Tacos and Tiaras

I'm just being all-zen-and-shit

Reflection

Let It Be

Compassion, Confessions, Family, Kindness, Love, Mindfulness, Reflection

Love is the condition in which the other person’s happiness is essential to your own.”

– uncredited

My previous blog post, Moment to Moment, was based on Facebook memories from 19 December. The past three days, I looked at my Facebook memories from 20-22 December. I had waited until the 22nd to announce that Mommy moved to a Hospice room on the 20th, and even though I don’t have a Facebook memory to remind me why, I still know why I did that. Maybe it wasn’t my mom’s happiness that was essential, but her dignity was.

I remember listening to the Hospice representative’s explanation of logistics combined with patient care, and she had her gentle way of leading us to understand why setting up a hospital bed at home was an option no longer available for Mommy.

By the 20th, my family realized that maybe within hours, maybe within days, my mom would be dead. Her medical team could only state what to expect in the natural flow of her condition, but the only timeline that exists is the patient’s own. Knowing exactly when was not going to make a difference in how we treated Mommy. And the best we could do was get my son home from California as soon as possible. I was in that ready/not-ready state of mind and heart until my heart reminded me to focus on my mom.

The purpose of a doctor or any human in general should not be to simply delay the death of a patient but to increase the person’s quality of life.”

– Patch Adams

I intentionally did not mention Hospice on “Facebook blast” not only because Jack reminded me about one’s dignity, but also and most importantly, because my mom deserved better than for people to mourn before she was even dead, and it wasn’t about me.

My family had already contacted everyone who needed to know that my mom wasn’t going to recover, and if they wanted to and were able to, they were welcome to visit Mommy. I was not going to deny anyone of spending time with her both for their benefit and for my mom’s.

Facebook memories… my mom’s final days in social media posts…

I reposted videos of my parents that I had taken earlier in the year in which my parents recall the story of meeting and getting married a couple weeks later and my mom’s response to “What’s the secret to a long marriage?” (By the way, she scoffed, “That’s a silly question, Eileen.”

I posted pictures with a lot of longtime friends-like-family, and I remember how my mom even from a hospital bed still seemed to try to do her best to be that sweet and kind hostess she was if you came by the house. I remember feeling slightly frustrated that she was trying to use her energy to entertain visitors, but now it occurs to me, what was the point of saving her energy? I mean, it’s one thing to say, “Rest so you can heal faster…” but resting so you don’t die so soon? Or maybe at the time I didn’t realize I wanted her to rest because she was already struggling to breathe in short gasps, and it was getting worse. And I felt my heart hurting as I watched her begin to suffer, even if pain medication was keeping her comfortable.

One of the pictures is of an escape to Wegman’s with my Besties, just to breathe air outside of the hospital. I was actually pretty good at taking care of myself – sleeping and eating – because I understood I had to do that in order to be there for Mommy and my family. And thanks to the daily snack cart and especially to visitors who brought food, I was eating well.

I felt guilty sometimes because I had not lost my appetite, and even when you’re not trying to compare your situation to someone else’s, if all you know is what others have said about their experience, you end up with an expectation of how things should be. There seems to be a societal norm of “I can’t eat!” during a stressful time. Then again, three years earlier, a few days after a car wreck that resulted in my vehicle being a total loss, my son exaggerated: “You really don’t stop eating after you’ve been through a trauma.” lolololol He’s kinda right, but I feel more like I’m middle of the road, neither starve nor binge.

Over those three days before my mom died, I shared some of the dry-erase humor that I was scribbling on the board in Mommy’s room because some of the medical team wasn’t keeping up with it. For example, some of my mom’s “Goals for Today – Next Pain Medication” were “4:20 fat budz”, “the ganj”, “because these kids are giving me a headache”, and “spark it at 4:20”.

Maybe part of it was humor as a defense mechanism; maybe part of it is being a lightworker (before I knew what that was) and naturally changing the energy of a room; but I know my heart guided me to focus on my mom.

Along with the Patch Adams quote, my Facebook memory on 22 December 2018 states:

My family and I appreciate all of the expressions of kindness and love the past couple of weeks. On Thursday afternoon, we moved Mommy to a hospice room so she can rest comfortably in her final days. She decided and documented her directive 18 years ago. This is a beautiful gift to us so we are not left wondering what she would want or if we are making the right decision. As she always emphasized, “Let me go in dignity and not with all those tubes and that ‘lipe’ supports.” 😉

Mommy still shows responsiveness to our conversations and antics through her small movements. She loves silly humor. She loves laughter. She loves the fellowship and love surrounding her. What you put out there comes back to you threefold. You are loved, Mommy. Always.”

