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.

some assembly required

As I wrote about Saturday, I’m not doing what I expected I would be today, arriving in London, UK for a month, with two weeks in quarantine and two visiting family, including meeting our newest grandchild JG.

I had spent weeks making arrangements for the trip, letting lots of other things, such as writing blog posts, slide. Instead, I spent a lot of time on the phone and online covering personal and family obligations for the four weeks of the trip plus the two weeks of quarantine required by New York State when we returned. I, along with B and T, also spent hours and hours organizing and cleaning the house to be ready for my sisters to stay here to be on hand for our dad, known here as Paco, while we were away. I had planned time to work on my poetry collection while we were in quarantine. I also had some reading and blogging work lined up.

And now, I need to figure out how to organize myself for the next six weeks.

And in general.

Again.

Still.

In my experience, the thought that I can organize my life and have things go according to plan is an act of hubris or, perhaps, folly. Over these last decades, my life plans have seldom unfolded as envisioned. Things happen. Priorities change. Plans get abandoned or put on hold. This is not a complaint, but an observation.

I know I have limited control, yet I somehow feel the need to make a plan when I sense there is a turning point, or, at least, a juncture when circumstances have changed.

A consequence of the household re-organizing we did to get ready for my sisters to come house-sit is that, for the first time in almost four years, B and I have moved back into the master bedroom, which we had given over to daughter E when she moved back home for almost three years while waiting for her spousal visa to be approved in the UK. The nearby room that had served as ABC’s nursery has now become B’s at-home office; his office building closed in March due to the pandemic and no one knows if or when it will re-open. My desktop computer is now in a guest room upstairs, opposite where T’s room is and has been throughout all the rest of the configuration changes. The living room, dining room, and kitchen are more organized than they have been in years.

I suppose the first part of my plan should be to keep things clean and organized, which would be an ongoing chore as I don’t enjoy cleaning and organizing. One of the things that made the task of getting ready to leave so daunting was the psychic strain of dealing with sorting and packing cards and other memorabilia from the last few years which included my mother’s final illness and death and E and ABC living with us. In truth, I will most likely never have a minimalist house, especially as we are storing things from both my and B’s parents’ homes and our adult daughters’. Some of it may migrate to E and T eventually…

But I digress. There is some hope that I can use our new configuration to my advantage, such as getting used to writing sequestered with my desktop rather than my laptop in the midst of the household.

The larger issue may be to de-clutter my mind. Over these last few years, when intergenerational care responsibilities have been my primary focus, I have gradually been shedding more and more of the things that used to occupy my time, such as extensive research and commentary on environmental/social justice issues and on women’s equality in the Catholic Church. I still care about those things and keep up on them to an extent, but I have let my membership in a lot of the related organizations lapse as I attended to in-person responsibilities. Admittedly, my email inbox is still overflowing with news – and requests for money – from too many entities, but I’m hoping to whittle down further after the election to free up more time and brainpower for other things.

It’s not that I don’t still care about these issues. I am heartened by the convergence of social and environmental justice issues that has happened this year and I will continue to lend support, but I will do it through a few select organizations with which I have a special connection, such as NETWORK, the Catholic social justice lobby that I joined in observance of the Jubilee in 2000. I am also heartened by the witness and energy of the Millenials and Gen Z in this convergence of social, racial, gender, economic, and environmental justice and will gratefully support their leadership with what experience and wisdom I can offer.

I’m hoping that 2021 will bring a new administration and Congress to Washington that will restore functionality and care for the common good to our national government. The last four years have been disturbing and exhausting and keeping up with the news has become an obsession and a time sink. I’m hoping to get back to a place where it doesn’t take so much energy to keep up with the news so that I can concentrate on writing and other mental work.

One of the very immediate conundrums is that I have to wrap my head around being at home on election day this Tuesday. We voted early last Monday and I had myself mentally prepared to be in London, five hours ahead as the election results began to come in. Instead, I think I will be staying up late Tuesday night into the wee hours of Wednesday, as results begin to be reported. We all know that the vote count will take several days, but the early numbers may allow some states to be called on election night. I’m hoping that everyone – the politicians, pundits, and public – will stay calm and that there will be an orderly transfer to a new administration and Congress.

