The Final DaysRead Now
Four years gone. Never, ever forgotten.
I have not written here for quite some time, but felt pulled to do so today, on the anniversary of the worst day of my life. I imagine that it will always be the darkest day I have ever experienced, having to say goodbye to my best friend and the greatest person I have ever known. The memories of that day, and those leading up to my husband Patrick's last breath, are burned in so deeply that when I allow myself to remember it hurts as much as it did then. I feel like I am being asked to honor those days by sharing them in a way I never have before. It makes me uncomfortable to write this - so much so that my shoulders are physically trembling as I type - and even more so to think of allowing the world in. But I know that in doing so, I honor Patrick and his memory. It feels most natural to tell the story to Patrick, so that is the voice I will share this in. Many of the details are still too foggy to recall with any clarity, which I have learned is my mind's way of protecting me from the trauma. So, my disclaimer is that everything I say is to the best of my recollection. Nothing has been intentionally altered, but I know that I may get some of it wrong.
It was the day after your birthday: Friday, July 3rd, 2015. You had been receiving hospice care for about seven weeks. Remedial treatment for the Grade IV glioblastoma brain tumor that lived in your right parietal lobe had stopped. You were no longer able to walk, or write, or hold your spoon to eat your beloved Life cereal. But there had been no other major changes, nothing to indicate the end was imminent; that is, until that day. I woke up and felt something was off. You were still asleep in the hospital bed that had become a familiar part of our bedroom. I took your vitals and they were consistent with the days before. Your breathing was not labored. I got myself ready to go to a badly-needed massage appointment, but there was just this nagging, sick feeling in my stomach. I almost canceled the appointment, but my body was in so much pain from the constant strain of transferring you in and out of the wheelchair, bathing you, taking you out for walks so you could feel the sunshine on your face, and all the other things that came along with being your care partner that I knew I could not skip it. My body knew even before anyone told us that things were about to become very, very different, and made sure that I was prepared for the days to come.
Our trusted friend came over and sat with you for the 90 minutes I was gone. He was the only one who could manage your unpredictable symptoms when I was away. During that time, a hospice nurse visited. She was not your regular nurse. Our friend called as I was finishing my appointment to tell me what the nurse said: that you were in your final days, and that you might have a week left, or maybe only 24 hours. There was no way to know for sure. I remember my mind feeling shocked, but also that my body had already identified this when I woke up that morning. I rushed home immediately to take my place at your side. I would not leave the house again for the next eight days.
I barely remember the phone calls, texts, and other messages I sent out to let people know that the dreaded corner had been turned. You remained asleep most of the time, alert enough only to take your medication that by now had to be crushed up and given to you with applesauce. Any time your breathing changed I feared that we had reached the end. I only knew what Google told me about what the end of life was like from a physical standpoint, and what to expect. I did not yet know what it looked and sounded like to die.
On Saturday you had your last moments of being truly awake. You ate some of the leftover chocolate bundt cake from your birthday. We had another friend visit, and you closed your eyes. She and I began to talk, and I quietly started to cry. Suddenly, you opened your eyes and reached out toward me. You looked at me as you repeated some angry words over and over. It was like you were looking through me, not at me. I also knew it was that horrible tumor in your brain talking, not you, but I remember begging you to stop saying those words, afraid they would be the last words you ever spoke to me. Our friend calmly put her hand gently on your shoulder and said "Patrick, we are going to take care of Lisa. She's going to be okay." She said this over and over until you began to relax. The tension and sheer terror started to drain from your face, and you finally closed your eyes again. That was the last time you spoke, and the last time you looked at me.
There were so many visitors over the coming days. People came from all over to say their goodbyes. I felt like I was drowning in tears and sorrow. But you kept hanging on. In what seemed to be overnight, your strong and sturdy body began to wither away. I remember grabbing your bicep muscle one day and it was just gone. That was one of those signs I had read about, that the end was near. I was so afraid.
On Friday, July 10th, your regular hospice nurse came and confirmed that you could go any time. It still alarmed me, even though I had heard the same thing a week before. I still did not feel ready. We never had gotten to make peace with the fact that you were going to go. Your tumor had robbed us of that experience. A priest came with your family and performed last rites, adhering to the rituals of your Catholic upbringing. I don't remember what he said, but I could physically feel my heart shattering into pieces.
Beginning at around 5 PM that day, it was time for it to just be you and me. I didn't want anyone else to share those final moments. You were already being taken from me way too soon, and it felt like those hours were just for us. I talked to you about the memories of our lives together. I tried to make our bedroom as peaceful as I could: candlelight only, with our wedding playlist playing softly in the background full of Motown and Norah Jones and all of the other music we loved. I held your hand. Some of the hours, I laid next to you in bed. Others, I just buried my head in your chest and cried.
