SoCS: JC’s Confessions #21

[Non-stream of consciousness introduction. Linda’s prompt for Stream of Consciousness Saturday this week is to write about the first thing that come to mind from the phrase “let go.” I drew a blank at first but then this topic floated to the surface, probably because it was on my list of things to write about in my series, JC’s Confessions, so what follows is the very dangerous intersection of writing stream of consciousness on a difficult topic. I do use a standard opening to explain JC’s Confessions, which will follow as a block quote before launching into the SoC portion of the post.]

In the first few seasons of The Late Show, Stephen Colbert did 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

I have trouble letting go of guilt.

Even when I’m feeling guilty about something that is not my fault.

Even when it’s something I couldn’t possibly have known. Or remedied.

I’ve had family members diagnosed with conditions which took years to figure out, yet I’m the one who feels guilty/responsible for not having figured it out sooner, even though I am not a trained health professional, just a family member and caregiver.

It would have taken asking totally implausible questions to figure some of these diagnoses out. For example, it turned out years later that one of my daughters’ migraines had started as a child with visual migraines, which manifested as things changing colors. Who would think to point out to their child that, in almost all instances, color is a fixed attribute of an object? Yet, I feel guilty for not having realized this problem before the more serious later intractable migraine that took six months to diagnose, two more to break, cost her a semester of high school, and would later prove to be only a small part of a larger diagnosis of fibromyalgia, now known as ME, and chronic fatigue syndrome.

Never mind that it took the doctors ten years to figure it out from the time symptoms first appeared. As a mother, I thought I should have known and been able to alleviate her suffering and help her.

I know that this guilt is totally irrational. I know that my family doesn’t hold me responsible for not being a super-doctor or God or some all-knowing being and getting them help sooner, but still, as hard as I try, there is a vestige of guilt that I can’t shake.

(I can hear those of you who were raised Catholic thinking that this is par for the course of Catholic guilt, although I think it is probably not only that.)

One of my more recent struggles with this problem is the fact that it took months of suffering before my father, known here as Paco, was diagnosed with heart failure, only days before his death. I tried and tried to get the health professionals at his facility to figure things out and treat him appropriately but I failed, robbing him of the peace, comfort, and dignity he deserved in his final months.

It hurts.

I know that I shouldn’t feel guilt on top of the pain, that I’m not at fault, but I still can’t shake the underlying sense of responsibility, failure, and guilt.

Maybe, eventually, I’ll be able to let it go.
*****
Join us for Linda’s Just Jot It January and/or Stream of Consciousness Saturday! (I promise it does not have to be as fraught as this post unfortunately is.) Find out more here: https://lindaghill.com/2022/01/28/the-friday-reminder-for-socs-jusjojan-2022-daily-prompt-jan-29th/

SoCS: if only…

If only I could organize my days…

or life…

is something I have been saying to myself off and on for years.

The truth is that most of my adult life has been spent as a caregiver, some of it in very challenging situations dealing with long-term illnesses.

Not the kind of life that lends itself to following a daily schedule. If you ever think you know what is happening on a given day, chances are the phone will ring in the morning and you will be off dealing with some need that has arisen.

Let me be clear that none of this is a complaint. Rather it’s just a statement of fact – and evidence that I was privileged enough to be able to choose a life of unpaid caregiving instead of needing to take paid work and cramming in the caregiving around my employer’s schedule.

The day after Paco’s death, the hospice social worker said to me that now I could figure out what I wanted to do. We had first met during my mother’s illness, so she had some idea of what my life has been like over at least the last few years, if not decades.

While it’s true that I have spouse B and daughter T at home, we are able to collaborate on taking care of the house and each other, so the years of intensive caregiving are probably over for a while, as long as we all remain reasonably healthy.

So, I’m starting to piece together how I want to spend my time in the coming months. Admittedly, right now I am necessarily busy with settling Paco’s estate and final bills and insurance claims and such, which takes a lot more time and energy than you might think if you have never had to do this for a loved one.

I’m trying to keep from jumping back into everything I have put on hold in the past because I think there is a danger of over-committing and exhaustion. I do know that I want to spend more time with writing, so, perhaps, finally regularly posting here again.

