I have been posting less than usual over the last couple of months as we have been dealing with health difficulties with my father, known here as Paco. He had a couple of falls in June, resulting in some cracked bones, which have been healing well while he has been in a rehab program. Unfortunately, he also suffers from dementia, which has worsened, and from a number of other health conditions, which are not unexpected in a 96-year-old but which have necessitated remaining in a nursing home rather than being able to move back to the assisted living floor where he lived previously.
It has taken a lot of time with in-person visiting and inordinate amounts of time dealing with paperwork and red tape. My sisters have been coming into town to help, but I am still not finding time to write as much as I would like.
On Monday, I’m happy to report that the UK contingent of our family – our daughter E, her spouse L, and their two children 4-year-old ABC and just turned 1-year-old JG – arrived from London for a two week visit. It is our first opportunity to meet JG in person. She is adjusting to our actually being flesh-and-blood people rather than images on a screen. It’s amazing that she is able to deal with being a different place with different people after being in lockdown so much of her life, especially when you consider it took two large airports, a plane, and the longest car ride of her life to get here. Also, five hours worth of jetlag. It’s also amazing how much ABC remembers from when she lived with us, given that this is her first time back here since she moved to the UK in October 2019.
Because of the delta variant’s prevalence, we haven’t ventured much from the house over these last days and probably won’t be taking the children to many indoor spaces, given that they are too young to have been vaccinated. We do plan a visit to Paco later this week. When the weather is better, we will also be able to go to the parks and take rides on the carousels for which Broome County is known.
My younger sister is here visiting and helping with Paco and my older sister and her spouse will arrive next week for a few days. My plan is to carve out a bit of time for some posts which will update topics about which I frequently post; I’m hoping to be brief, which is always a challenge for me!
Let’s see if I manage to follow through with this plan…
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.
I can’t bear to go through the details but I will say that things appear to be on an upswing at the moment with some hope for stability on the horizon.
There will be a rare event to end the week, though, as B and I will be attending the wedding of two of my poet-friends this afternoon.
On July tenth, there was a rare island of normalcy.
Or an almost normal version of a rare event.
I participated in a live poetry reading in conjunction with the Empty the Inkpots exhibit at the Vestal Museum. The reading was part of the Summer Art Festival, a collaboration of the Museum and the Vestal Public Library. Several of the poets from the Binghamton Poetry Project who have work included in Empty the Inkpots read from the stage/deck at the Museum with the audience arrayed in scattered chairs and benches and on the lawn. It was the first time in many months that I have participated in a live-and-in-person poetry reading. It had been even longer since I had had to read with a microphone. The amplification was useful because the museum is near a busy roadway.
I chose not to read the poem I had on display, which is about the early months of the pandemic; it is available at the link above. Instead, I read three poems from my manuscript about the North Adams, Massachusetts where I grew up. “Conveyance” appeared in the spring 2021 anthology of the Binghamton Poetry Project. The other two poems, “North Adams Public Library” and “Monroe Bridge Mail”, are currently unpublished so I won’t share them here.
I was very happy with the reading on a number of counts. First, there were people in the audience who came at my invitation, including one who saw my Facebook announcement of the event. Second, though I was nervous before, I was reasonably comfortable during the reading, even managing the microphone adjustment without much trouble. Third, the reading was well-appreciated by our audience. We had six poets, with diverse styles and viewpoints, represented. We read in alphabetical order. Uncharacteristically, I was not first, which was helpful for me. I like to read early in the order, but I’m better at reading second than first. I was also grateful that the most experienced poet and performer was last as it gave a strong finish to event. No one should have to follow J. Barrett Wolf at a reading!
Lastly, I was pleased to receive personal compliments after the reading from family and friends, some of whom are also poets. What was most heart-warming was that a woman that I did not know came up to me afterward and told me how much she enjoyed my poems and asked where she could find my work. Of course, I don’t have any books of my own out, but I was able to give her my paper copies of my poems, which included my bio for the exhibit and the address for Top of JC’s Mind.
The reading was an island of normalcy not only because of the pandemic but also because most of my time these days has been wrapped up in dealing with the care of my 96-year-old dad who is currently in a rehab/skilled nursing facility after a fall and ensuing complications. It’s why it has taken me so long to post about the reading.
It’s also why, for the first time in years, I am not registered for the current sessions of the Binghamton Poetry Project. I am usually visiting my father in the early evenings. Even if another family member is available to visit, I can’t predict if I will have any creativity/brainpower left late in the day.
