Jay here!

There’s many things from the cancer/hospice journey I have forgotten, but not this. Never this.

My dad had been on hospice for a long time at this point. They told us he might last a week, but he survived 34 days. They sent him home right before Thanksgiving, and his stubborn soul wanted to survive the holidays for us.

We’d established a new normal on hospice. I had a routine: I’d hide in my room when people came over during the day, and then I’d come out at night when there were about one or two people left in our home. I’d spend the nights on the couch next to my dad. My mom and I slept on the couch next to my dad for 34 days, because we didn’t want to miss a moment with him when we were alone.

My dad had survived to Thanksgiving and my early December birthday, and now he was trying to make it to Christmas. It was December 15th, and I’d just come out of my room for the night.

I settled in on the couch for the night, right next to my dad. We were trying to go to sleep, and the house was silent. I laid there trying to go to sleep, not knowing how to feel anymore. The only sound I heard was my dad’s breathing…

As I listened, it got shallower. It turned into a raspy wheeze. I woke my mom and told her, “Dad’s breathing weird.” We sat there and did the math to see if he was dying. Yes, that’s right: MATH to see if he was dying!

They told us he had three days after he stopped drinking water. He had stopped eating a while ago, but getting him to drink had been a struggle. We figured that he might die that night or the next.

My mom stayed up and I went to sleep, but she woke me later that night. My dad’s breathing was drastically worse. Each breath sounded painful and labored, like he was trying to breathe with crumbling bricks and tin cans in his chest instead of lungs. It was loud and dramatic. My mom told me that she had called the hospice nurse, and that this might be it.

I crept closer to my dad. I had stopped feeling anything except denial and optimism shortly after he was diagnosed. I was the one who held onto hope that things might be normal one day. When my dad said he was going home on hospice, I didn’t want him to give up, because I tried to have faith things could get better. But deep down, I knew it was all leading to this—his death.

Now I was here, watching the empty shell of my father struggle to breathe. This was it. The last of my emotions dissipated along with the oxygen in his lungs; all the hope, faith, optimism and belief I cling onto for dear life was leaving me with every breath my dad took.

The sounds of the house were as empty as my soul. All we could hear was that horrible labored gasp for breath, growing louder with each inhale and chipping away at me with every exhale.

Inhale

Exhale

My dad mustered up what little strength he had left, and he softly grabbed my hand. He gave a few more breaths, in and out. The loudest inhale of the night came, sounding as if there was gravel rustling within his chest.

Inhale

Exhale

Inhale…

Exhale…

INHALE…

Then it stopped. The breathing just… stopped.

That horrible, undoubtedly painful breath froze like someone had hit the pause button. There was no exhale.

We waited. For what, I don’t know. We knew he was dying. This was inevitable. And yet…

I listened. The previous sounds of pain had vanished, leaving only death in the air. The heavy silence of death surrounded us, interrupted only by the brash ticking of a clock, announcing each second since my dad’s passing. After all, time stopped for no one—not even death. My mom and I looked at each other, wide-eyed and frozen. Was that really it?

His death was dramatic in its own right because of that breathing. That breath will haunt me for the rest of my life. Yet, in the moment, I was waiting for more. There had to be more. A breath, a sound… Something. Was that really it?

The horrors of the entire cancer journey was the thing of nightmares, but that breath was haunting. I’ve managed to forget many things, but I’ll never forget the breath in that went in and never came back out.

Shell here!

When I think about or remember my loves final days, the one thing I will never forget is his final breath. For an entire year after his death, his final moments with us became night terrors for me. Even to this day, I shudder when I think about his final moments.

When my husband decided that he was tired and did not want to fight cancer anymore, he chose to come home on hospice. Hospice explained to me in great detail what was to become of our life. They explained a bed, potty chair, a walker, and oxygen tanks would enter our home. We would have nurses come in and help me care for him. There would be a pharmacy that would deliver his medications to our home around the clock.

What I remember most is how they said my husband would die. They were so eloquent with their words; they made it sound like a sweet loving fairytale, except we were discussing death. They said he would quietly and peacefully sleep more at the end. He would sleep so much that I would wonder if he did pass away. He would have no pain, and then after he stopped drinking fluids, he would be gone in 72 hours.

