I'm not sure where to begin this story. Perhaps on April 6, when my husband took his last breath at 10:30 am that morning. When I think of that day, I can still see him very clearly. He is lying on the hospital bed that had been parked in our bedroom for months. I’ve just washed his hair; the home hospice technician holds his head up as I lather his hair and rinse out the suds one last time. I watch as the basin fills with soapy water, and I get a whiff of his shampoo. A couple of months earlier, he had asked me to shave his beard after he died. After reading many end-of-life books and articles I knew I wanted to do as much for him afterward as I possibly could. We'd talked about it in-depth, but when I say we'd talked about it, it was more me talking him listening. Me, reciting text from Kate Braestrup and Caitlin Doughty about caring for our loved ones after death in our own homes. This time, he talked and I listened. He'd been listening, I guess he'd taken his time to consider his options. He took his time that morning and told me what he wanted and with tears streaming down my face I committed every detail to memory. I rubbed the shaving cream on his face and begin to shave him. First, his left side then the right. I give him a once over, and we start his bath.
I’m overwhelmed with emotion but the room is quite tranquil. We are all very quiet for his benefit. Honoring him, being present in the moment, providing all the love we can give. Next, I slip what was once his favorite green hiking shirt over his head, "Patagonia," it reads across the chest. We pull on his black pajama pants and lay him back onto the bed as gently as possible. Before I call the funeral home to come and pick up his body, I call the kids into the room to spend time with what remains of their father. He is finally gone after we’ve watched him suffer from glioblastoma, a rare brain cancer that has ravaged his once sharp mind and athletic body. Now, we witness him thin and frail; his cheeks are sunken in, his mouth is slightly open just enough to see his teeth. One of his eyes is somewhat open; the other is closed tight as if he is getting one last peek at what he is leaving behind. Forty-five minutes ago, he took his last breath. He tried to linger for us, our little family, I could tell. The hospice nurse had told me he would "transition" by the end of the day, five days ago. The night before he died, I held his hand, and I lay next to him, his body already cold, as he continued to struggle to breathe. His feet were ice-cold, l stuck my feet to his out of habit. Thinking of the winter nights, he came to bed late and warmed his feet against mine. I realized l could never warm them again. I laid my head on his shoulder and my hand over his heart and counted each beat. I whispered close to his ear and told him that he could go. I told him this is not the end of his life, but the beginning. I tell him it is the end of pain, suffering, disappoint, guilt, and regret here on earth, but the beginning of love, peace, happiness, hope, and a pain-free existence in heaven. Choose that! Then I told him I loved him. I must have told him thousands of times that I loved him since he had entered home hospice three months prior to that night. He had frequent seizures and stopped breathing during them so I never knew what day or hour or minute would be his last. I wanted the last thing he heard me say to him was that I loved him. I think it aggravated him. I may have overdone it. But, can you tell someone you love them too much? The children entered the room. They are young, only six and nine, too young to have just lost their father to cancer.
I am young, 35, and too young to have just lost my husband. Over the last several months, I’ve given them several analogies to explain his impending death. I explained that their dad’s soul would leave his body and my idea of how this would happen. I've told them that only his shell or body that would remain here on earth with us. "Our body is just a house for the soul," I told them. "Once the soul vacates the body, it is empty of your dad," I explained. "Like when dad taught you how to cook eggs, and after you cracked the egg the shell was left in your hand?" They nodded. What made your dad your dad isn’t in there anymore," I tell them. They approach the bed very gingerly we’ve talked about this day for eleven months. Now, it’s finally here. They look at me and ask if they can touch him. “Of course,” I tell them. “Hug him, kiss him; this is your time to be here with him for the last time." I explain, "next time you see him, he will be in the casket we talked about”. They hug him and kiss him. The little one runs from the room and returns minutes later with a bouquet of blooms she has picked from his flower garden. She surrounds his head in a bright halo of flowers, red, and white, and yellow. When the kids leave the room, I nod to the hospice technician, “Yes, go ahead and notify the funeral director, it’s time.” His parents have been in. His brother is on the way and will arrive before the funeral home comes to take his body away. I am not ready, but I know they have to take him. In the last few days before he became unresponsive, he'd told me he had changed his mind about not being embalmed. He wanted his friends who would have to travel to have the option for viewing. While waiting for them to arrive, I felt very possessive. He was mine, and I was his. I want to keep him forever just as I thought we would be together forever. As we stood before one another and God and recited our wedding vows. I was sure we would grow old together. But that was not part of our journey. That day in April is when our journey together ended. It was the "until death, do we part" line of our vows we recited out of duty finally being realized, although at the time at the alter we really didn't allow it to register.
