January 26, 2018: Regret

One year ago today, Matt left Columbia by ambulance to head to the hospice in New Jersey. Days earlier, while I’d debated between inpatient and home hospice, Matt’s father and I had visited the location. It was quiet and peaceful, and the people were kind and warm. It would be the place where we (G, H, and I) would spend the majority of our hours for the next eight days. Matt had a large private room at the end of the hall with an expansive, east facing window and a view of the courtyard. It was a room filled with sunshine, without the shrill shrieks of hospital machines and other patients.

Matt’s transport was supposed to leave at 10 a.m. That had been the plan. I knew hospital plans were always subject to delays—nothing ran on time; I’d learned that lesson a hundred times in the twenty months since Matt’s first brain surgery. But somehow, for some reason, I thought in this, for this, the timeline would hold. 10 a.m. would mean 10 a.m., if only because Columbia needed Matt’s space for another patient.

I’ve written about regret a handful of times. The regrets have always been minor. But I’ve hinted that there is one regret in this story that isn’t minor, that has haunted me for nearly a year.

On January 26, 2018, believing that Matt would be transported at 10 a.m., believing that meant he’d be in his new room by about 11 a.m., I made a decision. I decided not to drive in to Columbia in the morning. I decided to pack pillows and blankets, picture frames and stuffed animals, anything that might make Matt feel at home and feel surrounded by love. And then, I took ten minutes.

For ten minutes, I laid down in a patch of sunlight slicing across the playroom floor. I laid on my back and let the truth of the word “hospice” sink in. I stopped running on auto-pilot and let tears roll down into my hair. I let myself feel tired and scared and sad. I let myself break down and fall apart—because I knew I wouldn’t give myself the chance again. That afternoon, I’d have to have a conversation with Matt, try to explain to him that we weren’t fighting anymore and hope he understood. That night, I’d have to talk to G and H, explain the word hospice and tell them their father was dying. And I couldn’t fall apart for any of that. I knew G and H would need someone to hold on to while they fell apart, they would need a steady presence to cling to in order to keep them from disappearing into that darkness. And also, I took ten minutes because a part of me couldn’t quell the belief that had crawled in the day before—that Matt didn’t want me there. Because his anger had found its way to me so many times, I couldn’t help but believe he’d have a better morning without me.

And I’ve regretted those ten minutes for so long. Because instead of being with Matt for his last hours awake, I fell apart. When he needed me to be strong, I couldn’t be anymore.

After those ten minutes, I drove to the hospice. I remember pushing the button and riding up the elevator; I remember opening the doors to the hospice wing and walking down the hall, carrying bags of supplies, while trying to keep my head up. I remember setting up his room. Picture frames and drawings by G and H on the windowsill, his pillow and blanket on the bed, clothes in the closet, food in the mini-fridge.

And then I waited. And the hours rolled away and each time I called, I heard that Matt hadn’t left, but he’d be leaving soon. And I was paralyzed by indecision–analysis paralysis. If I drove into the city now, I might miss him on the way, and then I wouldn’t be here when he arrived. So I waited. And badgered the nurses at Columbia one last time.

When Matt arrived, so much later than I’d expected, he was asleep. Matt didn’t wake as he was transferred from stretcher to bed. The nurses speculated that Columbia had given him a high dose of pain killer for the ride, and he’d probably sleep through the night. I stayed with him until his parents arrived—never having a chance to explain where he was—and then I went home to G and H, to have the hard conversation I’d been dreading all day.

I had worked with G’s and H’s therapist on what to say. True to my diligent student nature, I took notes during that phone call and then referred to the paper while I talked to G and H. We talked about hospice and what it meant; I told them that unlike a hospital, they could visit for as long as they wanted in hospice. And because I didn’t know Matt wouldn’t wake up again, we talked about the things we could still do as a family, the moments we could still share.

