Since I was a child, my favorite color has been blue.
The color of my eyes and my mom’s and dad’s and sisters’.
The color of the sky at midday.
The color of some of my favorite clothes, although not jeans, which I never learned to like wearing.
I still like blue. I’m wearing it today.
But today, thinking of blue makes me think of how I’m feeling.
Most of my #SoCS posts in recent weeks have been giving updates about my father, who is struggling to recover from falls, broken bones, infections, and we aren’t totally sure what else, while dealing with dementia and the wear and tear of ninety-six years.
I am doing everything I can to keep him as comfortable and content as possible and he is doing much better than he was ten days ago. We finally have the rest of his things in his skilled nursing/rehab room.
His Irish-themed banner and plaque are on his door, which makes it easier for him to find his room in the hall of similar-looking doorways. We finally got a temporary phone number working, although he needs help to answer calls and we aren’t sure if he can re-learn how to dial.
It’s just hard for me not to feel blue. As much as I understand that this is just the journey we have been given in this last period of his life and that we are doing everything we can for him, I can’t help but feel sad.
All the time.
It’s hardest when I am with him, although I have a really good game face and manage to be cheerful – or seem cheerful – when I am interacting with Paco. He is sleeping quite a bit, which is probably good. Most of the time, he isn’t really aware of how much he has forgotten, so he is not blue, which is a blessing.
The above inadvertently artsy shot with sunbeams is of roses growing in our back yard. This rose is a daughter of a rosebush that grew near my mother’s childhood home in Hoosac Tunnel, Massachsuetts. You can read more of the backstory in this post which itself includes a personal essay from before I started blogging.
This rosebush is the subject of the one poem that appears in both my chapbook and collection manuscripts, which I can’t share here because it is currently unpublished. It tells the story of the revival of this daughter bush from near death and ends during my mother’s final illness.
We have just passed the second anniversary of her death. The rose bush apparently liked the snowy winter and slowly unfolding spring this year and has more blossoms than I have ever seen. It has also grown very tall, as you can see in the photo below. For reference, I’m 5′ 1.5″ (1.56 meters), so the rose bush is probably close to seven feet (2.1 meters) high.
Because this is an heirloom close-to-wild rose rather than a hybrid, it has a very strong scent. With so many blossoms this year, the smell is heavenly.
There is an old song “What a Difference a Day Makes” but today I’m thinking about what a difference a year makes.
Two years ago this spring, my mom, known here as Nana, was living in the skilled nursing section of the senior community where she and my father, Paco, had lived for ten years. She was under hospice care as she was nearing the end of her battle with heart failure. My father and I visited every day for hours with frequent visits from my daughters and granddaughter ABC, who were living with us at the time. My out-of-town sisters were able to come to visit often, too.
Nana passed away in May 2019, a few days after her 87th birthday. We were able to hold her funeral in her parish church with a visiting hour before with friends coming to comfort us. There was also a gathering at her and Paco’s senior community.
Last spring, we were all in COVID lockdown. Visiting nursing homes was totally shut down with very limited exceptions for end-of-life situations. I often thought of what that would have looked like for us, if Nana had been facing death in spring 2020 rather than 2019. We would have lost those last few weeks with her, which were painful but also filled with precious moments. We were able to bring her flowers, including her beloved lilies-of-the-valley which blossom in May, just in time for Mother’s Day and her birthday. One of the last things she was able to eat was a little fruit tart I had brought for her birthday. I helped her by cutting it and fed her as she had me when I was a baby…
In 2020, we would likely not have been allowed to visit until the very end when she was unconscious. The church was totally closed, so there would have been no funeral, not even for family.
It was hard last spring, too, because we could no longer visit Paco every day in his apartment. Although visits to independent living apartments were not totally forbidden, they were supposed to be limited, with some masked outdoor visits preferred over anything indoors. My sisters had planned to visit for Paco’s 95th birthday in March but that had to be postponed. Little did we realize at the time that that postponement would turn into cancellation.
That brings us to this spring, which is just getting underway here with some of the early bulbs flowering and the first trees starting to bud. Paco is now living in assisted living which is part of the health care center. While visiting and gathering there are still limited, my younger sister and I were able to visit him for half an hour in his apartment on his birthday and he was able to share a large birthday cake we provided with the other residents and staff on his unit later in the day. Later this month, my elder sister will be able to visit in person for the first time since last summer. She lives out-of-state so hasn’t been able to travel to New York without prohibitively lengthy quarantine, but now, with vaccines available and changes in state policy, she will finally be able to see Paco again.
