SoCS: last year and the year before

There is an old song “What a Difference a Day Makes” but today I’m thinking about what a difference a year makes.

Or two.

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.

Or 2021.

I dare not project to spring 2022.

*****
Linda’s prompt for Stream of Consciousness Saturday this week is “difference.” Join us! Find out more here: https://lindaghill.com/2021/04/09/the-friday-reminder-and-prompt-for-socs-april-10-2021/

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.

a May flower

This spring has been slower to warm than usual. Most years, we have lilies of the valley by Mother’s Day or by Nana’s birthday on May 16th at the latest. Lilies of the valley are the birth flower for May and we always picked bud vases for her while they were flowering.

Years ago, B and I transplanted a few pips from our childhood yards in New England to our home in New York. Lilies of the valley “spread aggressively” as horticulturists say and we now have a patch at least 25 square feet (2.3 square meters).

I’ve written previously about some of the hidden blessings of not having to deal with the complications of 2020 last year as we spent our final months with Nana. We were able to bring her beautiful, fragrant bouquets of lilies of the valley for her last birthday, which would not have been possible with the later spring blossoming this year and the restrictions on visiting skilled nursing facilities.

Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Nana’s ashes are in an indoor niche at a memorial park in our town where fresh flowers are not allowed. I’m hoping someday to find some beautiful artificial lilies of the valley to leave there for her, so there will always be a bit of spring and her favorite May flower nearby.

a very different Mother’s Day

Today in the United States, we are observing Mother’s Day, which was originally begun as a call by women for peace, but that is another story.

I have been dreading Mother’s Day this year because it is the first since my mom’s death last May.  She was under hospice care in the nursing home, but we were still able to be with her and bring cards and flowers and treats. I keep thinking about how different it would have been this year with pandemic protections in place. No visiting is allowed. I know that is necessary to keep the virus away from such vulnerable people, but it must be so difficult today for all those moms, grandmothers, and great-grandmothers to be separated from their loved ones.

I am grateful to have daughter T here with us. We got to videochat with daughter E and granddaughter ABC. ABC showed me a special drawing that she and her dad had made for me for Mother’s Day. They were able to scan it and B printed it for me, so now it is on the mantel. It was fun to see ABC dancing about the living room, to hear her sing and “play” the piano, and hear her ever-expanding vocabulary. She will turn three next month. This is also the first Mother’s Day since they moved to London after E’s spousal visa finally came through. Though I wished E a happy Mother’s Day, the UK celebrated weeks ago.

It has also been unseasonably cold here. We have had snow this weekend, which is late in the spring for us. No outdoor flowers for Mother’s Day gifts this year!

Because of my mood and the pandemic restrictions, our celebration here will be low-key. B made Chelsea buns for breakfast, which were amazingly delicious and hot-from-the-oven. For supper, he is making lasagna, using the recipe that my mom always did. It is definitely the comfort food that I need today.

It was also comforting to watch mass recorded from television. The one I chose was my mother’s favorite when she was homebound for so many months. Of course, they mentioned Mother’s Day and included prayers for mothers. It was another way to remember my mom on this special but difficult day.

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.

87

Nana's 87th birthday
Lily of the valley, with Paco’s card to Nana and birthday card made by artist-friend Jim

Today is my mom’s 87th birthday.

Because her heart failure symptoms cause her to be sleepy a lot of the time, it is difficult to predict when she might be alert, so we keep celebrations ad hoc and catch bits of time with her as circumstances allow.

This morning, I picked her a few lilies of the valley from our (rapidly spreading out of control) patch. The original pips came from the yard of my childhood home in Massachusetts and from the yard of B’s home in Vermont, only a few miles apart. Lily of the valley is the birth flower for May and I have often picked some for Nana’s birthday. Our spring this year has been chilly and damp, so they have just begun to bloom with only the very bottom bells open, but I picked some regardless and will bring a few more when they open more fully.

On my way up to the skilled nursing unit of my parents’ senior living community, I swung by Wegman’s grocery store and picked up an individual size fruit tart. Nana would often buy large ones for special occasions, so I thought she might enjoy a little one for her birthday. I was pleased that, though small, there was a nice variety of fresh fruit over the custard, a large halved strawberry, a piece each of pineapple and kiwi, raspberries, blueberries, and blackberry. Nana was quite sleepy this morning, so I put it in the refrigerator with her name on it so she can enjoy it later today, or tomorrow or the next day, depending how she is feeling.

I brought her a card, too, which had bleeding hearts, which are also in bloom now, on the front. She has lots of cards from family and friends, including a packet of cards from people at her church.

A bit later in the morning, my daughters E and T and granddaughter ABC arrived. Despite ABC’s careening about the room, giggles, and squeals, Nana slept a good share of the time that she was there, but there were times that she was awake for kisses and a bit of lunch, some of which she generously shared with Ada. Her lunch tray arrived with a bonus, a large vanilla cupcake with white frosting and decorations. Nana decided to send it home with us instead of eating it herself. After all, she does have a fruit tart waiting for her, as well as some coffee ice cream sent over by a friend. When she is ready for one or the other of them, Paco will hop on his scooter and fetch them from the leisure room refrigerator. Of course, Paco got some kisses from ABC, too.

Both of my sisters called while I was there. My older sister just returned home from a few days of visiting and my younger sister and her family will arrive for a short visit this weekend. The main reason for the trip is my niece’s commencement ceremony in Cortland. She will be a newly minted teacher, with a job as a kindergarten teacher and a master’s program in New York City all lined up. Woo hoo!

B and I made another quick trip up for a visit in the evening, bringing another card that had inadvertently been left at home in the morning and some of Nana’s favorite toiletries.

We were grateful that we were able to celebrate Nana’s 87th birthday with her, or, as Paco says, the beginning of her 88th year. Last year, we celebrated her birthday at our local hospice residence. We didn’t think that we would be granted another whole year with Nana.

We all love that we have had this time with her.

hospice again

After posting every day in January, I haven’t been posting very much since. Unfortunately, my mom, known here as Nana, over the last few weeks has had increasing symptoms from her congestive heart failure. We have been able to ameliorate some of them, but she is sleeping more and eating less, having more trouble walking and getting short of breath more frequently.

Last week, Nana was approved to go back into hospice care. They will become part of her care team at the skilled nursing unit, so she won’t need to move again and so my dad can hop on his scooter and visit her whenever he likes. [Backstory is that Nana was under hospice care for fifteen months and then de-certified in October. She moved into skilled nursing at their continuing care community, as she could not stay at Mercy House, which is only for those in hospice care.]

We are hoping for as much pain-free and alert time as we can get in these coming weeks. Thank you for all the positive thoughts and prayers you have sent. They help us to stay grounded in this difficult time.

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.