The next day, I went to the funeral home with his black suit, and his hiking boots. The staff gathered around and watched me curiously as I dress his body and cared for him in the confines of the cold mortuary preparation room. They said they had never seen a family member come in and do this for their loved one. I did not allow them to make him up with makeup with rosy cheeks and pink lips. They would not make it appear he still had life in his veins. We'd be able to recognize him, and we would not pretend that he had not moved on far from us. From the moment we received the terminal diagnosis, I promised to be by his side through it all, and I kept my promise. Now time continues to move on without him in our lives, albeit, for me, silently and in a series of slow-motion events. I notice that his scent still permeates every thread woven in and out of his shirts. Every article that I haven't washed smells like him. I wear his shirts, sometimes. I wear them and think of them intertwined in and around the shape of his body. I extract every detail from the fabric. I think of it caring for him over the years. I breathe in deeply, inhaling its history, exhaling my sorrow. This fabric that absorbed his sweat and shielded his skin from the sun, collected his tears, sealed in his oils, and odors. One of them is threadbare because he wore it often, he wore it down, he wore it out. He loved it, and I imagine, if it could, it would have loved him too. I miss my husband. I hate being a widow. I hate sleeping alone. I am in pain. I am envious of those who have love in their life. I'm lonely. No, it's something more than loneliness, it's isolation. I feel forgotten. In the beginning, I thought, if only I could get through the day. At night it was quiet, the kids were in bed, the dogs were bedded down, and I could breathe. Let out a sigh of relief. I'd made it through another day. Now, I think, if only I could get through the night. I hate sleeping alone knowing the other side is cold and empty. I hate the thoughts that run through my mind before I finally drift off to sleep. Sometimes, I think of times when we were mad at each other, and our feet passed over each other in bed, and we shared that moment of closeness before we remembered our anger and snatched our feet away. I miss my husband. I miss everything about him. I miss those moments when our bodies just needed each other even when in our minds we pouted. I miss our bodies coming together, finding its way back to each other, no matter what. The truth is the only other person who knew pretty much every single thing about me died. The only other person I knew pretty much everything about is dead. I don't know how to process that information. Every time I think I've made any progress, I take a giant leap backward. One day, I will be able to pack up my thoughts and clear out a shelf in my mind and leave this big box filed there. One day, I will have to. I am dreading that day. Death is complicated, it's difficult to process, but the one thing we must work towards is allowing ourselves to be present, and feel all the complex emotions it gives us, and sit with them for however long we have to.
This is a story of grief incarnate and in process. Toggling among cold hard facts of life and the magical thinking that is required to bridge the gap between the former reality and this present one. How intolerable grief is, even while we the readers get to see Karen “tolerating” her grief so beautifully.
“They said they had never seen a family member come in and do this for their loved one.” In general, it’s a good idea to participate in the whole process, before death while navigating illness and healthcare, and after the death - preparing the body and designing the funeral, as ways of extending that relationship. For patient and caregiver alike, dying is something that happens around us and to us as well. Living the experience helps someone own it and create from it, and therefore to know death more and fear it less. These memories can serve to lessen regret over time.
She describes their relationship as being over now, just as she tells us how it continues: in their children, his t-shirts, the absence in her bed. With death and grief, the answer to most emotionally-laden questions is “all of the above.” This is one of death’s big lessons: make space for everything, including what appear to be contradictions.
It’s worth noting too the sense of unfairness in the mix here. Most people think of death as something that happens to “old” people, but the truth is that it happens to people of all ages. It’s important to realize this fact so that we learn to grieve all along the arc of life. Typically, the social constructs and verbal cues we perpetuate with each other can make it harder on younger patients and their families. As though it’s unnatural to die relatively young, and therefore all the more taboo to acknowledge. I’ve met many younger widows and widowers you feel only more ostracized for their pain because the public seems to “accept” death when it visits older people but reject it entirely and fiercely for the young; fine enough, but people too easily accidentally reject the bereft in the process. At what age does death become reasonable or acceptable?
-BJ Miller, MD
Eluna supports children and families impacted by grief or addiction. Our innovative resources and programs address the critical needs of children experiencing powerful, overwhelming and often confusing emotions associated with the death of someone close to them or substance abuse in their family.