Dealing with dementia

AARP recently published a gut-wrenching, heart-warming article entitled Tony Bennett’s Battle with Alzheimer’s.

Alzheimer’s runs in my father’s family. Paco’s father and all three of his siblings who survived into their seventies struggled with it. Because of his history, Paco enrolled in a long-term medical study on the effects of medications as possible preventatives for symptoms of the disease, which, unfortunately, did not find any effective medications.

As Paco aged well beyond the onset age of his afflicted family members without symptoms, we were relieved, as it looked like he might have avoided those particular family genes. People did always say that he took after his mother’s side of the family.

There are, however, other types of dementia, the risks of which increase with age. Paco, who will turn 96 next month, is suffering from some unnamed type of dementia. We are grateful that, while the memory loss is problematic, he has retained his generally cheerful disposition, sparing us all the personality changes that were so jarring in Paco’s father and siblings.

He has been having memory loss and cognitive problems for several years, which we had been managing with daily visits, phone calls, notes, pill organizers, and staff help. Things got immensely more complicated when COVID limited our in-person visits and disrupted Paco’s daily routine. It also made a possible move to the assisted living unit where his care could be better addressed more difficult, as family visits were nearly impossible for months.

When Paco became ill and was hospitalized in December, the decision to move out of his independent living apartment was made for us. There was no way that he could be safe without 24/7 staff availability, which he now has in the assisted living unit, where he has his own living room, kitchenette, bedroom, and bathroom along with three daily meals plus snacks, a nurse to manage and deliver his medications, aides to assist with activities, and the company of the other residents, all of whom have now been vaccinated against COVID-19 and most of whom he knew because they also started out in Independent Living in their senior community. Unfortunately, in-person visiting of people outside the unit is severely restricted, although I’m hoping that increasing vaccination rates and warmer weather permitting outdoor visits will ease the situation in the coming months.

Because I genuinely do try to address issues that are on the top of my mind here, it’s been difficult not to write about Paco’s dementia more directly over these last years. For a good chunk of that time, I avoided it because Paco followed my posts via email and I was afraid posting about it would further confuse or upset him. Now, he is well beyond being able to navigate email and websites, so I don’t have that worry – and the few people who read my blog and know Paco in real life already know the situation.

In truth, I’ve also had difficulty articulating my thoughts and feelings around this. Although my family dealt with cognitive decline with both my mother and father-in-law when they were terminally ill, Paco’s long, slow loss of memory has been even more excruciating. While I can adjust to the loss of short-term memory that results in answering the same question multiple times in a short phone conversation, I have a harder time dealing with the loss of long-time skills and words. When he can be looking at a dinner plate with his favorite food but not remember what it is. When he forgets the name of someone he has known for decades. When he, who was always meticulous in following his finances, can no longer add numbers.

It’s painful. Every time. And hard to express in words. Even in poetry.

My consolation is that it is seldom upsetting to him. By some grace, he is handling things with equanimity with only occasional moments of frustration.

He keeps reminding me of his favorite saying, “We’ll take it one day at a time.”

SoCS: surprise poem

I carved out a bit of writing time today – a rarity in the whirlwind that has been my life lately.

I went to Linda’s blog to read the Stream of Consciousness Saturday prompt which is:

Your prompt for #JusJoJan and Stream of Consciousness Saturday is: “the beginning, the end.” Write about the beginning of something and the end of  something. Bonus points if your first sentence contains “the end” and your last sentence contains “the beginning.” <– Read that again. Have fun!

I admit that I couldn’t wrap my head around beginnings and endings as I am mired in a seemingly endless middle with lots of twists and turns and no real clarity of if/when there will be a conclusion, so I set the whole enterprise aside and decided to do some housekeeping in my overcrowded Google Chrome window. One of the first tabs I went to was one for The Ekphrastic Review, which has a new monthly column on ekphrasis, which is the practice of basing one work of art on another, most often used in the context of writing poetry based on visual art pieces.