Your breathing became shallow and labored. It didn't seem like the morphine was helping. I was worried it wasn't getting absorbed into your system, though I tried to massage it into your cheek like they taught me. I was so afraid you were suffering. By now, it was the middle of the night on Saturday, July 11th. I had told you probably hundreds of times over the past week that it was okay for you to go, but I didn't really mean it. Now, I could see that you were nearly gone. I could not physically or emotionally handle another day of that level of pain. I had not slept in days, afraid to miss your last moment. I had heard that often people wait until you leave the room to let go, and I didn't want that to happen. I wanted to be there. They say hearing is the last sense to go, so with bloodshot eyes and all the courage I could muster I leaned in close and whispered, "Baby, I love you. I'm going to be okay. You can go now." That time, I really meant it, and you knew. Shortly thereafter, your breathing eased and slowed. I clutched your hand, tears streaming down my face. At 4:26 AM, you exhaled for the last time.
There are some things I want to say to you on this anniversary. I want you to know that you are loved as much as you were that day, and missed so much it still frequently causes my breath to catch in my throat. When we met, you used to say it was like God faced us toward each other and said “Okay Patrick, okay Lisa: here. This is what you’ve been looking for.” I knew you were it for me right from the start, in that cheesy way they say happens only in the movies. You were my movie love. We shared so much passion and so much struggle. I often wonder today whether it would have been sustainable because it was THAT intense. You were the kindest, funniest, most gigantic-hearted person I ever met, and you still hold that title. You made me want to be a mom, because you were the very best dad I had ever seen and I knew you’d be the same to our kids. We didn’t get the chance, and that still hurts.
You know how hard I have struggled to carry on without you. The memories that I have shared here today haunted me and played on a loop for years. I cannot tell you how often I wanted to die so we could be together again. I remember begging God to take me out so I did not have to live on with the weight of your absence. But through hard work, a lot of therapy, every spiritual remedy you can imagine and so much soul searching, I have lived on. It has rarely been graceful or dignified, but I have lived on.
I have learned that I’ll always have that ache in my heart when I think of you, and when I think of us and the life we might have had together. I have accepted that the pain is still so gut wrenching because it’s commensurate to the size of the love. And that was huge. I also know you are my #1 cheerleader and that you are so proud of the steps I have taken forward. I can feel you laughing with me on every bad or pointless date I've been on. I know it pains you when I’m treated with less respect than I deserve. I know you want me to find the companionship I have started to hope for again. I feel you along side of me as I try to forge ahead, often stumbling, frequently in pain, but continuing to move through it even when it’s excruciating. I feel you, even though I can’t see you anymore. Oh, how I wish I could.
You will always be my person, no matter where you are.
7/11/2019 07:35:53 am
Beautiful ... thank you for keeping his memory sacred, Lisa. Through that nightmare I experienced love and friendship from both of you that has changed me forever. I miss him and I love you.
7/11/2019 09:32:04 am
I love you both. I always will.
7/11/2019 10:22:11 am
Dearest Lisa, you are so special to me and countless others!
7/12/2019 01:22:20 pm
Thank you Lisa, it is beautiful read your words and to have witnessed the incredible love you shared with Patrick. I am so grateful you have been able to be so strong and courageous to share them with us. So grateful you’ve fought to become the woman you are today! You are a beautiful woman! Much love to you!
7/18/2019 09:03:30 am
Oh, thank you for sharing more of yourself and Patrick with us. I always think of Patrick as I knew him with you. All memories are of that post-NCCAA Patrick...as if the prior memories were somehow incomplete! I miss Patrick and I miss you. I am so happy that he’s still walking beside you on this “next phase of your development “ and with that great Patrick sense of humor!
12/11/2019 10:11:04 am
12/11/2019 10:16:17 am
Thank you so much for reading, Debbie. I am so sorry for what you're going through. I know a lot of folks in the brain tumor community with anaplastic astrocytoma diagnosis who are more than a decade into their experience, so I hope you won't have to worry about this for a good long while. If I can be of help or support to you, please don't hesitate to reach out at firstname.lastname@example.org. Sending you love.
12/11/2019 10:41:48 am
12/11/2019 11:07:18 am
Lisa- Reading your words brings me back to my own similar experience -I lost my mom to stage for GBM in 2008 she was 59. By her side even after I had my 3rd boy I couldn't leave her. All your words and feelings and experiences hit so close to home for me. It has changed me forever and I never knew my world could be so rocked. You are not alone- hugs Thank you for making a difference and sharing. K
2/12/2020 07:27:16 am
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Lisa O'Leary is a lawyer, cat mom, widow, sports enthusiast, truth seeker, soul searcher, meditator, and consciousness practitioner who is actively engaged in quieting down the mind to allow the song to play.