Well, none of that ever happened. Although Art decided to stop fighting cancer, he was in complete refusal to die. He came home a week before thanksgiving. The doctors that sent him home had explained to me that the cancer was everywhere, and he maybe had a couple of days to a week to live. A week to live! A WEEK!

Last time I checked, a week is seven days. Here we were on day thirty-three. Art made it through thanksgiving and our daughter’s birthday. Christmas was right around the corner, and he was trying to make it to Christmas. Let me tell you, as hard as he was trying to stay, he was equally suffering. It was like watching a nightmare unfold in front of me. He was in so much pain that the hospice nurse had to keep ordering more doses of morphine. He was on so much morphine that I think a horse would have died, but not my husband. He kept fighting to stay alive. He was awake most of the time, and never went into that sleep mode hospice mentioned.

At night, my daughter and I would set up camp in the living room so we could be close to him. I was in charge of administering his medication/narcotics through his pic line, so I wanted to always be close to him in order to monitor him and make sure he was never alone. What still bothers me to today is that I am not a registered nurse; I was his wife. Yet, I was left in charge to administer his medication. It was insane to me! I guess they figured I couldn’t kill him because he was already dying, but it was scary and quite upsetting for me. One day, I gave him too much morphine, and the hospice nurse came and she had to console me in the kitchen with my sobs. I know she thought I was over-reacting because he was dying, but for me, I didn’t want to be the one to kill him! I was devasted to my core thinking that I harmed him. I believe this was too much responsibility for hospice to dump on the spouse.

My husband rarely slept during this time. He would lay awake at night talking to people who were not there. He would see his work friends in what I call his “visions”. He would be waving his arms in the air like he was painting or hammering. He would take imaginary but real-to-him drinks of his water, hug his co-workers and chat away. I would lay awake at night and just watch him. It was like he was putting on a show, but at the same time, my heart would ache just watching him.

Every morning as the sun rose, he would insist on getting up and go to work. He was now bed-ridden with bed sores, and his skin was just hanging off his body. He was all bones and down to maybe 100 pounds. He could not stand on his own, but he sure the hell tried every single morning. It was a constant battle I would have with him during his final week here. The minute I would see him throw off the covers, I would have to fly off the couch and run to him to stop him. If I didn’t, he would land on the floor. Every time he fell, I could no longer pick him up because he was 100 pounds of dead weight.  

His final week, his best friend Dwight started to come over at sunrise to help me keep him in bed. It was a nightmare. Art was very persistent that he had to go to work every day. He didn’t realize anymore that he was home to die. How do you tell your spouse, “Sorry honey, no work for you because you are dying, remember?” His best friend would come, and we sit by his side and talk with him to keep his mind off of trying to go to work. It was awful because at times, we would have to lie to him and tell him it was a holiday, and he had to stay home and enjoy his family for the day.

The conversations we would have became disheartening for me, because I knew this was it; at times, Art was not really here anymore. Even though I cherish the final moments with him, the man lying in that bed next to me was no longer the same guy I married. Death was here, and it was slowly and painfully taking away my love one inch at a time, one moment at a time, and it was heartbreaking to watch. One morning, my husband woke up crying. As I held his hand and cried with him, he explained to me he was crying because our daughter left for college. I had to call our twelve-year-old daughter over so he could see she was here with us. She was standing next to him, holding his hand and saying, “Dad, I’m right here. I didn’t leave yet”. He would smile and say, “I love you girls”.

Sometimes, we would just go along with his visions. At this point, it no longer mattered; the man was dying. It was exhausting and heartbreaking all at the same time. He had stopped eating a few weeks back. He stopped drinking a couple days before, so we knew the end was near. I kept thinking, When? When will this nightmare be over and my husband will be free from this torture? When will he finally go to sleep and be peaceful like hospice said? That blissful, quiet, peaceful sleep that hospice mentioned NEVER happened!

Our normal routine of being in the living room, me administering drugs, our daughter hiding in her room, his best friend Dwight here to help me, and people constantly storming into our home was our life now. I had pleaded on our social media accounts for people to stop coming over, saying that we needed time alone now. I had placed signs on our front door saying no visitors at this time, and yet, people still forced their way into our home. I was tired, weak and hadn’t slept in four days. Yet, people insisting on being rude and selfish.

