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Dad

We had another few months with my dad. We hurried down to Connecticut and were able to spend solid weeks at a time – only returning home for a few days or a week in between – and I was able to spend hours every day by his side. What they had called about in September turned around (sort of)… We had been told he likely only had days or possibly a week or two, that his body wasn’t responding to treatment, and we needed to start hospice.

Hospice came in, and they were pretty wonderful. The on-site care team was already great, but the hospice team provided more one-on-one care and focused comfort measures, as well as significant comfort to us.

Honestly, between September and December, it was amazing. He regained a clarity that no one could explain. He of course still had dementia, and so there were definite moments of confusion as there had increasingly been for several years, but at times he acted as if he was coming out of a coma or something – suddenly newly aware of his surroundings, as well as a distinct familiarity with all of his own things. Requests for certain items of his, inquiries about people he’d previously forgotten, a clarity of thought and speech; he even looked more like himself than he had for a year.

This of course, ultimately made losing him all the more difficult. We had a gift, beyond the few days they had told us to prepare for, we had months, and those months were rich. I feel blessed to have had that time with him. Those months also gave false hope, as several nurses told us he might actually “graduate” from hospice, because he was doing so well. I had just started to think, “maybe he will make it to his next birthday…”

My husband and I came home for just over a week to get our bivalent shots, which we had thought (correctly) would be better to be at home for. When we returned to CT to see my dad, he had just taken ill again, though with something different. Over the course of just a few days, things, well, things became terrible.

He passed away on Sunday the 18th of December. There are a lot of things you tell yourself (that you know you are supposed to tell yourself), that you hear others tell you to remember: at least we had those last few months, at least we were back in CT with him, at least I got to tell him everything, not only once but over and over to make sure he knew. Grief doesn’t reason.

… I am heartbroken.

Today was the first day, honestly, that I have been able to focus on work other than the most mundane. I had another sleepless night, after more dreams about funeral preparations (the funeral is now thirteen days behind us, but each night something new presents itself that I must attend to), gave up and got up at 4:00, and made a list of things I had to get to. The pain is there, the tears are there, but I got on with the day anyway.

There is a pain that must be unique to caring for someone over the course of many months or even years, to witnessing their suffering and the deterioration of their health, that brings its own trauma, on top of the loss itself. I always knew that when I lost my dad it would hit me hard… at times I wondered if I’d even be able to cope. I am coping, functioning fine – I mean, I’ve had everything under control, nothing is going undone – but yeah, it has been a shock and a trauma, and I don’t think I will “get through the grief,” so much as I will now get through life with the grief.

Well, that’s the first I’ve really written about it publicly. I have no idea what I will share here, regarding this loss.

If you have experienced a similar loss recently and feel like you want to reach out, please don’t hesitate. I personally have found comfort in sharing with others.

His obit (at my little genealogy blog): Larry J. Brill, my dad

Thanks for reading,

~ Nellie

Photo: just a happy memory, one of the very fun times we had just the two of us, we had an invite out to Martha’s Vineyard to stay with a theatre friend of his for a week in 1982.

Waiting

Personal

I’m currently waiting to hear from one of the nurses caring for my dad. They called me last night to tell me he was suddenly ill, and I might need to scramble to get down to be with him. They also suggested I begin considering hospice care for him. Things are feeling pretty disconnected right now… I guess that’s natural (?), as I’m about three hundred miles away, and uncertain as to his condition.

So much has been going through my head, and my heart, these past months, deepening over the past weeks as I’ve witnessed his further decline in health (physical and cognitive). It is a path through sadness, anger, frustration, confusion, yearning, and doubt.

Dementia, seeing what it does to him, feels like a theft of his mind, and an assault on his spirit. It is heartbreaking. Beyond the personal, is the political, or the social… that we (seem to) pay very little real attention to the process of dying, focused so much on the superficial. And it strikes me that there is very little our society does these days to truly honor the dying, or to offer answers to the living.

I don’t know what is going to happen over the next few days. I am still hopeful.

Thanks for reading,

~ Nellie

The Toughest Part

Personal

Almost every day I receive a comprehensive email update from the director of the nursing home where my dad lives. He’s been there a couple years now, since his last stroke, and it is his home – the nurses and personal aides, custodial and maintenance staff, and his friends and neighbors there, are all another family to him. At this time, of course, nursing homes seem to be almost in a different world as we go through this COVID-19 crisis. As the numbers in Connecticut just start to improve overall – and here in Vermont they’re already getting ready to reopen the state – nursing homes continue to be in a very desperate situation. As I watch the news and see improvements around the country, my worry only grows, as the cases in my dad’s nursing home, and in his own unit, grow.