While I was there, I figured I should check out the current Ekphrastic Writing Challenge. It is a painting called The Two Sisters by Théodore Chassériau. Given that I have sisters – and two daughters and two granddaughters – the painting inspired a poem in response, so that has become my beginning (middle) and end for this post.

Well, perhaps not quite the end yet. The poem does have an end, of course, but the real ending will be when I submit it to the challenge. I want to let it set a bit and will probably share it with daughter T. I don’t have another meeting of my critique group before the entry is due, so I’ll have to trust sending it without professional critique and revision.

Still, it was nice to have a poem appear on a day that I hadn’t expected it – and to have a blog post appear when I didn’t think I would have one of those either.

But no bonus points for me this time around…

*****
Join us for Linda’s Just Jot It January and/or Stream of Consciousness Saturday! Find out more here: https://lindaghill.com/2021/01/29/the-friday-reminder-for-socs-jusjojan-2021-daily-prompt-jan-30th/

January first

I’m generally not a big celebrator of New Year’s Eve/Day, looking at it as just the next day rather than a new start. This year does feel a bit different, as I am grateful to have made it through the tumult of 2020 and have hopes for 2021 for improvements in the governance in the US and for vaccine distribution and better public health policy to finally start to tamp down the pandemic by spring.

Still, personal circumstances make it seem less like a new start and more a continuation of existing issues. My dad, known here as Paco, is expecting to move from the rehab unit of his senior community into the assisted living unit next week. I am busy with paperwork and packing to facilitate the move. It’s awkward because, with COVID restrictions in place, family is not allowed into the health care building where the assisted unit is, so we can prepare and pack but can’t help with the actual moving, unpacking, and arranging.

Ordinarily, I would be gearing up for Linda’s Just Jot It January and planning to post every day for the month. I cannot wrap my head around posting every day this January with so much going on, including the fact that I should get my second dose of shingles vaccine this month. The first dose made me sick for a week, so I expect a similar experience with the second dose. I’m not looking forward to that, but I’ve had shingles before and am anxious to do everything I can to avert a repeat occurrence. When I do post in January, I will link to #JusJoJan, but I am giving myself permission to post sporadically rather than consistently.

I am somewhat uncharacteristically struggling with words, both spoken and written. I think I am overwhelmed enough and exhausted enough that my brain can’t settle down to easily arrange my thoughts into cogent language. It’s not good for my blogging or poetry and it’s disconcerting for conversation, especially when I have to have so many phone calls and conversations to get things arranged for Paco’s care. I’m managing, but nowhere near the level I want to be.

I’m asking, once again, for your patience as I slog through this.

I should close now and make myself copy dates and commitments into my 2021 calendar. It’s a dreaded task every year and 2021 is no different in that regard.

SoCS: cards

Over the past few days, I have started to work on my Christmas card list.

Well, Christmas, Hanukkah, solstice, Kwanzaa, New Year’s, or whatever anyone is celebrating list…

Sending greetings this time of year is one of my highest priorities of the season, so I am determined to get things in the mail to my list. There are a number of people that I am only in touch with at this time of year – and a number that I haven’t seen in person in decades – and some that I haven’t heard from in decades, but it is important to me to send something to them.

These past few years haven’t been exemplary for me, though. There were years that I sent letters only instead of cards because I couldn’t bring myself to the extra work of choosing and signing cards. I’ve accepted help from family members with addressing and sending. Last year was probably the most difficult. I couldn’t bear the thought of following up “Merry Christmas! Happy New Year!” with “Not sure if you heard the news that my mother died.” I wrote a letter to my friends in November and left B and T with the task of sending cards to the rest of our list.

But this year, I’m trying to get back to something closer to what I used to do, choosing cards, signing and hand addressing envelopes, adding Christmas seals, stamps, and return address labels, enclosing a letter and photo when appropriate.

So far, I have about half the cards written and envelopes prepared, but none of the enclosures yet.

I did do a step that I have skipped for several years, going through last year’s cards received and marking them in the appropriate box on my list, which is written in a special holiday card list booklet. (Actually, this list has also become my de facto address book. I used to keep a separate address book but haven’t updated it in years.) This has been poignant because many of the notes on the cards include condolences for my mom and often reminiscences on the loss of people’s own mothers.