It’s made the reading that much more important as a reminder that my poetry life is still there, waiting for me to go back to it when things are more settled.
Since I was a child, my favorite color has been blue.
The color of my eyes and my mom’s and dad’s and sisters’.
The color of the sky at midday.
The color of some of my favorite clothes, although not jeans, which I never learned to like wearing.
I still like blue. I’m wearing it today.
But today, thinking of blue makes me think of how I’m feeling.
Blue.
Most of my #SoCS posts in recent weeks have been giving updates about my father, who is struggling to recover from falls, broken bones, infections, and we aren’t totally sure what else, while dealing with dementia and the wear and tear of ninety-six years.
I am doing everything I can to keep him as comfortable and content as possible and he is doing much better than he was ten days ago. We finally have the rest of his things in his skilled nursing/rehab room.
His Irish-themed banner and plaque are on his door, which makes it easier for him to find his room in the hall of similar-looking doorways. We finally got a temporary phone number working, although he needs help to answer calls and we aren’t sure if he can re-learn how to dial.
Baby steps.
It’s just hard for me not to feel blue. As much as I understand that this is just the journey we have been given in this last period of his life and that we are doing everything we can for him, I can’t help but feel sad.
All the time.
It’s hardest when I am with him, although I have a really good game face and manage to be cheerful – or seem cheerful – when I am interacting with Paco. He is sleeping quite a bit, which is probably good. Most of the time, he isn’t really aware of how much he has forgotten, so he is not blue, which is a blessing.
Here in the US, we are facing another wave of COVID. I think it is considered our fourth wave, but that has become pretty hard to define over the many months of the pandemic. What is different this time is that this wave is almost exclusively confined to the unvaccinated population, at least in terms of serious illness, hospitalizations, and mortality.
In New York State, where I live, the Northeast in general, and a few other states with high vaccination rates, you are seeing case numbers climb somewhat, largely because the delta variant is causing more breakthrough infections among the vaccinated, but you aren’t seeing extreme impacts on hospitals being overwhelmed and lots of serious illness and deaths.
In states like Missouri and Mississippi, with low vaccination rates, we are seeing conditions that look like the early days of the pandemic in New York, with hospitals overflowing with very sick patients, more than they have space, equipment, and personnel to handle. While in the first-wave, most of the very ill were elderly, now we are seeing that most of the very ill are younger adults. Even in these low-vaccination-rate states, the elderly are the ones most likely to have been vaccinated, so they are less impacted by this current wave, even with the delta variant making up a larger and larger share of infections.
As people who read Top of JC’s Mind from time to time may recall, I, spouse B, and daughter T are all part of the Phase III trial of the Pfizer/BioNTech vaccine. B and T both were in the original vaccine group and were vaccinated last August. They are now both enrolled in the follow-on study of booster shots and their efficacy. Like the original study, it is double-blind, so neither the participants nor the researchers know who received the actual booster and who received the placebo injection.
However, B and T are both having side effects similar to their other doses of the vaccine, so we are pretty sure that they got real booster shots, not placebos. For the record, last August, I got placebo shots. When the study was unmasked after the emergency use authorization was approved, I was offered the real vaccine, which I got in February. I remain in the study as part of the design to follow participants for at least two years. I don’t know if I might, in the future, wind up participating in a follow-on study for boosters as well. It will depend on how the results of the booster study that B and T are now in play out and whether more data is needed. It’s also possible that Pfizer may re-formulate in response to current and future variants and need a pool of test subjects for that. My family will continue to participate as long as we can be of use to help advance the science and protect public health.
It is so very sad to know how many people are suffering from COVID, especially now that we do have good vaccines available. I’m sad for people in countries or regions that don’t have access to the vaccine. I’m upset that there are so many who do have access but still remain unvaccinated, often because of misinformation about COVID and about the vaccines. Choosing to remain unvaccinated doesn’t just impact the individual’s health if they get infected. It also impacts public health, giving the virus more opportunities to mutate and create new variants. It also can spread the virus to others, which is especially dangerous if those people are also unvaccinated. Sadly, we are seeing an increase in hospitalizations of children, who aren’t yet eligible for vaccination, and teens, who are eligible but still have low vaccination rates in many states. Earlier this week, the state of Tennessee announced that it is ending all vaccine outreach to teens. It would be bad enough if this was just COVID vaccine but they are also ending outreach for other vaccines, like TDaP, HPV, hepatitis, and MMR boosters.