He is in good spirits. He has always ultimately answered difficulty and tragedy with some kind of open acceptance, that allows not just for the given pain and sadness, but also for the welcoming of joy and renewal; underlying his suffering is an insistence on positivity, that he must eventually come to. He doesn’t always understand what is going on in this situation. Some days he recalls there’s a virus, some days he recalls how serious it is because he’s had the news on all day. Some days he has forgotten why everyone there is on lockdown and unable to go outside or have loved ones visit. Most days he sounds good, we laugh frequently during our talks, and he may get tired of us asking him day after day, how he is feeling.

This is the toughest part of the pandemic for me, so far. I’m fortunate to have not lost income through this (at least not yet), and although the availability of food and other supplies has been a bit strained at times, I have enough on hand to not go hungry. But, this toughest part is tough enough. I have come close to losing my dad before, quite a number of times since I was very young. Just last fall the doctors at YNHH were telling me he may not survive the pneumonia he had. A week later he was home and recovering, and had forgotten his stay at the hospital. This is different, because this is so horrible and unpredictable an illness for so many, and given stay at home orders and obvious limitations in health care settings, I could not even be by his side, or even one room away.

I hesitate to even talk too much about this. I felt it was inevitable that his home would be struck with this. I don’t feel an inevitability with anything else, but I’m aware it’s all possible, of course. Unlike much else, it is truly entirely out of my control – there is literally nothing I can do about this situation to change it, and that makes me realize that giving in to worry is pointless. The worry is there, always, but it is not governing my actions.

I do sometimes wish I had the ability to meet every hardship with easy laughter, with a sort of innocent, trusting bravery. My bravery is different. Cautious optimism and confidence underlie much of how I approach difficult times, humor to some degree. I also tend toward the proactive, determined, and passionate approach. Those things will make little difference in this case. So, I am left with a sense of surrender. It seems to be all that is really available to me, as each day comes.

Thanks for reading,

~ Nellie

photo: Sandy Point State Reservation, Plum Island, Ipswich, MA; one of my favorite places anywhere.

Daydreamin’

Personal

I was thinking about this place today, the Ocean House Hotel at Bass Rocks in Gloucester, MA, wondering if it will weather this crisis and still be in business when the pandemic is behind us. It’s where my husband and I spent our anniversary last year, and had hoped to get back this year for our thirtieth. Since our anniversary is in May (and my state of Vermont is under stay at home order until at least May 15^th), that is not going to happen. Which is fine – last year was the first year we’d ever actually done anything that big for our anniversary, we just couldn’t wait to get back, as it’s a fabulous place (and off season, such as it was in the still-chilly part of May, the rates were awesome).

I’m finding myself in this kind of pandemic funk once or twice a day… as soon as I recognize it I feel a bit of shame, and as soon as I feel like talking about it, I feel ridiculously self-indulgent. But, well, this is a small personal blog, so I’m giving myself a pass. I can talk about whatever I want. Maybe in talking about it I can turn this around.

Whenever I realize I’m feeling this way, I think of my grandmother who was this feisty Italian woman who divorced her husband when my dad was only three years old, and then proceeded to raise my dad alone as a single mother. She worked extremely hard until she was in her mid-seventies, never remarrying, and not that she never complained about anything (man, did she), she never complained about hard work, hardship itself, or surviving. In fact, in the earlier days of this pandemic, I often thought of the stories she told as I was growing up, about life during the Depression. It was obvious that living through the Depression had a huge, lasting impact on her. It seemed to inform basically everything about how she continued to live for the rest of her life – and through her stories it informed some of how I have lived my life. So when I was faced with stay at home orders that included not traveling ten miles from home (when my main grocery store is more than ten miles from my home), was faced with running out of things I hadn’t thought of hoarding, and was faced with even not being able to buy seeds to start my own garden, it really did not seem difficult compared to any of the stories I’d heard from my grandmother. I’ve been extremely grateful to have access to fresh vegetables, meats, and other groceries – not always what I’d normally buy or in the same amounts (and I am being careful to eat smaller portions and use certain supplies sparingly – recalling also my gram’s stories about rationing), but I’m not expecting to go hungry anytime soon. I’ve also actually discovered a few great companies that I’m happy to support.

My grandfather, C Lee Brill, sitting on a depth charge, USS Bivin, 1940s

My grandmother’s ex-husband, my Grampa Lee, has also been on my mind through this. While my grandmother was raising my dad he was actually serving in the Navy. After they divorced he entered the service, and continued through til the late 1940s. Unlike my grandmother he was taciturn to say the least, so I didn’t get to directly hear his stories, could only piece things together through photos he decided to share, things he liked and did, and choices he made. After the service he became a truck driver for many years, driving an eighteen-wheeler up and down the East coast from Virginia through New England. I didn’t see how big a deal that was until now, when the country is absolutely reliant on the toughness and dedication of these drivers. According to my dad, my grandfather did open up finally, the last time the two of them saw each other, what turned out to be very shortly before his death. He acknowledged that he had “fucked up” in his life, but didn’t say much else.