Why do I say selfish? Because we never again heard from these people who insisted on being here! They just wanted to see Art before he died, and they never reached out to Jay and me after his death. The only person who kept his word was Art’s best friend Dwight. He calls us once in a while and checks in on us. But during this time, people would slip in the door with the hospice nurse. People would stand at our door, banging on it. Our dogs would go crazy, barking and disrupting our quiet home.

Art could never rest because of the constant people and the constant knocking. We disconnected the doorbell by this time. Both my daughter and I were begging for all of this to STOP, but it didn’t. Even today, six years later as I type, the rudeness of people still infuriates me; the inconsideration and insistence of people satisfying their own selfish needs.

Let me tell you, if you know of someone who is dying, do not give in to your own selfish needs and run to their bedside.  Most of the time, the dying just want to be left alone. My husband didn’t want to see all these people. It was exhausting for him. Instead, text the caretaker and ask if you can drop off a meal or if you need to do something. But do not invade their home. This is their time with their loved one that they will never see again. Yes, you will probably never see that person again, but you can be helpful by giving the family their space. Send a card, drop off flowers (DO NOT KNOCK). Send a text saying you’re thinking about them and love them. Send a text and ask if you can get them anything from the store and that you will drop if off, and not disturb them. Drop off groceries, meals, toilet paper, paper towels. It may sound weird, but the care giver doesn’t have time to grocery shop or make meals.

I am grateful to my one neighbor, Ramona, because she would just drop off meals for me. She never knocked or bugged us; just a quick text, and my food was here for my daughter and me. All these people that kept invading our home never brought us food. There were days when I didn’t eat because I was too busy taking care of my dying husband. Thank goodness my father always made sure our daughter had food, until he had his massive stroke and was in a coma. Obviously, he couldn’t come over anymore after that. Towards the final weeks, eating became a luxury for me, not necessity. We won’t even discuss showers!

If you want to help the family, do the things I mentioned. Trust me, the family will love you forever. The care giver will let the dying person know what you’re doing, and I promise you the dying person, if they are awake like my husband, will be grateful for these small gestures you are doing. To this day, I am still angry and hurt that our home was three ring circus and that these people took away from the time that was meant for my daughter and I to be with our Art. It is rude, inconsiderate and selfish. Please, I beg of you, do not be that person.

As the three-ring circus continued, as Art kept having his visions and wanting to go to work, the time was getting closer. Every day, I kept wondering how much longer? We were run down and almost at a breaking point. Not that I was wishing for my husband to die, but the life we were in was hell. I promise you, no matter how much time your loved is on hospice or how much you think you know what is about to come, you don’t. You are never prepared for the final moments. They are quick and for us, quite traumatizing.

It was a Sunday evening, and the entire day was traumatizing for us. My husband kept insisting on getting out of bed. It was so bad, I had to lay next to him and practically hold him down. The nurse came by and saw how bad it was, and suggested we put in a catheter. You see, not only was my husband trying to go to work, he was trying to get up to go to pee in the bathroom. I worked really hard to keep his dignity to the end, but it was getting almost impossible. On this day, he could no longer sit up without help, but he sure tried every moment. The catheter was nightmare because he screamed in agony. I will never forget that scream of agony for as long as live. I laid next to him, holding him as he screamed in pain. Tears flowed down my face. Mind you, he was on so much morphine the nurse said it wouldn’t hurt, but it did.

For the rest of the day I had to lay in bed holding him. Why? Because he would cry and plead with me, “My love, I have to pee”. I would have to hold his frail, boney, yellow face ever so gently in my hands and say to him, “I know. It’s okay, look into my eyes. It is okay to pee, I got you”. He couldn’t understand that he could pee into the tube. Up to this point, I was helping him sit up in bed, put all his weight on me, swing his legs over and helping him pee into a cup. It was the only thing I could do because he wanted to walk to the bathroom, and he refused to use the little potty next to the bed. It was so hard. It was especially hard when I was constantly telling people they needed to leave our living room so I could care for him and help him pee with dignity!

