The Day Amanda Died
| The O’Brien women: Sarah, Marlene and Amanda |
Behind every strong person is a story that gave them no choice.
September 24th, 2021
“She looks beautiful” my niece said. I glanced at my unconscious sister whose almost black hair contrasted starkly with her pale skin. Amanda was lying in a bed, completely covered with blankets with the one exception of her left arm. Her hand was laying on her chest, her fingers circled neatly into a loose fist. I watched her hand slowly move up with every inhale and slowly move down with every exhale. In the hours before her final breath, death had crept in and transformed my once gorgeous and incredibly vivacious sister into someone ghastly looking and unrecognizable to me.
There is nothing beautiful about death, I thought to myself.
About two weeks earlier
On the morning of Thursday, September 9th, I got a phone call from the hospital to give me an update on my sister. I didn’t know it at the time, but it would end up being “THE phone call.” We will all have what is referred to as “THE phone call” in our lives. If you haven’t had one yet, just wait. It is the one phone call out of the thousands of phone calls that you will never forget. Like most people, I wasn’t not expecting it.
By the time I got “THE phone call” Amanda had been in hospital for many weeks. She was there to get “stabilized” prior to being to being admitted to a long term memory care facility. Previously, for the past three and half years, she had been at our family home residing with our mother and a live-in care giver. After our mother died, it was even more imperative to me to keep Amanda home around familiar people and things. To have her as close to me as possible. Then one day, Amanda had an episode. And then another. And then another. As much as I wanted to continue to keep her home, Amanda’s brain disease had progressed to the point where her care giver and I simply could not take care of her anymore. She needed to be in a skilled nursing facility with the right equipment and medication, and with skilled professionals who knew how to give her the best quality of care. But really, hospital was just purgatory. It was the place between home and a nursing facility, in my opinion, somewhere between Heaven and Hell.
When I came to the conclusion that Amanda’s needs would best be served in a nursing facility, she needed to first have a “stop over” in hospital to get evaluated for the type of nursing facility that would be best suited for her. The hospital assigned a team to her, they developed a plan, they executed the plan, and miraculously, she stabilized. She passed the evaluation by the nursing home facility and she was accepted. It was both a sad and happy day because I knew that I wouldn’t be able to see her as often, and at the same time, she looked so much better than she had. The hospital had worked wonders for her.
We were only a day or two away from moving her out of the hospital and into the nursing facility but fate intervened in the way of the phone call I am referring to. The doctor and I talked for a few minutes about Amanda’s past and present. He was setting the stage, preparing me for what was about to come, her future. After a brief pause, the doctor said, “I’m relived to see that she is DNI and DNR” and my heart sank. He went on to say that she developed a fever and had been transferred to the medical unit. Then he told me that they discovered clots in her legs. Then he told me that they discovered clots in her lungs. Then he told me that she had no quality of life and that due to her progressive brain disease, there was no possibility for improvement. Then he told me…no, he asked me if I wanted hospice. I said “Yes.” It was the second time I said “Yes” to beginning hospice for a family member in six months. First my mother and now my sister. I should probably introduce myself to you. It is I, the Grim Reaper.
The moment we hung up, I messaged my niece, Amanda’s daughter: Devon, we need to talk live about your Mom. She is not doing well. Please call me.
Between September 9th and September 18th a lot of stuff went down. I kept my niece informed, provided her with all the doctor’s contact information, and basically cleared the path for her to be an active participant in the final weeks of her mother’s life. Sudden death has its benefits, planning a death makes room for plotting. I got completely blindsided by my niece who sent me the message below.
September 18th, 2021
WhatsApp Message from my niece:
Let me start off by thanking you for everything that you’ve done. Words will never truly be able to articulate the gift you’ve given me in the last few years. Your selflessness allowed me to focus on birthing my son and becoming a mother…and for that I’ll be truly forever grateful. The endless hours of paperwork, insurance phone calls, sleepless nights, grocery runs, insurmountable stress, doctors appointments, tears, money, tension in your family/marriage, all coupled with grief and complex heartache that has come with Mom and Grandma’s conditions.