I also need to return to spending serious amounts of time with my poetry. During the recent Boiler House Poets Collective residency, I was able to re-connect with my full-length manuscript that revolves around that area and my family’s connections with it. I am going to do a review of it with the Grapevine Group, my local poetry circle, later this month and then do revisions and look for submissions opportunities. I also need to look for more opportunities for my chapbook, as the rejections have been rolling in over these last months so it is only out at a few places at the moment.

I am considering auditioning for a local chorus, although that might not be until after the holidays. I expect that, for the first time in many years, we may travel for both Thanksgiving and Christmas.

I am staying in the loop but not spending a ton of time on environmental and political issues. I still send letters and do public comment on social justice and environmental causes and send emails to my elected representatives but I am trying not to spend hours every day on it, as I did for years during the height of the anti-fracking fight in New York. I admire the energy and commitment of today’s younger activists and support their efforts as best I can.

Church volunteering is still on hold. Eventually, the book study I facilitate may return but only if we can meet safely indoors unmasked. We aren’t there yet.

So, can I do this? Can I re-organize my life and have it stick?

Maybe.

If nothing dire happens…
*****
Linda’s prompt for Stream of Consciousness Saturday this week was to being the post with the word if. Join us! Find out more here: https://lindaghill.com/2021/10/15/the-friday-reminder-and-prompt-for-socs-october-16-2021/

SoCS: luck

I’m not sure I believe in luck anymore.

Or maybe I only believe in luck, given that no amount of thought, planning, and preparation seems adequate?

Hard to say…

Was it lucky that Paco, after literally months of not being able to even remember how to even answer his phone, suddenly remembered how yesterday?

I thought that maybe he was recovering some brain function that we thought had been permanently lost in his falls in June.

Or was it unlucky because he called me at 12:45 AM to ask about a dental appointment that was on his calendar that he didn’t remember going to?

I called the aide station and asked for them to remove the receivers from his room. I also hoped that he would go to sleep. It was odd that he was awake at that hour because he hadn’t slept much during the day, either, and lately he has been napping extensively and sleeping all night.

At 1:45 AM, my phone rang again. It was Paco, calling to tell me that his phone wasn’t working. The aide hadn’t realized that there were two wireless handsets and Paco had found the second one, most likely the one on the homebase that was hidden behind his television.

I called the aide station to ask them to get the second handset out of there, which they presumably did, but I, who had only slept maybe an hour before the first call came in and not since, still couldn’t go back to sleep so I got up and did a bit of correspondence and finally went to sleep sometime after 3:30.

Of course, I was awake by 7.

On Saturday morning, the nursing home has a singalong at 10:00. Singalongs are by far Paco’s favorite activity, so I had planned to stay at home this morning and spend a few hours finishing touch-ups and a cover letter to submit my poetry collection to a press for consideration, but I don’t know if I have enough brain to do it.

Stream of consciousness blogging is one thing; editing poetry and following detailed submission instructions is another. I’m not sure my brain can handle the second.

It’s too bad I don’t drink coffee.

Or tea.

Or anything with caffeine.

Or that my body doesn’t seem to have the same effects from caffeine that most people do.

So, if I’m lucky, at some point this weekend, I’ll have enough brainpower to get the manuscript sent out.

If I’m really lucky, Paco will retain his phone calling ability while regaining his sense of night and day, which seemed to have failed him yesterday even as his phone skills reappeared.

But, yeah, it’s not really about luck, is it?

It’s about dementia and its progression and my worry and the taxing of my coping skills after so many years of caregiving for a succession of people with myriad needs.

Luck has little, or maybe even nothing, to do with it.
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “luck.” Join us! Find out more here: https://lindaghill.com/2021/08/13/the-friday-reminder-and-prompt-for-socs-aug-14-2021/


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.

Lessons (re)learned

I’ve spent the bulk of my time over the last (more than I care to tally) years taking care of various generations of my family, which has involved a lot of interfacing with medical, educational, financial, insurance, religious, and other institutions. Since mid-December, I’ve been mired in dealing with issues around Paco’s health and his move from his independent living apartment into the assisted living unit of his senior community via a hospital stay and a stint in the rehab/skilled nursing unit. There has been an avalanche of problems with medical and caregiving issues, as well as the seemingly more mundane issues of changing addresses, getting mail forwarded, etc.

