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.