Paco update

Linda’s prompt for Stream of Consciousness Saturday last week was to base the post around a word that contained -igh. My thought was to write a post beginning with “Sigh” about my father’s continuing health struggles, following up on two previous SoCS posts.

The day after I wrote the post linked above, Paco’s condition deteriorated and I made the decision to send him to the emergency room. After the initial check-in, I was allowed to be with him. The ER team was very thorough and found that he was dehydrated and had three new fractures in his lumbar vertebrae. After some IV fluids, he went back to the rehab facility by ambulance at 3 AM.

I caught a nap and was very grateful to learn that my older sister had moved up a planned visit and would arrive that afternoon. She spent a lot of time with Paco on compassionate care visits while I worked out a lot of logistics. It turned out that a rehab room opened up within his senior community; the place where he currently was in rehab was a sister facility in a nearby city. Paco was set to move back on Friday and I spent a lot of time packing up things in his assisted living unit, some to send up to his rehab room there and some to bring back to our house as we had decided to give up his place in assisted, as we know he won’t be well enough to return there any time soon – and may never recover to that point.

The plan on Friday had been that our family would finish clearing out his place in assisted and help Paco to get settled into rehab, but we arrived to find that someone in the assisted wing had tested positive for COVID, so it had to go into lockdown. Fortunately, this didn’t affect Paco’s move and he arrived safely via medivan. I signed yet another cache of documents and was allowed a short visit to help him get settled.

Unfortunately, our hard-won rights to expanded compassionate care visits got lost in the bureaucracy with the impending holiday weekend adding another layer of complications with so many staff away on vacation. I was able to get permission for some extra visiting time over the weekend but face another round of changing personnel, location, rules, etc. this coming week.

Meanwhile, Paco is confused and exhausted. The silver lining is that his pain level is generally low.

The big question mark remains how much recovery is possible in regards to daily living functions. I don’t know if the rehab team will be able to make a valid prediction or not.

It may be a situation of wait and watch and work and hope and pray and see where we end up.

One-Liner Wednesday: a helpful hint

Helpful Hint: A good, multi-layered cloth mask makes an excellent eye shield if you need to try to sleep under bright lights. (discovered during an emergency room visit with Paco Sunday night/Monday morning)
*****
Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2021/06/30/one-liner-wednesday-laying-down-on-the-job/

broken

I think I might be broken.

Last week was rough as I wrote about for Stream of Consciousness Saturday yesterday.

Today is Father’s Day in the United States. I was able to speak briefly with my dad this morning, but he was pretty confused about handling the phone and they were about to change one of his dressings. There aren’t visiting hours until Tuesday evening, so there is no chance to see him. We did drop off a card yesterday and he has gifts and cards already from my sisters.

He can’t really remember that it’s Father’s Day anyway…

Meanwhile, it is also Father’s Day for B here at our house but I’m having trouble focusing enough to plan dinner or much of anything else. It’s taking effort just to make my eyes focus to write this.

I did sleep quite a bit last night after very little sleep the night before.

Somewhere in the midst of all of this, we went out to dinner for our 39th wedding anniversary and opened some cards. Originally, we were going to go away for a couple of days. We still might, once I get through the initial care conference for Paco on Tuesday. I need to write notes and questions to prepare for that. Oh, and also get ready to deal with all the insurance folks.

Maybe tomorrow.

Maybe I won’t feel so broken then.

SoCS: and the hits just keep on coming…

No, this is, unfortunately, not going to be a post about what’s on the Top 40.

I have been scarce/non-existent here at Top of JC’s Mind for the last week because my 96-year-old dad, known here as Paco, fell in his assisted living unit last Saturday. B and I had visited him in the 1-1:30 visiting slot, but he fell about 3:00. We think he was in the kitchenette but aren’t sure. Although he hit the floor pretty hard, he managed to get himself up and over to the couch where he called for help.

He has had a few falls before, but he hit much harder this time. His left side took the force of the fall. He was sent by ambulance to the local hospital where the extent of his injuries was revealed and he was admitted with a bump and cut on his head – luckily no concussion – bruises and contusion on his left arm and elbow, deep bruising on his left hip – luckily no break – a cracked left rib, and two wing fractures of back vertebrae.

The fall, pain, unfamiliar surroundings, etc. also worsened his cognitive condition. Paco already is suffering from dementia and this fall completely unmoored him. On Wednesday, he was stable enough to transfer to a rehab unit. We are hoping that his cognition will improve as he heals and gets stronger. It’s a much calmer and more stable environment than being in the hospital.

Tomorrow is Father’s Day in the United States and it’s hard because we won’t be able to see Paco as visiting in the rehab facility is extremely limited.

The other hit that our family is trying to absorb is that we just got word that a member of our extended family has been diagnosed with metastatic cancer. She is only thirty. She is strong and fighting but everyone is devastated.

And the hits just keep on coming…

*****
Linda’s prompt for Stream of Consciousness Saturday this week is “hat/het/hit/hot/hut.” Join us! Find out more here: https://lindaghill.com/2021/06/18/the-friday-reminder-and-prompt-for-socs-june-19-2021/

SoCS: Who knows?

Who knows?

These days, seemingly no one.

I guess that is a bit overbroad. It depends on the context and what comes after the “who knows” bit.

If someone asks, who knows what the dinner plan is for tonight, there’s a pretty good chance that I would have an answer. I couldn’t tell you if the plan would have follow through, but I could at least tell you the plan…

The hardest questions are the “who knows why” variety.

Yesterday, the Capitol Police, who are the ones who guard the Congress in Washington, DC, lost another officer in the line of duty. A second officer is hospitalized and expected to recover.

The man who attacked the police with his car and a knife is dead and the news reports are full of questions about why he did this.

So, who does know why?

Perhaps, no one knows. Even if he were alive, he might not be able to articulate a reason, especially if he was suffering from mental illness.

Even without knowing, I hope that everyone will offer support to all the impacted families and work together to reach out to those who are suffering. I also hope that Congress will honor the service of the Capitol police who protect them and their families by expanding the number of officers and giving them more resources for training, equipment, and protection. Of course, we should also expand medical care, including mental health care, so that every person always has access to it.

We may not know why this happened, but we can work to make it less likely to happen in the future.

*****
Linda’s prompt for Stream of Consciousness Saturday this week is to begin a post with who or whom. Join us! Find out more here: https://lindaghill.com/2021/04/02/the-friday-reminder-and-prompt-for-socs-april-3-2021/

2019-2020 SoCS Badge by Shelley!

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.