It’s appalling.
Please, everyone, remember that we are still in a pandemic – and will be until we can get COVID under control globally. If you have access to vaccines, please take them for your own good and for the good of others. Everyone needs to be vigilant to following public health and infection prevention measures recommended by public health professionals in your region.
COVID doesn’t care about your political views or whether or not you believe it exists. It is a virus that is just looking for a host to make it possible for it to replicate as many copies of itself as possible. If you are infected, you might be lucky and have mild symptoms, but you could pass it on to someone who might become seriously ill or even die. Or you might be unlucky and become seriously ill or die yourself.
The virus won’t care.
Your loved ones will.
***** Linda’s prompt for Stream of Consciousness Saturday this week was to base your post on your least favorite word. I don’t often think of having a favorite or least favorite word, but I thought that COVID definitely qualified as being my least favorite entity at the moment. If you’d like to join in with SoCS, you can find out more here: https://lindaghill.com/2021/07/16/the-friday-reminder-and-prompt-for-socs-july-17-2021/
I have long said that hope is the virtue that I struggle with.
Or maybe it is that I struggle with the intersection of hope and reality.
I do try to keep my hopes realistic, not veering off into fantasy, but lately, it seems, even my realistic hopes get dashed on a regular basis.
On a personal level, my biggest struggle to maintain hope has been with my father’s health condition after a fall four weeks ago. I keep hoping that the medical team will be able to figure out what is causing his increased confusion, disorientation, and fatigue, so that we can make him more comfortable, but we don’t seem to be able to. I am not hoping for a miracle. Paco is 96 and has several underlying health conditions. I know the time we have left with him is limited. I just want to help make things as comfortable and stress-free as possible. I didn’t think this was an unrealistic hope, but perhaps it is.
Even with this personal struggle, there is always an awareness of what is going around us here in the US. I had hoped that, with several effective vaccines widely available, we could tamp down the pandemic, including the newer and more contagious variants. Instead, we are seeing some areas with very low vaccination rates experiencing spikes in COVID cases. Another realistic hope dashed.
Equally or perhaps even more alarming is the increasingly bizarre behavior of the Republican party. I had hoped that, after what even Republican election officials knew was a fair election, and especially after the horror of the January 6th insurrection and attack on the Capitol, the Republicans would fulfill their Constitutional duties and govern, at this point as the minority party. But they are not. In states that have a Republican legislature, especially if there is a Republican governor, too, we are seeing rafts of legislation that try to suppress votes of people who are less likely to choose Republican candidates. This isn’t just another dashed hope. It feels dystopian.
Of course, some hopes are more mundane. I had hoped to get an SoCS post written before I fell asleep and I have managed that.
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.
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/
When I saw that Linda’s prompt for Stream of Consciousness Saturday this week was “up/down”, I knew that I needed to write a follow-up to last week’s SoCS in which I talked about my father (Paco) and his recent fall, hospitalization, and move to a rehab facility.
When I wrote last Saturday, it seemed that, though there was a long way to go, things were trending up.
Everything changed on Sunday when new complications arose. For various reasons, I will not even attempt to elaborate.
Let’s just say it has been a very “down” week.
We are working hard at untangling a mass of symptoms and trying to keep him safe and comfortable, but it’s an uphill battle. I know he is 96 and so, very vulnerable and prone to complicating factors but it is still so hard to deal with.
And to watch.
I know intellectually that I am doing all that is possible for me to help him and his care team, but my heart aches because I can’t make it better.
We have no idea what the outcome will be. It’s not just one day at a time, which is Paco’s favorite saying. It’s one hour at a time. One moment. One more early morning phone call telling me that he fell again during the night.
There are up moments here and there. When Paco easily remembers my name. When he gets to enjoy a slice of blueberry pie for dessert at lunch. When he manages to make a little joke with his aides.
I had planned to go to vigil mass today at a friend’s church, but was too tired to make the drive, so I went to a nearby church instead. I was blessed to see Sister A. there. She had been one of the stalwart visitors during my mother’s final illness, a span that stretched over two years. Because of the pandemic and other circumstances, I had not seen her in months. I was able to fill her in on Paco’s condition and she assured me that she has been lifting him up in prayer.
After such a “down” week, that assurance was a much-needed balm.
Joanne Corey 