I know you’ll never get that time back with your family, yourself or your businesses. It’ll never be tallied up in a traditional sense, but I have no doubt that Grandma felt it, Mom felt it. This world is composed on energies beyond our understanding, and. you acts of devotion and love radiated through that house and healed parts of everyone inside…even if it couldn’t cure what illnesses were physically manifesting in their bodies.
The weeks ahead of us will likely be an emotional rollercoaster, so before jumping on a plane, I’ll attempt put my thoughts in order as I drive to the airport. Please bear with me.
Other than the birth of my son this is the most significant moment in my life. Even in the most painful moments of our relationship our lives were woven together with the deepest love I’ve ever experienced. And so much more. I’m really looking forward to this time alone with her. However long we may have. This is more than her death to me, it is a sacred initiation and call to ceremony. A time for us to be mother and daughter for the last time in this life.
I finally got up the strength to look through the last two folders of old photos and mementos that you’d given me before Magi was born. Found a few more diaries of hers, photos, but also an envelope with a will that she must have written shortly after Lee died.
In it she says that she leaves all her possessions to me and that I’d handle her affairs after she passed. She wanted to be cremated. She wanted me to keep her ashes, but spread some in the canyons where Lee’s ashes were scattered. Afterwards, have friends sit down to a simple but fresh meal and share stories of her life. I intend to honor all of this. Even so I’d truly love to hear your suggestions for the memorial as I take everything into consideration. I’m looking forward to reconnecting with Peter, Jen, Clay, Phoebe and others who have reached out to me this week. This community knew her better than anyone the last 30 years of her life and should share in this potency of this transient time. As her daughter and only child it feels exceptionally significant and healing for me to be able to take the wheel for these final weeks and throughout her memorial.
But as of right now, having this time alone with her is what truly matters. I’ll take her ashes back to Costa Rica with me and can bring some to New Mexico for the memorial when the time comes.
I’ll reach out as soon as we’re settled at the cottage.
Excuse me….what is going on here? Is it possible that I am reading this correctly? Just like that, after three and a half years of daily caring for my sister, I was dismissed by her daughter who visited her mother only a handful of times in three years despite me urging her to come visit. Despite me reminding her that as every day passed, Amanda was going to remember less. Despite me reminding her that we only had a small window of time to have Amanda present. I opened the door and let her in to Amanda’s final days but the custodial laws in Connecticut were on her side, and my niece leveraged them to her advantage. I was also the one who reconnected her with Amanda’s friends (who she mentions in the message above) because not one of them had my niece’s contact information. My years of unselfishness and inclusivity was met with one of the most selfish act I have ever witnessed.
I went sobbing to my husband, who has been my rock throughout this entire time, and he told me something that helped ease the pain. In an effort to console me, my husband tried to convince me that my niece was doing me a favor. At least this way, I wouldn’t have to watch my sister die. I clung to that and tried to push away the feelings of being used and betrayed.
With my role severely diminished, I only got text updates from there on. I knew that my niece and her girlfriend (she asked her to come for emotional support) would arrive in Connecticut on Sunday, and that Amanda would be transported via ambulance on Monday to an Air BnB in a neighboring town. Hospice would commence for Amanda on Monday, September 20th at the Air BnB.
Sunday, September 19th
Love is not what you say. Love is what you do.
Today would be the last time I would be allowed to see my sister before her daughter swooped into town to take over, so I went to the hospital to say my final goodbye. I’ve never done this before. I have never gotten in my car to drive anywhere to say goodbye to someone that I would never see again. I was trembling all over when I arrived to her room. I did the first and only thing that I knew needed to be done for her and for me. I crawled into her hospital bed and wrapped my arms around her. I told her again and again how special she is, that she has left an indelible imprint on the lives of so many people and I retold her about her life and whispered to her our sister secrets that only she and I will ever know. Above all, I told her that she was loved unconditionally just like she loved everyone in her life. Amanda’s heart was so big. The biggest.
Friday, September 24th, 2021
It’s a good day to die.
