Our friend mentioned how his aunt was in the last stages of Alzheimer’s, and the impact on the rest of the family. She was slowly and painfully forgetting her children, grandchildren, and the 49 years she had spent with the man who loved her. He said his uncle was agony every time he went to visit her, and he felt shame. She was not the woman he knew and loved and it was horrific to see the woman she was painfully becoming. He was not in love with her. She was an obligation and that was unbearable for him. The acceptance of who she had become and the loss of everything they had once been made him feel anger. She had “left him”. He had to force himself to go on his daily visits, give the obligatory kiss on the cheek, hold her hand, and remind her of his name. He left disgusted. The shame of all of it is ever present. The silence that shame keeps over him doesn’t allow him to speak of his feelings, except to our friend. It is a becoming a part of his slow death.
I shared the moment with our friend around your death that brought so much shame, but it was also a pivotal part of the process of acceptance.
It was the fourth time in two months that I called 911. I asked them to send an ambulance, without the siren, (my futile attempt to hide from the neighbors what was really going on) for transportation to the Emergency Room. I cannot even remember what was happening to your body, but it was something I could not manage by myself. I do remember it was the last time you were in our bedroom. You could not walk up the stairs, could not share our sacred bed, could not “work” in your office from that point forward. And…I still did not believe you were dying. I thought it was all just the accumulation of chemo, radiation, immunotherapy, drugs, etc. taking its course.
It took four firefighters to pick you up off the chair, painfully place your war torn body on a gurney to get down the 8 stairs to the landing, and 11 more to the front door. You argued with them a bit about the way they were moving you. The firefighters gracefully, patiently listened because they could see you were dying. They had seen it so many times before. I had not. I was not ready to release the hope and accept the reality that was right smack in front of me.
I sat outside on the stairs as they loaded you into the back of the ambulance. You paused before they rolled you back and said “God, you are so beautiful”. That was the first time in months you acknowledged something about me you would usually say multi times on daily basis. I had become used to being the caregiver, almost like being a new mom, I had forgotten what it was like to “look” in any way. It made me miss the way we moved together as a couple, how much we adored each other. It hurt deep inside me. Two seconds to feel sorry for us and I pushed it all to the background as I flew into my routine of gathering important items and clothes to bring to the hospital.
I drove to the ER and stayed until the doctor came to give his report. “Well, the tumors are in the lungs and around the lungs which is constricting your ability to breathe. We will do another scan to see what else is going on. Otherwise it all looks the same.” Okay. I went home, called you that night and gave a text before bed. This had become our new normal routine.
I was able to get a semi-good night sleep because you were in the hospital. I wasn’t glued to the baby monitor, listening for any signs of distress. It felt shamefully liberating. I woke up, showered and got dressed to go back to spend my day in the little green room with the big white board of who was attending to my husband. For the next 8-10 hours, I would join your “team” in my position as the note taker of when you ate, slept, went to the bathroom, had wound care, a sponge bath, etc. Our day together. We didn’t really have conversation because of your pain and the medications that made you drowsy. But, I am your wife and I love you. That is when it hit me. I did not want to go back to the hospital. I couldn’t. I didn’t want to feel the loss of us anymore. The loss of my life. I started to shake uncontrollably. It was like something was slithering up from the bottom of my being and it made me want to fall to my knees. I was not in love with YOU anymore. I almost threw up. I was not in love with you anymore. Disbelief. This is the man I left my former life for. This is the man who made me feel alive, beloved, adored. This is the man who told me when I felt insecure that “I will always make you feel so loved, adored, and filled up, that there is no room for insecurity about you or us.” This is not the man I have been living with the last few months. This man was not the same as even the last month or week. I loved you with all my soul, would care for you and protect the very best everyday for the rest of your life. I was committed to doing whatever it takes to love and care for you. I loved you more than I ever thought I could love anyone, even more so every day you were dying. But, I was not in love. I didn’t want to face you with this realization because I feared you would see it right away. We knew each other so intimately and without words. We could read each other at a glance. My love was so deep for you, but it had changed forever and I could not even conceive of how it would return. The shame, the guilt of that moment was so immense I could not physically move. My sister-in-law called while I was in the moment. I had to hide my revelation from her because I thought she would think I had failed as a wife. I stood shaking and crying while she encouraged me to get to the hospital. Now. She shocked me into movement with her desperation to bring back his advocate, care giver, wife back into the game.
When I arrived at the hospital, I felt the most anxiety I had ever felt throughout the ordeal. I walked into the room with this new knowledge deep inside of me, wondering if everyone I passed to his room could read me. When I looked at you, eating some kind of jello thing you would never entertained eating a year and half ago, you simply said “Hi Honey”. That’s all. It was normal. You could not read me anymore. I knew you loved me more than anything, including your own life, but you were in the process of reverting to childhood and dying. In the past, when you would walk through the door after work in your beautifully tailored shirt and say “Hi Honey”, it was met with a passionate kiss and hug. Every. Single. Day. In that moment, in the hospital, I flashed on all of those moments, felt grateful to have experienced such love, and desperately sad that now it was said almost like a child to his mother. Once again, I pushed all of that to the background of my mind, gave you a kiss on the cheek, and returned with a “Hi Honey.”
As I shared that with our friend, we both sat in silence as I gathered myself away from wanting to sob. The shame is what is important to let go because after the death, you are the one left holding it. The other person is dead. We all do or think things in those moments that might be judged by others, but who the fuck cares. It is left with us, on our journey, through this life, and there is nothing to judge. I asked him to share my story with his uncle, if it felt appropriate, in hopes to alleviate even an ounce of his guilt. I realized how important it is to reach out to others walking this path through all the feelings about death. Because it is all hard enough.
I trained in voice for twelve years from 6 years old. Much to my parents chagrin, I did not go into classical vocals, I sang in a folk grunge band for for a few years in the 1990s. I used to smoke cigarettes until I got pulmonary thrombosis (blood clot in my lung) at 24, and had to be in the hospital for 10 days. It was one of the best things that ever happened to me. I have run 53 Half Marathons, 2 Marathons including Boston (through the Liver Foundation). I stopped running at 49 because my relationship was over with running and I started an affair with cycling. I love, no, I am obsessed with my furbaby, Ziggy Stardust. The greatest love of my life is my daughter. I am a Dave Matthews devotee and try to catch as many gigs around the states as possible. And finally…I love the Broulet Brothers, Trixie and Katya, and all things Tim Burton.