Personally, I’m hoping that I will be able to spend more time writing. I promise that will include some blog posts, although I’m sure I will never be the on-topic, on-schedule blogger-type. I most want to write more poems and do revisions to produce a new version of my collection that centers on the North Adams MA area where I grew up and to which I have returned as a member of the Boiler House Poets Collective. Optimally, I’d like to have it together by spring so that I can do a manuscript review with my poet-friends. I also need to do some more submissions for my chapbook. Rejections have been coming in and two contests that I had planned to enter this fall have been pushed back, so I will need to hunt out more opportunities. I should also send out some individual poems to journals; I’ve been ignoring this for the most part over the last several years but need to get back to it.

I suppose I’d better plan some time for writing holiday cards and letters…

I also need to factor in time for essential shopping and errands for our household and for Paco. The pandemic and the supply chain problems it has caused have made shopping a major undertaking. It has also changed the way I help Paco, as I try to minimize time indoors his senior community’s building. Eventually, when there is widespread vaccine use, I’ll be able to resume regular in-person visits, but for now I am trying to deal with most things by phone and quick drop-offs.

I don’t know whether or not I can make some semblance of a schedule for myself or a plan to better work toward these goals. I had some hope as I started to write this post yesterday, but now I have all the uncertainties of the election, the pandemic, and personal life swirling about in my head.

But, hey, here is a long blog post about to be published, which is in line with my goals, so….

Progress?

Stay tuned.

And send good vibes.

a year ago today

Today is the first anniversary of my mom’s death. She was known as Nana here at TJCM and she appears in many posts from the past years.

Her death followed a long period of decline from congestive heart failure. In some ways, it seems that I lost her much longer ago because, as her illness progressed, she was not the same mom, the confidante with whom I spoke nearly every day of my life. She also wasn’t able to keep up her active social life in the senior community where she and Paco had lived since its opening ten years ago. She had a special gift for conversation, for listening attentively, and remembering each person’s stories. She also kept up with current events, so our conversations were often wide-ranging.

With so much changed in the world these last few months, I’ve often felt thankful that it was last year rather than this that we were dealing with Nana’s final months. Nana spent her last months in the skilled nursing unit of their senior community. Paco and I were able to visit as often as we wanted and my sisters came into town frequently for a few days at a time. Because our adult daughters E and T and our granddaughter ABC were in residence with us, they were able to visit often, too. This is one of my favorite four generations photos – Nana, me, E, and ABC at Thanksgiving in November, 2018.

Thanksgiving four generations

This spring, though, the skilled unit has been in full lockdown for weeks due to COVID-19. Visitors are only allowed when there is imminent danger of death. As difficult as the last few months of Nana’s life were, it would have been so much more difficult if we had not been able to be there to talk when she was awake, help with her meals, put in calls for staff when needed, and just be present. My heart goes out to all those who are residents of long-term care facilities and to their families as they continue to contend with being separated at this critical time.

I’m also grateful that Nana did not have to experience the permanent move of E and ABC to the UK. Being able to see her only great-grandchild regularly was a joy and it would have been so hard for her to lose that in-person connection. Nana was also spared the worry when the London contingent of the family were ill with probable COVID-19.

It’s hard to say if a year is a long time or a short time in these circumstances. Mourning follows its own path and this year has submerged us in a sea of societal grief and loss, as well. I only hope that I am able to be a testament to Nana’s love and care for her family and friends in these troubled times.

SoCS: Just Mercy

(I reviewed Just Mercy earlier this week, in case you want to check it out.)

When I hear the phrase “just mercy”, I think of Pope Francis. Pope Francis called a Jubilee year dedicated to mercy a few years ago and the spirituality study group that I facilitate was learning about and discussing mercy. Many people think of “mercy” in relationship to forgiveness. For example, many Christian churches say, “Lord, have mercy.” as part of their penitential rite. Francis, though, includes a broader understanding – mercy in the sense of lovingkindness. (For Catholics, this is more the sense of the corporal and spiritual works of mercy, which includes actions like feeding the hungry and burying the dead and acts of compassion like offering consolation.) I appreciate the sense of mercy as lovingkindness, as a counterweight to forgiveness in that mercy is expanded to everyone, not just those who have done something wrong.

This, to me, ties into the way we use the word justice currently in the United States. Many people equate justice with vengeance. We use phrases like “criminal justice” in a context of punishment. I think of justice as the restoration of right relationship. This is the sense of justice in phrases like “social justice” and “environmental justice.” In this context, justice is tied to care and concern for people and for all created things. This is also evident in the term “economic justice”, recognizing that it is wrong for employers to enrich themselves at the expense of their employees who are not paid a living wage.