The intensity of it all has reminded me of lessons I once knew about dealing with institutions, but had managed to forget until they were in front of me, again and often. A caveat on the following list: some institutions or, perhaps more precisely, some individuals within the institution do manage to react both competently and compassionately to individuals in difficult circumstances, but this is more the exception than the rule in my experience.

  1. Institutions are set up to deal with things that fit a certain pattern. If your situation is different in some way, they don’t adjust well – or at all.
  2. Institutions care more about their rules, dogmas, and self-perpetuation than they do about you. This holds true, sadly, even for medical, caregiving, and religious institutions.
  3. Institutions are slow to react to changing circumstances. An example: insisting that you have a special form notarized in order to process an address change, even though you are already sending them a durable power of attorney and a death certificate proving that you have legal authority to do so, when, during a pandemic, this adds personal risk to their client and the notary.
  4. When an employee of the institution makes a mistake, the person can follow those instructions to the letter, but the consequences of the mistake will redound to the person or their loved one. The institution will not make allowances for their employee’s mistake and make things right, even though you were acting in good faith and doing what you were told to do.
  5. Lots of balls get dropped. You can been assured that thing X will take place tomorrow, only to find out the next week that it hasn’t – and that no one remembers that it was supposed to have taken place.
  6. It’s very difficult to get accurate information through when it needs to be relayed through multiple people. I can’t tell you how many times the answer to my question has no bearing on the question I actually asked.
  7. People hear what they want to rather than what you actually say. This is a corollary of point 1.
  8. Institutions don’t want to accept responsibility for their decisions, policies, and errors. They will blame you or the computer or something other than themselves. In New York State, they often blame Governor Cuomo.
  9. Institutions are defensive. A neutral re-telling of facts can be taken by an official as an accusation. This is a corollary of point 7.
  10. Institutions think they know more than you do. Sometimes, this is true. However, it is not true that they can understand someone as well after fifteen minutes of interaction as you do after knowing the person for years/decades.
  11. Having to do everything at a distance makes it harder. While some things are best handled electronically or in writing, others are easiest to take care of in person. One particularly gut-wrenching aspect of our current situation is that we can’t see Paco in person, so we can’t keep on top of what parts of his care plan aren’t being consistently followed. When I do see him and see that he hasn’t shaved for several days, it’s very disconcerting, knowing that someone is supposed to be helping him with that daily and that he isn’t able to articulate that to me or the staff himself. See points 4,5, 8, and 9.

I wish I could say that my relearned lessons made things easier or less upsetting, but they haven’t. I’m tired and frustrated and dreading the next set of problems/tasks awaiting me this week added to the unresolved things from last week.

Wish me luck.

I need it.

Valentine’s Day

The usual greeting for today would be “Happy Valentine’s Day!”

Not this year.

I’m having a difficult time using “happy” as an adjective after the last week.

My family has been struggling with caretaking issues for Paco, complicated by the pandemic. I’ve spent this weekend feeling as though I want to cry, but not quite being able to let myself do it.

It’s the opposite of “happy.”

The United States is also dealing with the first day after the second impeachment trial of our former president. The trial was sobering, as it drove home the extent of death, injury, and damage done during the insurrection and how very close the vice president and members of Congress came to being injured or killed. Somehow, even though more than 67 senators said that DT was responsible for inciting insurrection, only 57 voted to convict falling short of the two-thirds majority needed for conviction. There are likely to be legal repercussions for the former president coming through the judicial system, possibly both federal and state. Meanwhile, he is likely to seek revenge against those Republican members of Congress who voted for impeachment or conviction by advocating that their state parties censure them, by advertising against them, and by funding primary opponents.

Let me be clear that even if DT had been found guilty in the Senate trial, it would not have been an occasion of happiness. It is impossible to feel happy in the face of so much suffering, pain, and fear.

I am trying to find comfort in the message of Valentine’s Day that love is strong, enduring, and the most important aspect of our lives.

May it be so.

May it overcome our present situation.

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.

School/work

The pandemic has heightened awareness of a number of social problems in the United States.

One revolves around the care and education of children. Political and business leadership often spout platitudes about how important children are and how much they care about them, but they seldom back up their words with meaningful policies that help children and the people who love, care for, and educate them.