In retrospect, I think they’d known something was very, very wrong for weeks, and the not knowing had been harder on them, had caused them to act out. Once they knew, even though the news was devastating, they could begin react, in whatever way they needed to. For G, that meant crying and packing a suitcase of things to bring to Matt in the morning. For H, it meant taking a breath and saying he was sad, but that he wasn’t going to think about it. Afterward, we (G, H, and I) curled up on the couch together and watched T.V.—though I can’t even begin to guess what we watched. Something about G and H felt settled that night—sad, but calm, and I realized that it was true when people say kids perceive more than we believe.

Regret can be a poison. Regret can be its own invisible monster that corrodes and destroys. And for a year, I’ve been working to forgive myself for those ten minutes, for making that bad decision. I’ve tried to convince myself that I couldn’t have known that morning at Columbia would be Matt’s last awake hours—just the day before I’d believed the doctor’s prediction of weeks had been too dramatic; Matt had been so alert, so clear. Later, after February 3rd, when I spoke to Columbia’s neuro-oncologist, she said Matt had been awake when he’d left—she’d hedged, hesitated, and I got the sense she wanted to protect me from the details—but she’d been stunned to hear he hadn’t woken up when he arrived in hospice. Matt was always surprising us.

I will probably always wish I’d made a different choice one year ago today. But also, I will always be grateful the choice I made allowed me to have the strength to set up a room, which, in retrospect, was as much for G and H as it was for Matt; to stand strong beside Matt and be one of the first voices he heard in hospice, even if not consciously; to be the steady presence G and H needed when their world flipped inside out.

Regret is a part of this story. But maybe it’s only a poison if you let it be.

5 thoughts on “January 26, 2018: Regret

  1. Dear Elaine,

    My name is Linda Limperis. I lost my husband to a glioblastoma in October of 2015. I recently moved from Massachusetts to New York City. I have met a few ladies who are also glioblastoma widows. One of them gave me your website and I’ve been following you for the last 2 months. My children were in their twenties so my story is of course different from yours but in many ways it is so so similar. We lived in extreme hope up until the time my husband went into a coma. I feel your pain to the core. I wish I were with you right now to give you a hug. You are very eloquent in your words ( not my strength) and you describe my feelings so well. I have tried several times to write to you but my tears were overwhelming. Today through my tears I am determined to send this note to you. I guess I just want you to know that I understand , I feel your pain, and I would love to meet you someday. The group of wives here in New York City have been meeting for coffee once a month just to get together. We actually are doing that tomorrow afternoon. I know that this week is excruciatingly difficult beyond words. Perhaps you would like to join us next month.

    Today your blog really hit home. I know in my heart of hearts you made the right decision. We always do with the information that we have. Through many grief counselors and grief books, I have learned that we must forgive ourselves because everything we did was out of love. I also know from experience that Matt heard every word you said even while he was unconscious.

    You have a beautiful story to tell- thank you so much for sharing. You are an amazing woman and an inspiration to so many.

    I am holding you close in my heart everyday but especially this upcoming week.

    Sending you much love and strength,

    Linda Limperis 774-991-1073

    PS my daughter has written many blogs about her dad that I know u would relate to – let me know if you are at some point interested in reading them.

    On Sat, Jan 26, 2019, 5:57 AM Reconstructing A Year In Hope elainesara posted: “One year ago today, Matt left Columbia by ambulance to > head to the hospice in New Jersey. Days earlier, while I’d debated between > inpatient and home hospice, Matt’s father and I had visited the location. > It was quiet and peaceful, and the people were kind” >

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    • Linda- thank you so much for reaching out. I’m always sorry to hear when my story makes other people sad, but I also know there’s something comforting in knowing your experience isn’t as singular as it seemed, that you’re not alone, so I’m glad there’s that aspect, too. I have heard about the group in NYC… and this week wouldn’t work but maybe another month will.

      I’d love to read your daughter’s blog if she’d like to share.

      All the best,
      Elaine

      Like

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