Dad Archives - Art & Words

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

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

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.

New Beginnings

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