Reminders of each of them are around my house. Right above my desk, right here in fact, are separate pictures of both of them, as well as their parents, and my mom’s family as well. In my dining room are small gifts my grandfather had brought home from Japan, and all over are things that had belonged to my grandmother – her rosary, ceramics she made by hand, a teapot, things I might not have chosen myself but obviously have meaning.

Reminders of them are also with me through this. Fighters, survivors, both of them. And I hate to say it, hate to put it this way – I’m being kind of facetious here… but neither of them a whiner or moper. When I realize I’m in this funk (and thus feel like a whiner and moper, despite the fact the TV psychologists say this is totally normal – sigh), they come quickly to mind. They made it through much, much harder than this – and from what I can tell, without any handwringing. As for the Ocean House and my anniversary… for their sake I do very much hope they survive, just like I hope for the survival of all such businesses. My husband and I have had bare-bones anniversaries before. I think this one will actually be quite memorable after all.

Thanks for reading,

~ Nellie

photo: Ocean House Hotel at Bass Rocks, Gloucester, MA; a cloudy cold day in May

Pandemic living

Personal

Looking out my door you would not know anything unusual was going on. I live on an old dirt road with few neighbors, surrounded by fields and with a view to the mountains. So far I’ve been fortunate… I haven’t lost income so I can still afford food and groceries, and so far no one close to me has shown any symptoms.

Inside, I’m pretty darn worried. Not about myself. I mean, I don’t want to get this, it sounds absolutely horrendous and there’s no guarantee that it wouldn’t have a serious outcome, but I’m actively worried about a few people very close to me, who are in high risk groups or live in high-risk places or hotspots.

Yesterday my husband and I got our first delivery from Misfits Market. This is a fantastic place that provides fresh organic veggies and fruits, that are often considered “ugly” – when I worked at a gourmet market in CT, veggies that were misshapen or somehow not deemed perfect were called “shrink,” and in the case of the store I worked at, were donated to a food shelf; many places simply throw them away. I’m perfectly happy – actually I’m thrilled – to have these veggies and fruits! We’re having most of our food delivered now, following the stay at home orders in the state and avoiding spreading whatever germs we might be walking around with (and avoiding picking up whatever germs might be walking around out there), and so far it has not been a problem at all. My biggest food-related concern was running out of almond (or some other plant-based) milk for coffee and tea, and it did start to get tough when the only fresh veggies we had left in the house were potatoes, carrots, garlic, and ginger. Misfits arrived just in time, and we were astonished by the quantity, and the quality. Everything beautiful (forget “imperfect!” they’re all wonderful), and everything we’ve tried so far has tasted great – it’s all organic.

This makes me feel wildly fortunate of course, and it’s a hard message to believe, that my staying home is somehow a great contribution to the wellness of our country. My inclination is to be out there, also on the frontlines, doing something other than residing in the safety of my home, with my favorite person.

But, it is what it is. For personal reasons I’m not putting myself at risk because it would potentially put my husband at risk, and having come incredibly close to losing him to a horrific illness once already, I am taking no chances now.

So, my biggest struggle through this is avoiding the constant stream of news on the TV and on my phone or inbox, and falling into some kind of melodramatic sense of despair. I regularly check the news for Vermont (where I am), and the tristate area (NY & CT mainly) where my dad and much of my family live. I practically count the days, knowing that as we get farther along it gets more and more likely I’ll see people I know and love among the numbers, and though that doesn’t wake or keep me up at night, it freaks me out at various random moments each day.

So anyway, above is a pic of my new veggies, which I was so excited about I felt like I was bringing home a puppy 😊 What are sort of hidden under the Rainbow Chard are lots of apples, tiny Shishito chile peppers, and a bunch of what turned out to be really delicious green radishes. I hope that whoever might be reading this, whatever you’re going through, it’s no harder a time than what I’m going through.

xoxo

~ Nellie

Celebration & Gratitude

Personal

my favorite gift: sweet new plants
and something I can never have enough of: olives!

The other night my daughter and her boyfriend had my husband and myself over to celebrate my upcoming birthday. It was a great evening, with wonderful food, fantastic music, awesome conversation, very fun tabletop gaming, and much love. In my typical weirdness, I felt then and still feel now that this was not deserved, the big, positive, warm attention.

My daughter knows me well, and her gifts to me (in addition to the above food, music, conversation, and gaming) were a jar of kalamata olives, and a beautiful little plant. I also received a cool-looking new game, Abomination: The Heir of Frankenstein, which I’d seen highly recommended in recent reviews. As we didn’t want to dive into an hour long read of the instructions for a new game, we played a long-time favorite, Betrayal at House on the Hill.