We have no idea, though, if or when daughter E and granddaughter ABC will be able to visit. They moved permanently to the UK in fall 2019, joining son-in-law L in London. They have since been joined by granddaughter JG, who recently had her first tooth break through.
Spouse B, daughter T, and I would love to think that this spring we could jet off to London to meet JG in person for the first time, but it isn’t possible. Maybe this summer? It depends on conditions with the pandemic and travel restrictions.
Will we get to hold her while she is still a baby or will she be an on-the-move toddler by that time?
Will Paco ever get to meet her in person? For the UK family branch to visit the US is much more complicated and we have no idea when that will be feasible. We also, sadly, don’t know how things will go with Paco’s cognitive decline. While sometimes he remembers names of family members, sometimes he forgets them.
Sometimes, he forgets that he has great-grandchildren at all.
In 2019, I knew that spring 2020 would be very different because my mother would not be there. I could not have imagined how different 2020 would turn out to be.
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.
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.
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.”
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.
Over the past few days, I have started to work on my Christmas card list.
Well, Christmas, Hanukkah, solstice, Kwanzaa, New Year’s, or whatever anyone is celebrating list…
Sending greetings this time of year is one of my highest priorities of the season, so I am determined to get things in the mail to my list. There are a number of people that I am only in touch with at this time of year – and a number that I haven’t seen in person in decades – and some that I haven’t heard from in decades, but it is important to me to send something to them.
These past few years haven’t been exemplary for me, though. There were years that I sent letters only instead of cards because I couldn’t bring myself to the extra work of choosing and signing cards. I’ve accepted help from family members with addressing and sending. Last year was probably the most difficult. I couldn’t bear the thought of following up “Merry Christmas! Happy New Year!” with “Not sure if you heard the news that my mother died.” I wrote a letter to my friends in November and left B and T with the task of sending cards to the rest of our list.
But this year, I’m trying to get back to something closer to what I used to do, choosing cards, signing and hand addressing envelopes, adding Christmas seals, stamps, and return address labels, enclosing a letter and photo when appropriate.
So far, I have about half the cards written and envelopes prepared, but none of the enclosures yet.
I did do a step that I have skipped for several years, going through last year’s cards received and marking them in the appropriate box on my list, which is written in a special holiday card list booklet. (Actually, this list has also become my de facto address book. I used to keep a separate address book but haven’t updated it in years.) This has been poignant because many of the notes on the cards include condolences for my mom and often reminiscences on the loss of people’s own mothers.
I haven’t quite figured out what to write about 2020. How to sum up a year that has been marked by such universal fear, loss, grief, and sadness, but that has also seen such blessings in our lives, such as the fact that B’s job is able to carry on from home and the safe arrival and thriving of granddaughter JG, even though we can’t travel to London to meet her.
I’ll work on it.
After I’ve gotten the rest of the list finished with cards chosen, signed, addressed, with envelopes open and waiting.
Facebook often presents users with the opportunity to repost something from prior years. Today, it suggested this photo from two years ago:
This was our last Thanksgiving with my mom, known here as Nana. She passed away from congestive heart failure the following May. Daughter E and granddaughter ABC moved to London, UK, that October when E’s spousal visa finally came through. ABC is now in nursery school and big sister to JG, whom we planned to meet this month until England went into a new pandemic lockdown phase.
It’s a lot in two years.
And it seems like it’s been longer than two years.
Three days ago, one of my poet-friends posted a photo from the Tupelo Press/Studios at MASS MoCA residency from which the Boiler House Poets Collective sprang five years ago. In the comment thread that followed, someone asked if anyone had written about it, which prompted me to re-read my blog posts from the residency. This post links to most of them. It was interesting to read my real-time take on what was happening, although I did temper the amount of anxiety I expressed somewhat. It was nice to see that I accomplished more than I remembered and good to be reminded of our various sessions with our poet-teachers and the bonding among our original nine poets-in-residence.
We have gone back to North Adams for a reunion residency every autumn, until being derailed this year by COVID. We have a reservation for both 2021 and 2022, though, which is tempering the sadness at missing this year a bit.
And, yes, those five years feel longer than they are, too.