November 16, 2025

I’ve been away a little while, folks. The last time I posted, it was about the pain of anticipatory grief and dealing with the loss of the imagined future.

I’m writing this the day after we’ve laid my aunt to rest. She was more than my aunt–she was the closest thing I’ve known to a grandmother. And her late husband was the closest thing I’ve had to a grandfather.

This loss was fast and slow simultaneously. She went to the doctor about six weeks ago for painful, prolonged gas. It turned out to be a pancreatic mass, and as a nurse, I knew this was not going to be good news. We waited weeks for the biopsy, to have other scans and tests done, all the while having hints that this was metastatic, but incredibly slow confirmation. And quite honestly, not a good pain management plan. The delays in diagnostics meant no provider really felt ownership over establishing an effective pain management plan…and my aunt suffered from the delays. She went to the hospital about two weeks ago when she almost felt, was hypotensive, and visibly dehydrated. The cancer had taken a toll on her appetite and intake, and the damage was already evident.

After five days in the hospital, the family elected home with hospice care. We had learned the outcome of the diagnostics while in the hospital–incurable, treatment would only (maybe) prolong life, and it would likely be uncomfortable and difficult getting back and forth to the appointments. And bottom line–she couldn’t sustain intake enough to maintain her mobility.

She passed about 10 days after we took her home with hospice. We had about 2 total alert days with her once we took her home. But she never complained of pain again. She just comfortably rested until it was her time to go. She was surrounded by family the whole time. It couldn’t have been more painfully beautiful of an ending.

The toll on me I imagine is complicated by my neurodivergence, specialized knowledge, and my own past experiences with grief and loss. It may be none of those things–I have no actual way of knowing.

I’m the only nurse in the family. I’ve been in crisis and problem-solving mode for six weeks now. Luckily, that’s where my AuDHD brain functions best, but it takes a physical toll. I’ve fielded the questions for six weeks. I’ve helped my cousins through the really hard questions–

Do you think this is going to be bad news?

How do we make her eat/drink?

Should we do chemo?

Her blood pressure is really low, do we take her to the hospital?

They are having us decide between treatment and palliative care. What do you think?

Then, once the family chose hospice…every day: How much longer do you think she has?

She lived about three days longer than I estimated. We truly never know. I was there most days, teaching my family how to provide her physical care. Telling them what to ask for from the hospice nurse. Coaching them on what to expect. Cleaning and changing my aunt, whom I realized I’d never seen in the buff. Telling her (when she was still alert) to not worry about it…she herself had changed everyone’s diaper in the room at some point.

It was so hard to see her transform so fast. To watch her cheeks sink in from lack of intake. To watch her physical ability fade from ambulatory to completely dependent in a matter of two days. To watch her as her mental acuity slipped and eventually. The time before her hospitalization was painfully prolonged because of her suffering. The time after the hospital was warp speed.

I sit here, still unable to fully release and cry about it. What is up with that? A little over a month ago, I fucking sobbed over my professional disappointment….why can’t my body/brain allow me to release this grief? It is definitely in there. I feel the tears well up and they just do not release. I feel the heaviness of grief in my body. It is hard to eat. I just want to lay in a cold, dark room–my classic decompression go-to.

As a neurodiverse woman, and perhaps just as a human being…I feel so conflicted over the mismatch between my physical grief reaction and society’s expectations. I WANT that release, for myself, but also to show others I am a caring human being. Rationally, I know this is not necessary and that I’m allowed to grieve in whatever way my body/mind allows. But I found myself at the funeral yesterday yearning for that connectedness of crying at the same time my family was crying. It doesn’t mean my grief is not like their’s…but there’s something missing from the experience for me by not being able to grieve similarly.

I spoke at the funeral. Who the fuck have I become? I’ve gone from a quiet, shy woman afraid to speak her mind to someone that presents at national conferences, leads a department…and volunteers to give a eulogy? WTF? When did this change happen and how? I did a great job–my goal was to share sweet memories, share what she meant to us, and make family giggle here and there. I wanted to do this so my cousins could just sit and remember their mother. I also think I did this to be able to say all of the things I wish I’d said aloud to my aunt to her. Those thoughts and loving memories needed to be aired into the universe.

With the funeral came way too many hugs, way too much obligatory peopling. So, I think between the crisis management, multiple difficult and delicate conversations over the past couple of weeks, lots of social interaction (albeit with family), and the actual grief of this loss, my body is in shutdown status.

I can’t cry right now because I’ve slowed my operating system for survival. I’ve exhausted my mental energy making eye contact, carefully crafting answers to delicate questions, guiding my mother (who is on the precipice of dementia) through this loss, and just navigating the daily challenges of raising a young neurodiverse family, working a demanding job, and continuing to slay my graduate studies.

Where’s the Girl Scout badge for “Rocking the Shit out of the Hard Parts of Life?”

I will get there. I think as a neurodiverse person, I have to intentionally extend grace to myself to allow the grief to wash over once my body’s system has finished cooling down.

Powering down now.