I haven’t quite figured out what to write about 2020. How to sum up a year that has been marked by such universal fear, loss, grief, and sadness, but that has also seen such blessings in our lives, such as the fact that B’s job is able to carry on from home and the safe arrival and thriving of granddaughter JG, even though we can’t travel to London to meet her.

I’ll work on it.

Later.

After I’ve gotten the rest of the list finished with cards chosen, signed, addressed, with envelopes open and waiting.

*****
Linda’s prompt for Stream of Consciousness Saturday this week is “list.” Join us! Find out more here: https://lindaghill.com/2020/12/04/the-friday-reminder-and-prompt-for-socs-dec-5-2020/

2019-2020 SoCS Badge by Shelley!

X years ago

Facebook often presents users with the opportunity to repost something from prior years. Today, it suggested this photo from two years ago:

a post-dinner four generation photo of me, Nana, daughter E, and granddaughter ABC

This was our last Thanksgiving with my mom, known here as Nana. She passed away from congestive heart failure the following May. Daughter E and granddaughter ABC moved to London, UK, that October when E’s spousal visa finally came through. ABC is now in nursery school and big sister to JG, whom we planned to meet this month until England went into a new pandemic lockdown phase.

It’s a lot in two years.

And it seems like it’s been longer than two years.

Three days ago, one of my poet-friends posted a photo from the Tupelo Press/Studios at MASS MoCA residency from which the Boiler House Poets Collective sprang five years ago. In the comment thread that followed, someone asked if anyone had written about it, which prompted me to re-read my blog posts from the residency. This post links to most of them. It was interesting to read my real-time take on what was happening, although I did temper the amount of anxiety I expressed somewhat. It was nice to see that I accomplished more than I remembered and good to be reminded of our various sessions with our poet-teachers and the bonding among our original nine poets-in-residence.

We have gone back to North Adams for a reunion residency every autumn, until being derailed this year by COVID. We have a reservation for both 2021 and 2022, though, which is tempering the sadness at missing this year a bit.

And, yes, those five years feel longer than they are, too.

Binghamton Poetry Project Fall 2020 anthology and reading

Due to the pandemic, the Binghamton Poetry Project has moved to Zoom for 2020. For each of our spring, summer, and fall seasons, we did five sessions of poem study and prompts, followed by a reading via Zoom. For the fall, our directors at Binghamton University have re-imagined our anthologies, which had been distributed in print at our in-person readings in prior years, as a digital publication. You can find the anthology at the Binghamton Poetry Project site here: https://thebinghamtonpoetryproject.wordpress.com/fall-2020-anthology/

One of the 2020 innovations from the Binghamton Poetry Project was to offer two different workshops, one for beginners and one for more experienced poets. I was part of the latter group. I enjoyed working with our instructor Shin Watanabe, who is a PhD student at Binghamton University. I also appreciated the opportunity to connect with the other community poets who attended, some of whom I have known for years in person and others of whom I have only met via Zoom. One of the advantages of Zoom meetings is that we have been able to include poets who are further afield, including some from the Ithaca area.

All three of the poems I chose for the anthology were written in response to Shin’s prompts based on our reading for that session. I thought it might be interesting to include how these poems came to be written; one of the advantages of taking a class or workshop is that you generate poems that otherwise would not have been written were it not for the prompts.

That being said, this first poem is one that was conceived before the prompt, as it will eventually be part of the collection about the North Adams, Massachusetts area that I have been working on for several years. The prompt was about employing interesting adjectives, based on our study of The Colossus by Sylvia Plath.

Navigating North Adams for MWS

Google maps had no street-view
for the addresses you had unearthed
through Ancestry.com
in the year since we each lost
our mothers May-days apart.
We were excited to discover
your great-grandmother

as a young Scottish immigrant
lived in the city where I also had roots.
As I drove the two hundred miles there,
I thought of you,
ten times further away,
of the photos I would send
so we could imagine

your ancestors and mine crossing
paths, setting in motion
our friendship generations on.
I navigated the streets too steep,
narrow, and unassuming
for the google-cars that take wrap-around
photos to satisfy the curious or nostalgic.