– 22 December 2018 Facebook memory

I remember “knowing” that Mommy didn’t have much time left, and by making a statement, Facebook friends wouldn’t be surprised about her eventual death. I felt hopeful that they understood and respected my family’s decision to keep Mommy’s business private for a few days. I felt grateful to everyone who showed their support, but what I didn’t expect were kind words, telling me that I inspired them with how well or gracefully I had been handling all of it.

I have not changed my mind or heart on this – how we treat each other should not be determined by how much life is left.

We truly to do see what we want to see. Some people may be able (whether by knowledge, experience, or intuition) to see beyond the information they receive. Some people may have thought my mom was going to recover because we were still “having a good time”; others may have picked up on the unsaid, especially with the absence of my mom in group photos even though visitors were there to spend time with her.

My point is we always have a limited perspective on someone else’s situation. We only see what others show us, and even then, the way we choose to see/receive it is influenced by our own experiences, ways of thinking, and all the stuff that makes us who we are. I’m not always all-zen-and-shit. I still have moments of feeling angry over past situations when someone else’s ego was looking for the worst and came up with misinformation or a false conclusion, and my ego wants to set the record straight. Let. It. Be. The right people in our lives don’t need for us to clarify or explain. We don’t need to defend ourselves.

I owe no apology to anyone who told me they felt upset that they weren’t in the loop or that they would have done something differently if I had told them my mom was dying.

I also had moments when I was not all-zen-and-shit as my mom was living her last days, but again, I kept it off Facebook because it wasn’t about me. My family was there for my mom and for me. 22 December was the night I broke down. All of us – Chief Daddy, my brothers, my Keets, and I – were alone with Mommy, gathered around her bed, telling her it was okay to go. I really don’t remember what sparked it, but I fucking lost it, feeling everything in some mess of heart and ego. My dad was telling me that’s enough when I couldn’t stop crying, my face buried in the blanket covering my mom’s belly, and all I could get out was, “I hate seeing her like this!”

I was not selfless. I was not graceful. I was not strong. I was not letting it be.

I felt like I reverted to being a spoiled child, disappointed by an unmet expectation. I tried to let it be, but I couldn’t take much more of witnessing her suffering. I know it wasn’t about me, but I couldn’t understand why she would hold on to no good quality of life.

I may have felt angry after all the stories my mom had told me about witnessing someone’s transition. She made it sound like this lovely moment of telling someone they could let go of their life, and BOOM! last breath. She had held on for my son to arrive, and he was with us…

So after we all said our goodbyes and she was still hanging on and laboring to breathe, I know I was over it. I don’t know how I didn’t scream at her, “JUST FUCKING GO!”

I don’t know why I believed she had any control over dying.

Or maybe I was too short-sighted to know she did have control and was holding on for someone or something beyond what I knew.

Luceat lux vestra.

Moment to Moment

Change, Compassion, Family, Friendship, Gratitude, Hope, Kindness, Love, Mindfulness, Reflection

There are moments which mark your life. Moments when you realize nothing will ever be the same, and time is divided into two parts: before this and after this… Sometimes you can feel such a moment coming. That’s the test, or so I tell myself. I tell myself that at times like that, strong people keep moving forward anyway, no matter what they’re going to find.”

– John Hobbes, Fallen
View of the stairwell from the Garden Floor of Sentara in Woodbridge, Virginia

Some of my earliest memories center around Henry Mancini, specifically his theme Moment to Moment for the 1966 film of the same title. I remember watching Mommy put the dictation tape recorder close to the television speaker to record it. I remember the silver label of the black cassette tape, down to my mom’s writing in all capital letters, MOMENT TO MOMENT.

My Facebook memories of 19 December 2018 start with the image of the stairwell at Sentara and end with pictures of me and the next generation at Silver Diner on which I wrote, “Still my fave diner because of the table jukeboxes.” The stairwell pic may be just capturing a moment of taking an artsy picture, or maybe it was a moment of looking up and needing a moment to myself. I dunno. It’s certainly now an image for this blog post.

I deliberately did not write Facebook posts about my mom from the night of 18 December into 19 December. Some of it was because of the uncertainty of my mom’s condition, often changing from moment to moment, but it was mostly because of something my friend, Jack, noted when our mutual friend , Connie, went into Hospice care. His words stuck with me, and I followed his lead in not falling into the social media trap and reverted to “when people were allowed to die quietly and with dignity, surrounded by their families, and not have play by plays generated”.

