I know for many Christians around the world, this Christmas is very different than the usual celebrations, but the underlying message of peace and good will to all is still there to bring comfort to us in these troubled times. I share wishes for peace and good will, for good health and love with all of you; whatever your personal faith or philosophy might be, these gifts are universal.