When Jeanie lived at 34 Jackson
did she cross Eagle
and walk with Ruth down
Bracewell toward the school?
When did the neighbors
at 27 Hudson put
up a sign, Established

in 1860? Surely
not back then, when
the hillside houses
were only middle-aged.
Did she sled down
Veazie with Mary
who lived parallel

on Williams? Did the imprint
of these ancestral
connections somehow
draw us to each
other as college roommates,
forty-year friends clinging
to each other on steep climbs?

The next poem was an experiment with line breaks, based on our discussion of Charles Bukowski’s Fingernails; Nostrils; Shoelaces.

Two and a half hours

The line stretched from
St. Paul’s Church down
the block to the library
voters spread six feet apart
waiting for
their turn to enter
go downstairs
wait
give their
name, sign the
tablet with a
disinfected stylus
watch the printer spit out
their ballot
sequester together in a
cubicle, completely fill in the
bubbles for their
choices with a
black felt pen
feed their ballot into the
machine, wait for
confirmation, walk back to
their car
go home and
hope.

This final poem is a failed attempt at the American Sublime, a la Hart Crane’s The Bridge: To Brooklyn Bridge. I think I managed a bit of the awe component, though.

For Jillian Grace

On my screen, you appear
smaller than your 2.9 kilos –
kilos because, from the start,
you are a British baby,
unlike your older sister, born
in the same upstate New York
hospital as your mother,
just miles from where
I, bleary-eyed at dawn,
stare at your first photos.

Your dark hair peeks
from under the knit cap
meant to keep you warm
as you adjust to air,
not the tiny ocean
that had been your home
for thirty-seven weeks,
your cheeks rosy
against the white blankets
and Winnie-the-Pooh sleeper.

I long to cradle you,
to breathe your newborn scent,
stroke your soft skin,
feel your fingers
wrap one of mine,
hum quiet lullabies,
claim you as my granddaughter,
but you are thirty-five hundred miles
and a pandemic
away.

I hope you will take a look at our anthology. Feel free to comment here or on the Binghamton Poetry Project site. Enjoy!

What do you think of when you see a Warhol Campbell Soup can painting?

You can see responses from seventeen writers, including me and fellow Boiler House Poets Collective member Kyle Laws, at the link below. Many thanks to The Ekphrastic Review founder and editor Lorette C. Luzajic for the always interesting Ekphrastic Writing Challenge features. Enjoy!

https://www.ekphrastic.net/ekphrastic/ekphrastic-writing-responses-andy-warhol

email, email, and more email

Since I first started using email over twenty years ago, I have had the same email address. It was initially set up through Roadrunner, affiliated then with Time Warner although it has since moved to Spectrum.

I’ve used this email address for everything from personal correspondence to charity donations to newsletters to subscriptions to poetry submissions to online shopping. It has been registered in hundreds of places over the years. The address has occasionally been unreliable but, given how widespread it was, I was loath to change it.

Now, however, it has lost or delayed so many things that my hand is forced. I got the October newsletter from the Biden campaign and an email about planning my vote after election day. I sent a poem to my local poet circle for workshop twice without anyone receiving it. An email from the resolution center working on refunds for our cancelled trip to London went astray and almost resulted in the case being closed prematurely.

So, I have embarked on the the painstaking process of migrating from my one-stop email destination to a constellation of gmail addresses for different purposes. There is one for poetry related things, one for shopping and business contacts for B and me, and one for all the rest of my personal and organizational contacts.

The sorting is proving to be a long and complicated process. I realize I am still in the early stages of it, but it is beginning to take shape. Daughter E taught me how to keep tabs for the three different gmail inboxes open simultaneously in my browser and I have a fourth with my original inbox, all of which I am getting into the habit of monitoring several times a day. [Note that none of these is my long-neglected blog email topofjcsmind@gmail.com. The recommendation still holds that if you want to contact me by email that you leave a comment telling me you have done so, as I will see the comment and know to check the inbox. Some year or other, I’ll get to making it usable.]