I knew Amanda was going to die today. I knew because when I woke up, the sun was shining and there was nothing but beautiful blue skies for miles. I also knew because this was her fifth day in hospice. She started hospice on a Monday, just like my Mom. She will die on a Friday, just like my Mom. Our Mom.
I was working at my floral studio, preparing for a large wedding the next day, my amazing team by my side. We took a break for lunch and sat outside in the warm sunshine. They knew that Amanda was in hospice and I told them that I was getting daily updates from the hospice organization and that I was struggling with how to balance my emotions. I was filled with anticipation of getting the dreaded phone call today and the work that lay ahead for the wedding. I told them that I expected that Amanda was going to die today and that I didn’t want them to think that I was being callous if I continued to work. At the same time, I felt that time should stand still when Amanda died and that I didn’t think that it would be right for me to carry on “business as usual.” They told me that if she died today, that I should leave and maybe go to the beach and take some time – they would handle the wedding flowers. We finished lunch and went back inside to the floral studio and continued to work.
At 3:40pm, I heard my phone buzz with a text message. It was from my niece and it said “She probably just has a few more hours. According to the nurse. You’re welcome to come here if you like.”
Oh no, don’t do this to me. How can you shut me out and make it crystal clear that I was not welcome to be there when my sister dies and then abruptly change your mind? I’ve already said an agonizing goodbye. I do not want to do this again. My heart was racing and I turned to my team, one of them, a dear friend who was completely up to speed with everything that had happened over the past years and weeks and days. I read the text message and asked her what I should do. My friend said “Oh Babe, you have to go.” I said “I’m scared.”
I made a split-second decision before I lost my nerve and texted my niece and said “Okay, I’m on my way now.” I knew I wouldn’t be able to back out of that commitment once the text was sent. I also knew that Devon’s friend had left and that she was alone with her dying mother and needed someone/anyone to be there with her. I was simmering with anger at being pushed and pulled over an incredibly sacred occasion.
I called my brother when I got into my car, he needed to know that our sister wasn’t going to be with us much longer. I told him that our niece had changed her mind and invited me to be with Amanda when she died. With a promise to keep in touch, I drove the few miles to the Air BnB located in a private beachside community. I arrived at the address that my niece had texted me. I punched in the code and the gate opened, it seemed to take forever for it to slide open wide enough for my car to pass through. I found the house, a charming, single story beach cottage painted in pale blue. The numbers 116 next to the door. Amanda was born on a 16.
Without knocking, I opened the door and found myself in a long narrow hallway. I called out to Devon and said “I’m here, it’s Sarah.” I heard a faint “I’m over here” or maybe she said “I’m back here.” My heart was beating so fast. Nothing in the entire world could have prepared me for what I saw next. To this day, I will never forget the vision that lay before me. To her credit, my sister’s daughter had designed and created the most beautiful and intimate environment for Amanda to pass away in. Imagine if you will, a sunken bedroom with a bed facing a large open window and through the window is the ocean, the sunlight dancing in the ripples of the waves. On the bed, with a view of the ocean is Amanda. She is under the white sheets with the exception of her left arm, her black hair spun around the pillow like a fan. A teal blue blanket, something that you would find in her beloved New Mexico, covering her lower half. She is not conscious and the only sign of life is the slow rhythmic movement of her left hand which is laying over her heart. Her breathing is so quiet. On the end of the bed, with her back to the ocean, Devon is watching over her mother. We make eye contact and Devon cries, “I’m sorry! I didn’t mean to hurt you! I don’t know what I should be doing. I don’t know how to do this. I’m too young, I shouldn’t be losing my mother!” I nodded. Words were unnecessary.
A chair had been placed next to the bed and I lowered myself into it. It took me a minute to collect myself. Then I looked at Amanda, her skin was alabaster. I took her hand in mine and held it. We sat for a long time watching Amanda without speaking.