I will end this homilette before everyone’s eyes glaze over, although I may be too late…

It’s what can happen when I am writing off the top of my mind.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is to base the post on the title of the last movie that we saw. If you would like to join in with Stream of Consciousness Saturday and/or Just Jot It January, you can get all the details here:  https://lindaghill.com/2020/01/17/the-friday-reminder-for-socs-jusjojan-2020-daily-prompt-jan-18th/

Hospice month

November is National Hospice and Palliative Care Month in the United States. Some people don’t realize that palliative care exists outside of the context of hospice. Palliative care addresses pain that affects someone from any cause. People who are dealing with chronic or severe pain can consult with a palliative care specialist, who will put together a pain management plan for them. Hospice care involves palliative care for those in their final weeks/months of life.

While the alleviation of pain is an important part of hospice care, hospice is meant to serve other needs for the person who is dying and their loved ones. There are social workers and chaplains for help with personal, social, and spiritual needs. Aides help with physical care and companionship. Volunteers come to keep the patient company or offer special skills, such as massage, to relieve pain and stress. Nurses are the driving force that coordinates care. They visit as often as needed as circumstances change.

Hospice as a philosophy is meant to unfold over the final weeks and months, but sometimes is only called in for the very last days. For decades, hospice care providers have been advocating for referrals to be made enough in advance that there is time to develop a relationship with the patient and their loved ones, so that they can provide services while the patient is still able to interact. There are, of course, instances in which that is not possible, when an accident or final illness occurs without notice, but it is still unfortunately common for primary care physicians and specialists to delay hospice referrals.

We experienced such a delay with a family member, so that hospice was only called in for the final day. Even though time was brief, the experienced nurses were able to give us the tools we needed to relieve pain and recognize the progression of symptoms when our loved one was near death.

Our experience with Nana was on the other end of the spectrum. She was under hospice care for fifteen months, was decertified and off hospice for four and a half months, and back on for her final ten weeks. Some people commented to us that we had called hospice in too early, but that wasn’t really the case. Without hospice care, Nana would have died much sooner. At least twice, they were able to treat symptoms that would have caused fatal repercussions, had the hospice nurses not been able to get them under control.

It is true, however, that there are a lot of rules, especially with insurance, about hospice care. Those rules are set up for people who have a fairly accurate life expectancy estimate, such as someone with late stage cancer or kidney failure. With something more unpredictable, like certain types of congestive heart failure or pulmonary disorder, the hospice rules requiring a certain amount of decline over a given time don’t fit very well. I hope that, over time, the rules will be changed to make hospice care more accessible.

As National Hospice and Palliative Care month comes to a close, I salute all the compassionate nurses, aides, volunteers, social workers, chaplains, and administrators of hospice. You help people at one of their most vulnerable times. I wish you the strength and peace needed to continue in such important work.

Nana

I have often written posts about my parents, known here as Nana and Paco. I’m sad to tell you that Nana passed away last week. After months of declining health due to congestive heart failure, she had a few days of rapid decline and died peacefully with my older sister with her and the rest of the family able to gather quickly for some final time together with her.

Over these last few days, my sisters have been staying at Paco’s apartment and taking care of him, while my spouse B and I have been tending to preparations for the funeral, which will take place mid-week.

We are very fortunate that this week is a week off for my son-in-law L, who was able to fly here from London to be with daughter E, granddaughter ABC, and all of us.

I admit that my mind has been richoting from one subject to another. Now that the funeral plans are all in place, I’m hoping I can calm my mind a bit, but it remains to be seen.

With so much happening, I’m not online very much, so I may not be able to keep up with responding to comments. Please know that I appreciate all the thoughts and prayers that you send on behalf of Nana and our family.

In peace,
Joanne

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.

a move for Nana

On May 4th, my mom, known here at TJCM as Nana, moved to Mercy House, a residence for people under the care of our local hospice. She had been under the care of hospice since last summer, staying with Paco in their independent living apartment with the help of family and aides, first for overnight and later during the day as well. As her symptoms from congestive heart failure worsened and she became weaker, the care needed to keep her safe and comfortable was outstripping what home aides are legally allowed to provide, so, when space became available at Mercy House, we chose to make the move.

Of course, there has been an adjustment period with new caregivers and routines and food, but things are settling in now. The staff all share a calling and commitment to this work, as do the many, many volunteers who make Mercy House such a peaceful, loving place.