I reckon it’s understood that our family, which includes closest friends, were all in the know for “real time updates”. I feel like my corporate life as a communicator played into how I shared information, and “tiers of need-to-know”, sometimes based on their roles or knowing who needed a heads up in order to make plans.

I felt grateful for the care and kindness of those who got in touch with me directly, off social media, to let me know they were praying or thinking or were offering to help out with anything in whatever way my family needed. I even felt a little surprised and comforted by unexpected people who contacted me, not that I had any expectations, y’know? Sometimes you don’t know that you matter to someone until they tell you.

I remember feeling that the best I could do was to share only what didn’t leave someone with more questions, especially because I wasn’t going to answer questions. And I feel so grateful for family and friends who got it without saying – I appreciated their concern, and it was nothing personal if I was not staying closely in touch, but Mommy needed my full attention.

On a related note, I more and more appreciate people who can see past their ego. Over the years I’ve dealt with people who arrived at their own conclusions based on their own perspective without ever asking me questions, people who expect the worst out of others and find it even without basis, people who take it personally and feel offended if I didn’t keep them in the loop on my business. My. Business. I also appreciate people who know that if I don’t ask about their business, it doesn’t mean I don’t care; I just know it’s not my place to ask, and when they have something that I need to know, they’ll tell me. And if I do want someone to know I care, then I’ll simply let them know I’m thinking of them without asking questions. I feel grateful for the people from whom I learned how to leave my ego out of situations where it doesn’t belong.

The things I remember about 18 December 2018 are feeling very happy and hopeful for Mommy recovering. Chief Daddy and I had been going back and forth from the hospital everyday since I arrived in The Hoodbridge a few days before, and I feel like we were getting ready to settle in for the night when the landline phone rang.

Maybe you’ve been there…

…in THAT moment…

…when you “just know”…

…you know nothing will be the same.

You don’t know how to explain that the ringing phone sounded just a little different. Or maybe it’s because at that time of the evening, a phone call is likely to be something important.

I answered the call, and sure enough a nurse advised us of Mommy’s latest update – her heart rate had spiked and some other stuff that I can’t remember now. They were monitoring my mom closely and would call again if needed.

Medical professionals can only tell facts about what they know presently, and if they’re able, they may be able to offer more facts about possible changes, what to expect… and leave it to the patient’s family to decide what they need to do.

I forget what the nurse said, but I remember “feeling” what the nurse was not saying. I picked up on how she was saying it, careful not to alarm us, yet having care, compassion, and concern for my mom and my family. At that moment, Mommy was doing okay with medication and whatever else they were doing to help her. Her present condition did not make it necessary for us to be there with her. The medical team couldn’t predict how or when my mom’s condition would change; however, if her condition declined to the point at which she could not breathe on her own, they would not be able to intubate her again because of my mom’s DNR (do not resuscitate).

I remember telling the nurse that I understood.

After I got off the phone and relayed everything to my dad, he and I were both quiet for a while. Chief broke the silence. “Do you want to go to the hospital?”

I felt relieved that we were on the same page without talking about it. Neither of us wanted Mommy to die alone if that were to happen overnight.

I really can’t remember if I sent texts to my brothers and the Keets right away or if I felt I should wait because none of them were in a position to do anything immediately. If I had to decide today, I would have let them know because I feel like it’s their right to have the information and receive it and do with it as they naturally would.

I sent a text to summon my parents’ priest, my eldest brother, Fr. Ed, knowing that the sacraments are really important to them. I’m willing to bet my thought was that I wasn’t sure what was going to happen, but I didn’t want to be a jackass and be the reason my mom was denied of something that mattered to her.

I can still see Fr. Ed arriving at my mom’s hospital room, slightly hurried and mixed questions on his face as if asking how Mommy was doing or if he was too late. He had not read my message until a few hours later and came to the hospital immediately after. I still admire my brother for seeming almost stoic yet professionally compassionate if that makes sense. How does one put personal aside when needing to complete professional tasks?

Fr. Ed’s presence, prayers, and administering of the sacraments defined my mom’s moment – the one in which she knew she was not expected to recover. That was how my mom’s day started on 19 December. I don’t remember if this day was also the first time the hospital’s social worker approached us about hospice/palliative care.

Facebook memories show me that my daughter and my son’s girlfriend arrived, and we went to dinner. My son was at Twenty-nine Palms, California, and at some point, we enlisted help from the American Red Cross to bring him home in the coming days. My brother, Earle, had already visited Mommy earlier in the week while passing through and finishing the final performances of The Sound of Music national tour before their holiday break.

That’s all I remember specific to 19 December, and 19-22 December may as well be all one day… and one post a few days from now.

Luceat lux vestra.