I’m not sure how long I was sitting there before I felt like it was okay to look around. I was so focused on my sister that I didn’t see it at first. A living shrine had been made with a series of small tables nestled together with vases of flowers, incense, crystals and seashells. On top of all the tables are photographs of Amanda, her face illuminated by the countless candles that have been dotted around. A smudge stick had been lit, its tip black with soot. The level of thoughtfulness that was put into creating this shrine was heart warming, l remain in awe of what she did to honor her mother.
| Amanda’s view from her bed |
Devon, you are your mother’s daughter, filled with unconditional love for her as she was for you. Your mother raised you to be loving and spiritual and creative and this living shrine is the most amazing tribute that I can imagine. It is exactly what Amanda would have wanted. A view of the ocean, the smell of the salt air, the sound of the waves and her daughter and sister next to her when she dies.
When I die, I want someone to care enough about me to make something as beautiful as this for me to pass away in.
Eyes Open. Mind Open. Heart Open.
In an instant, all was forgiven. Amanda was the only thing that mattered, we both wanted to cherish our time with her in her final hours on Earth. It was a solemn time. We made small talk and Devon would occasionally ask me questions about her mom. We were mostly watching Amanda and waiting. From my chair, I was afforded the same view of the ocean as my sister. Around 6:00pm, it started getting dark and the sunset was so pretty. There was a door that led from the bedroom to the beach, and I went outside and took a photo of the sunset. When I came back inside, Devon said, “Just wait, they get better.” So I waited. I went outside again at 6:40pm and took in the view of the new sunset, she was right, with dusk falling, the darkness in the sky only made the cotton candy sunset pop even more.
I turned to go back inside and something made me glance to my left. I immediately screamed out to Devon. “Devon, there is a rainbow!” Devon came flying out of the house and stood with me. We jumped up and down, we held each other and cried our bittersweet tears, I thanked the Universe for sending the rainbow bridge to get Amanda. I pulled out my iPhone and took a video of the rainbow just in time. Her rainbow bridge disappeared as quickly as it appeared.
Many minutes ago when you started reading this blog post, you read that the day Amanda died it was a sunny, cloudless day. As a matter of fact, there was no meteorological reason for a rainbow to have appeared, it hadn’t rained a single drop that day. I know in my heart that the rainbow bridge came to usher Amanda to her next life. I believe it is important to mention that the official time of sunset was 6:46pm. Amanda’s spirit left this Earth on a rainbow bridge at sunset. Amanda, you deserved a spectacular exit.
It wasn’t until later that evening when her body finally came to rest with one silent exhale.
Amanda’s Last Breath
I am so apprehensive about this part. It is so raw. The emotions don’t make sense, they are complicated and conflicted and all I know is that I did something that I am not comfortable with.
After the rainbow bridge, Devon and I went inside and resumed our stations. She on the bed and me on the chair. We’d get up occasionally to stretch our legs. At one point, the hospice nurse came to visit. She took Amanda’s pulse and said that she wouldn’t last through the night. The nurse stayed with us for a while and left Devon with instructions about what to do when Amanda died.
While we sat with her, we played her favorite music. In homage to her Jamaican roots, we listened to Bob Marley. It inspired me to make a quick trip to the closest liquor store where I bought a six pack of Red Stripe beer. We hung out, listened to music, drank beer and I shared stories. Around 10:30pm, there was a change in Amanda. A slight restlessness that hadn’t been there before. Devon noticed it too and climbed into bed next to her. She had stopped breathing. Devon put her ear against her mother’s chest and said “She’s not breathing. She’s dead!” And then Devon lay on her mother and sobbed. She kept saying “Oh mommy, oh mommy!” I sat frozen in the chair. I wasn’t ready.
Then all of a sudden, Devon sat up and we watched as Amanda started breathing again. Devon looked at me and said “I swear she wasn’t breathing.” It felt surreal. One moment she is gone and the other moment she is back. Devon got up and walked to the kitchen. She started doing some dishes and she said, “I don’t know how much more I can take of this.” She’d been sitting with her Mom, administering her care for five days. It was emotionally and physically exhausting.