My younger sister was here for the first week, helping Nana to settle in and staying overnight with Paco at the apartment. As it happened, on the one week mark at Mercy House, granddaughter S finished her semester at college and came to visit. She used her dorm room decorating skills to hang pictures for Nana and my sister, her husband, and S had an early Mother’s Day/Nana’s birthday lunch brought in from a favorite restaurant.

from Nana's room in Mercy House
part of Nana’s wall decorations

This second week, someone from my house has been staying overnight and we are developing a rhythm to our days. Nana and Paco each do their early morning routine in their places of residence and then, mid-morning, we bring Paco to Mercy House for the day. Like hospice, Mercy House’s mission reaches beyond care of the individual to care of the family, so the volunteers and staff help Paco, too. There is always food available in the common room and Nana and Paco eat supper together at the dining room table, which is special after so many months of eating on a tray table in the apartment living room.

At the moment, Nana is the only resident who is able to be that mobile, so Nana and Paco usually have the dining table to themselves, but it also means that we were able to have two dinners this week that my spouse B, daughter T, and I shared, too. On Monday, we brought Swedish meatballs, made with the recipe that Nana used which had come to her from her Swedish landlady 55 years ago, for a belated Mother’s Day dinner. Last night, we brought in Italian food and an apple-blackberry pie that B had baked to celebrate Nana’s 86th birthday. The volunteers had decorated the table with a centerpiece, special napkins, and a birthday hat for Nana!
Nana with birthday hat

Next week, my older sister will arrive for a week. We are all grateful to have so much love and support surrounding us.

Thank you also, dear readers, for the thoughts and prayers that you have been sending and for your patience with my increasingly haphazard postings. I truly appreciate your visits and comments here.

catching up – again

First, I would like to offer Passover and Easter blessings to those celebrating and sincere wishes for peace, love, and joy to all!

While regular readers might have thought I would have more time to post with daughter E and granddaughter ABC in the UK for an extended visit, and while I myself had hoped this might be possible, it hasn’t worked out that way, at least so far.

And, while I do try to write about the most salient things that are at the top of my mind, I am finding myself too overwhelmed to find words to express how I feel. Maybe, eventually, I’ll be able to. Perhaps in poetry. Perhaps years from now. Perhaps not.

In practical/physical terms, a large share of the last week has revolved around dealing with some changes in Nana’s condition. The edema from the congestive heart failure had accelerated but increasing the diuretics to address it lowered her already low blood pressure even more. We are trying to walk a very fine line to balance the two and, with her usual hospice nurse and aide unavailable for a few days, I have been trying to keep a closer eye on things and inform all the different private aides about the changes and new things we have to watch out for.

Amidst all this, it was wonderful to be able to celebrate Easter together. Daughter T and I attended Easter Vigil at church last night, which was a comforting blend of the familiar and the unique, with the once-a-year rituals of blessing the Paschal candle and welcoming new adult members to the church.

I had my pyx with me to carry the Eucharist to give to Nana today. T, Nana, and I prayed together before T gave communion to her grandmother.

We brought Easter dinner to share with Nana and Paco and Mary who is the Sunday daytime aide. My husband B made Swedish meatballs from a recipe that came to us through the Swedish landlady of my family when I was a toddler. For dessert, he made cherry pistachio biscotti and shortbreads, the latter from a recipe from his family. Not exactly traditional Easter foods, but delicious and special for us this year.

I wish there were a fast and easy way to get thoughts from my head into a post to send out to you all, but I’m afraid instead you will have to continue to put up with haphazard posts with various gaps that I may not even recognize in time to fill them. I hope to back up and write about a few things, like my second whirlwind trip to Northampton last month, as time and brainpower allow, but I know better than to make promises these days.

SoCS: breaking news

So far, I have written posts here and here about my recent trip to Northampton to sing Brahms Requiem at Smith. There will be a couple more short posts about that weekend, but now I interrupt with breaking news.

Nine-month-old granddaughter ABC is dealing with her first cold.

She is very, very stuffy and her nose is running. Despite that, she is being generally good-natured – except when we need to wipe her nose, which she does not enjoy at all.

She has slowed her activity level a bit. While before she wanted to walk with someone holding her hands, although sometimes only one hand and every once in a while taking a couple of steps on her own, she is allowing people to sit with her. She even will nap sitting astride my tummy, either leaning back against my legs or forward against my chest. Bonus:  being on an incline makes it easier for her to breathe.

We are hoping she will recover quickly so that she can visit with Nana and Paco again soon. ABC and her mom leave on March 20 for a three-month visit in London with daddy/spouse L. Maybe we will do a skype call with Nana and Paco tomorrow as a practice run for the months she will be “across the pond.”
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “so far.” Join us! Find out how here:  https://lindaghill.com/2018/03/09/the-friday-reminder-and-prompt-for-socs-march-10-18/

 

 

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