Betrayal at House on the Hill,
and Abomination: The Heir of Frankenstein

I’ve never spent this much time or energy contemplating any particular birthday or age. I am not sure why fifty is doing it, but I guess that is not so uncommon. But so far, this one has actually been one of the best.

I’ll know soon enough if fifty feels any different from any other age, but regardless, I’m letting go the worry, and just allowing the astounding gratitude I’m feeling for having made it this far, and with this much love in my life.

Thanks for reading,

~ Nellie

It’s just about giving thanks

Personal

In two days it will be Thanksgiving, and if everything goes as planned I’ll be hanging out with the love of my life, enjoying a Lord of the Rings movie marathon. This year the family is dispersed, so it’s me and him, on our own… no big cooking to do, no feasts to time perfectly, no desserts to bake one after the other… Of course I’ll miss the family (and we’ll be getting together over the weekend anyway), but at the same time, I’ll enjoy the day off together (as long as he doesn’t get last-minute, panicked emails from clients that drag him away).

Thanksgivings don’t rate highly for me anyway. I have too many memories of bleak-spirited, poorly-funded, inadequately-fed Thanksgivings. I think this may have had something to do with the fact my 32 year-old mother had died and been buried so soon before the holiday, why on earth would my father have felt like celebrating gratitude? I’ve also had my share of very weird, very awkward, and terribly uncomfortable ones… the ones where you’re not personally invited, you’re only attending as someone’s guest, and in some cases, you’re the only “ethnic” (being Polish and Italian) one there.

Nah, I’ll be okay without Thanksgiving this year. Thanks, yes, those I give, every single day. I am grateful for my life and for everyone in it, and for this amazing world, as terrible as it can be sometimes.

Thanks for reading,

~ Nellie

Center Street Cemetery

Personal

Last month my dad was in and out of the hospital several times, and I ended up spending quite a bit of time in my hometown of Wallingford, Connecticut. Though I visit often throughout the year, I don’t usually visit my old stomping grounds from when I was a kid. While I was there last month I ended up having some time to kill, so I took the opportunity to stop by a very old cemetery I used to frequent when I was growing up, Center Street Cemetery.

Center Street Cemetery Big Tree — One of the many big old trees

It isn’t the cemetery where my mother is buried, in fact, I’m not sure I know any of this cemetery’s inhabitants…

But, as a teenager I would often stop by Center Street Cemetery in between school and work. I would head over from where I lived a few blocks away, stopping on the way at the New York Bakery (as it was called) for a pastry, and then through the entranceway on the corner of Orchard and Center Streets. I would find a place to sit for a few, underneath one of the many big old beautiful trees. After, I would head off to work feeling relaxed and recharged. It was a very quiet place, despite being located on two of our town’s busiest streets.

This was the first cemetery I ever took photos in, for a high school photography class; I still have the negatives and contact sheets. It started a since life-long love of mine, combining my reverence for cemeteries with my love of photography.

Center Street Cemetery started serving the area as early as 1670, was formally established in 1683, and has a pretty intriguing history. I wasn’t the first or only person to enjoy sitting and having a bite to eat amongst the gravestones… the cemetery has twelve full size stone tables, where visitors in the 18^th century would lunch while paying their respects. The last woman tried for witchcraft in New England – and eventually acquitted, Winifred King Benham, is reportedly buried there. The paths are well worn from genealogists and historians frequenting the place now; while I was there, at least two others were there taking close-ups of stones.

I have the most fun with graveyard photos when I get to work altering them; these are just a few basic pics from the hour or so I spent there… It was a beautiful, very bright sunny day. It was nice to be back there, and it again offered a bit of peace during a difficult time.

Thanks for reading,

~ Nellie

Center Street Cemetery, Wallingford, Connecticut

New Beginnings

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Finally, I’m updating this site!… I have had a hell of a time with the previous WordPress theme, and just installed this new, much more basic one.

Yesterday was Halloween – or Samhain, which is the mark of the New Year in some Pagan traditions, and the new moon was just a few nights before. I feel like this is a good time to make a better start with this portfolio, and a real start with this blog.

Art has been important virtually my entire life… after my mother died, a counselor told my dad I would express my pain through art. Whether or not that was indeed true, I don’t know – back then I drew pictures of my mother as an angel, and I drew birds and animals, and the sorts of things little kids drew. But it was such a constant for me growing up (and my dad being an artist himself was a huge influence as well). As I got older I discovered cameras, and how much I loved taking and working with pictures as well as drawing them. So I’ve been doing that a very long time as well. And writing, well… Mercury is conjunct my Ascendant in the 12th house… seems rather fated 😉

So this is me anyway, with my little inconspicuous site. If you’ve happened upon this page, hi there.

Thanks for reading,

~ Nellie