A little after 11:00pm we were both sitting in chairs next to Amanda. Devon had grabbed her laptop and she was reading aloud Women Who Run With The Wolves by Clarissa Pinkola Estés. While I listened, I kept my gaze on Mandy. I watched her hand slowly raise with each inhale and slowly lower with each exhale. I noticed that the time between her inhales and exhales was getting longer. Every few minutes, Devon would glance up from reading and look at her mom, and then she went back to reading the book. I watched as Amanda inhaled and exhaled and every time she exhaled, I waited to see if it was the last. When someone is as comfortable and peaceful as Amanda was, it is impossible to predict when her last breath will be. But it finally happened. I noticed that she wasn’t breathing and I didn’t say a word. I glanced at the clock and waited. I waited for Amanda to go, to really die this time. This is the part that I don’t feel comfortable about. I didn’t tell Devon. I am absolutely convinced that Amanda died 30 minutes earlier at 10:30pm and when Devon started sobbing, Amanda was on the threshold of death and came back to life when she heard Devon crying. A mother will do anything to hush her child’s tears.
This time, I needed to help my sister leave in peace. So I waited. I waited for several minutes and when I was convinced that my sweet sister had left for real, I very softly said “Devon.”
The Part That Keeps Haunting Me
In those last seconds of her life I wanted to keep her and let her go. I willed myself to sit motionlessly in the chair when what I really wanted to do was to go to her and beg her to stay. In the weeks after she died, I have wondered what would have happened if I had a change of heart and stopped hospice. I have wondered if it would have even been possible to bring her back to a living state. Even if she has lost all her executive functioning skills, and lacked the ability to comprehend, much less communicate, at least she would still be alive and with us. I could have visited her, and been with her. Held her. I began to appreciate, in a very real way, why people don’t pull the plug.
There are people like me who know in my heart of hearts that Amanda had no quality of life and that she would not want to continue to live. There are people like me who know in my heart of hearts that regardless of the quality of her life, I wanted Amanda to continue to live.
My Parting Words
I started writing this blog post after Amanda died. She has been dead for three months and in that time, I have come back to this post, in draft version, many times. I continue to edit it and refine it until it expresses exactly what I want it to. And also in that time, I have communed with family and friends about Amanda. I’ve struggled mightily with her death. The grief over losing my beloved sister has been overwhelming. The guilt I feel over agreeing to hospice has been suffocating. I’ve asked for guidance with grief counseling, been given podcast suggestions. But, on Wednesday night, just last night, I met a friend for dinner and she told me something that has helped me so much…are you reading this Kirstin? She picked a private table, we ordered Nachos for two and over the strongest, spiciest and most delicious Margaritas, she told me that I am not the Grim Reaper.
She told me that I am the Angel of Death. “Who is that?” I asked her. She went on to explain that the Angel of Death is a spiritual figure, and that its role is to help separate people’s souls from their bodies. I sat there and let her words wash over me. And I felt myself open to the idea. You can tell me a thousand times that my decisions have been for the best, but until you are in my shoes, you don’t know how absolutely dreadful it is to sign the death sentences of the two most prominent and vibrant female roles models in my life. And if you don’t know, I was raised by a bad ass feminist. There was nothing that my mother couldn’t do, wouldn’t do or thought she shouldn’t do. Amanda emulated the same life philosophy. And here is where my brilliant friend, who has heard me talk about my mother and sister, said the perfect thing. She said “You are the Angel of Death because you honored their vitality of life so much that you knew that they would not want to continue to languish in their weakness. What you did was the most loving, compassionate and humane act of service to them.” I am going to hang on to those words, one day soon I hope to get there.
I don’t want to think about my mother and sister for a while. I desperately want to shove all this pain down and get a break from the tears. I’m so tired of crying. I want it to be over. “No you don’t” said my Angel of Death friend. She said “You hang on to that grief, because one day it will be gone and you will regret it.” It took me a while to realize that what she meant is that when the grief subsides, so do the memories. It was a profound thing to say. She’s right. In the end, all I want is to know that my sister left a mark on people’s lives, that in a large or even in a very small way, she made an impact. I want to know that her life had meaning because there is literally nothing left now but her imprint on the lives of the people she loved.
I am out of words for now, but there is so much more to say.
| Me, my sister Amanda (holding her daughter, Devon) and our Mom |