What is taking a ton of time is changing the address on email lists. Some organizations have a straightforward process with a link for updating at the end of their email. Click the link. Edit your address. Save changes and you’re done. Sometimes, they email you a confirmation link for security reasons. Other times, the setup is that they email you an edit link first. Both guard against unauthorized changes.

Some sites don’t offer a way to make changes. I’ve had to subscribe with a new email address and then unsubscribe the old address.

Others allow you to update your online profile at their site, but I’ve run into lots of problems doing this. Sometimes, the site will let you change your address but then won’t update for the emails it sends you. Other times, it seems they won’t save your preferences for how often you want to hear from them. And some seem to just stop sending emails altogether.

This endeavor is also making me consider each email sender and whether or not I want to keep hearing from them. As I have posted about previously, I have been trying to tame my inbox for some time. I’m hoping the time that I’m investing in this organizational effort will eventually make it easier to deal with my email and give me more time for other things.

I wish I could figure out when I will arrive at that “eventual” point.

So far, I’ve done very little about changing my email for personal contacts. Personal messages seem to get through to my original email inbox pretty reliably, although occasionally one gets delayed for days or lands in my spam folder. Perhaps, I’ll draft a bcc email blast at some point, although I’ll probably have my poet-friends use my poetry address rather than my general one and friends of both B and me our joint address.

Something else to think about.

Who knew email could be so tiring?

the pleasures and dangers of poetry readings

One of the opportunities that has arisen during the pandemic is the easy availability of poetry readings, as many institutions have re-imagined their live readings as online events.

I admit that I wasn’t in the habit of going to a lot of readings in-person before the pandemic. They are usually in the evenings and I try to keep as much evening time reserved for family as possible, so it was difficult for me to commit to the transport time plus the reading time. That is less of a factor now that I can attend and still be at home, in case something comes up that needs my immediate attention.

I’ve had the opportunity to attend a virtual book launch for fellow Boiler House Poets Collective member Erica Bodwell’s Crown of Wild. I heard one of my Smith College poetry godmothers Anne Harding Woodworth read from her new book Trouble, as well as her previous books. I’ve tuned into readings sponsored by the Smith College Boutelle-Day Poetry Center and the Binghamton University Center for Writers. I have even participated in an online reading with the Binghamton Poetry Project.

It’s been wonderful to hear poets reading their work and I’ve also appreciated the opportunity to hear poets speak about their lives and work in interviews or question and answer sessions.

I admit, though, that these discussions, particularly when they take place in academic settings, can shake my sense of myself as a poet.

I consider myself to be a community poet, meaning that my work is informed by my experiences much more so than by my academic background. While I have been blessed with learning about craft through the Binghamton Poetry Project, the Broome County Arts Council, Sappho’s Circle, and my poet-friends of the Grapevine Group and Boiler House Poets Collective, the last time that poetry was a significant part of my academic work was in grammar school, many decades ago. I’ve also learned a lot by reading different poets.

In comments in their readings, poets that I admire talk about the wonders of writing in forms like sonnets or villanelles and how this focuses their writing.

I’ve tried variously to write in form. I’ve never managed to write a traditional sonnet or villanelle that was worth making it out of my notebook.

The thought of trying to write a decent sestina is enough to make me break out in hives.

I do a bit better with forms that have made their way into English from Japan. I have written some successful haiku, tanka, and haibun. I am especially fond of tanka and have included several in my chapbook manuscript, which is still in circulation with publishers and amassing an impressive list of rejections. (Note to self: send more submissions.)

When I am feeling shaken about not having formal training, an English major, or an MFA with all their attendant skills and expertise, I try to remember the times that my poet-friends have reassured me that, although my poetry is different, it is still worthwhile – and that I am indeed a poet.

Now if I can just find those presses and publishers that agree…

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.