Before the pandemic, American families often cobbled together child care with parent(s), school, relatives, neighbors, and paid caregivers, who often had to charge more than the family could afford to pay even though their own salaries were so low it was hard for them to get by. When schools and most day-care centers closed due to the pandemic, parents were suddenly trying to do paid work themselves from home while simultaneously trying to care for and educate their children or were forced to quit a job outside the home to be at home for their children.

It’s not a sustainable situation for many families.

There is a big push by the president and some state and national leaders to re-open schools full-time and full-capacity in the fall, even though that is against the recommendations of public health experts, in order for adults to return to jobs outside the home or so they can work from home without interruptions, but, besides being a huge health risk for children and adults, it fails to address the root of the issue.

Somehow, caring for children in exchange for a salary is considered “work” but caring for children without a salary is not considered work. Hazel Henderson calls this non-monetized part of our system the “love economy.”

The United States lags far behind other countries with advanced economies in acknowledging the love economy. We don’t offer mandatory paid sick leave, parental leave, or caregiving leave. People who do get paid as caregivers, whether for children, elders, or other vulnerable people, often earn shockingly low wages. For that matter, many people working in other kinds of jobs also don’t make a living wage, making it impossible to fully care for their family. Other countries also have a must more robust system of social services, so that people have access to adequate clothes, shelter, food, medical care, and education regardless of their income level.

As part of our efforts to #BuildBackBetter, the United States should reform our economic, health, educational, and social systems so that every person has adequate resources to lead a life of dignity. Some components of such a system that have proven successful in other countries have been single-payer universal health care, required living wages for workers, a graduated tax system that raises enough revenue from the top of the income spectrum that those in the lower end can afford their tax bill without compromising the needs of their household, free public education, paid leave for sickness, caregiving, and vacation, and a robust social safety net so that no one goes without food, housing, and other basic necessities. I would also like to see more social recognition and financial support for caretaking that is currently part of the “love economy.” A possible way to address this would be through a program of universal basic income or a stipend for those caring for a child, elder, or person with a long-term illness or disabling condition.

Obviously, crafting systemic change will take time and new national leadership. For the moment, I think it is foolish to implement a national school opening policy. Historically, education has been the province of local districts within the framework of state policy, allowing the system to adapt to local conditions. The wisdom of that flexibility is even more evident during the pandemic. Areas with low rates of illness may plan to implement hybrid systems where students attend in person part-time and online part-time so that physical distancing can be used to keep the virus in check. Areas with very high infection rates may need to keep students at home learning virtually until their infection rate is under control, when they could begin to phase in in-person attendance. All schools will need plans for dealing with changing circumstances; as there have been school closing plans to deal with severe flu outbreaks or natural disasters, there will need to be COVID plans to try to keep the school community and the general public as protected as possible.

Everyone wants students to be back to in-person classrooms, but only if it is safe for them, the school staff, their families, and the community. Pretending we can go back to the pre-pandemic system without grave public health consequences is foolhardy. Instead of wishful thinking, we need to use data, science, expertise, care, and intelligence to adapt to our changed and changing circumstances.

It’s what our children and youth need and deserve.

Whose labor?

Today, the United States observes Labor Day, which celebrates workers, especially those who are members of unions.

I heard a discussion on the radio today about jobs that have been replaced by technology and another about the rights of workers who are considered independent contractors instead of employees, which generally means they get no benefits. These discussions also touched on the nature of work and what it means for human dignity and living standards.

One caller touched on a subject that is close to my heart, that people who act as unpaid caregivers are not considered part of the economy at all, despite their value to their families and communities. Most of the tasks that I have done over the years can be paid work, too, such as child care, elder care, driver, cook, laundry worker, and now even grocery shopper. Of course, these occupations are usually low-paying, reflecting the devaluation of caregiving in the United States. Granted, most people with paid employment also have to take care of homes and/or family members, but many of them pay someone to do some of that work.

Caregiving is work and those that do it should be respected and recognized as part of the economy. This dynamic is part of the movement for a universal basic income, most publicly articulated at the moment by Democratic presidential candidate Andrew Yang.

Having spent most of my life in volunteering and family caregiving, I know that my labor has made valuable contributions to society. It would be nice to have meaningful national recognition of that.

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.

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