I spent this entire day holding him, reassuring him everything was okay. He would lay in my arms crying, telling me he loved me and that he didn’t want to die. I would reply with, “I know,” and “I love you so much”. I would have to get up every hour to get his medicine because it was kept in the fridge, and he would say to me, “Please, don’t leave me”. I would look into his eyes and reassure him I would be right back with his medicine to make him feel better. He would cry, begging me not to go. With tears flowing down my face, I would run to the kitchen, grab everything as fast I could, and run back to his bed. I would lay on his bed talking to him as I’d take the needles and fill them with his medicine. He would ask if that was going to make him feel better. I would always reply letting him know it was a little medicine to make him feel better, filled with my love. We spent that whole day crying in each other’s arms. He was in so much pain, and he was so weak and tired. I was weak, exhausted and my soul was shattered.

The evening came and Art started to fall asleep. Finally, people had left. His best friend asked if we needed anything before he left. The nurse stopped in for her nightly visit. It was a long, traumatic day of pain, broken hearts and wondering how much longer this will go on. My daughter came out of her bedroom to spend the evening with her dad and me. She spent some time lying next to him. It was around midnight when we both retreated to our spots on the couch to rest for the evening. I would usually spend this time watching Art and his visions, and watch our baby girl sleep peacefully; hoping this would not scar her for the rest of her life.

I would lay there fearful of our future, thinking and feeling guilty that, as a mom, I had failed our daughter. My only job was to protect her, and I couldn’t protect her from any of this. For the first time in four days, I dozed off as tears flowed down my face and my body broke in exhaustion. Next thing I knew, my daughter was tapping my arm saying, “Mom, mom, dad is breathing weird”. I popped up and heard this loud crackling sound. It was coming from my husband.

His body was shaking, and he looked at me with this fear I had never seen before. I asked him if he was in pain, and tears flowed down his face as he nodded yes. I ran to get his medicine and ran back to administer it quickly. The last thing I ever wanted was for him to suffer and be in pain, but it felt like no matter how much medicine I gave him, he was in constant pain. The cancer was eating him alive, and it showed daily in my husband’s tears and pain. My daughter was right there, and we were hoping the medicine would help his breathing. His breathing became labored and his body was shaking. He grabbed for my daughter’s hand. I was lying next to him, holding his face close to me. I told him that if it was time for him to go, it was okay; we would be okay. I kept telling him how much we loved him. I could see in his eyes that he didn’t want to leave, but his body was shutting down. I just kept repeating over and over, “It’s okay. You can go. We will be okay.” The breathing and the shaking was getting worse. I was scared, but I had to reassure my husband that it was okay to go. I knew this was it, but I wasn’t ready to let go; yet, I had to. He was suffering, and his body was shutting down.

What felt like hours of watching him was only minutes. He took a long, crackling, painful breath out. Then he did it again; deep, painful, crackling breathe in. Inhale, exhale. With every breath I could see the pain in his eyes. I felt horrible because I didn’t know what to do except hold him, kiss his forehead and reassure him to let go.

inhale, exhale, inhale, exhale… “It’s okay, we love you, you can go……”

Inhale, Exhale, “We love you so much……”

 INHALE, EXHALE. My daughter says, “We love you dad……”

 INHALE, EXHALE. I whisper to him, “You’re the love of my life forever; it’s okay, you can go. We will be okay, I promise!”……………

Then it happened!

The biggest loudest, most crackling, painful inhale I have ever heard……………………

waiting …………….

waiting for the exhale…………………

There was none.

That was it. My daughter and I looked at each other. Was this it?  We would look at each other, then at him, and then back at each other. Like any mom would do, I put my finger under his nose to feel for his breath.

His grasp on our hands had collapsed, but we didn’t even notice because we were in shock. He didn’t die like in the movies. He didn’t die like hospice promised. He died in pain, with fear and tears in his eyes, grasping for breath.  With every breath brought extreme pain. One inhale and it was over!

I closed his eyes and kissed his lips. My daughter and I grabbed each other, holding each other. Sitting there in shock, tears slowly streaming down our faces. We stared at him in disbelief; stared at the man we both love with all of our hearts. He was now dead. Thirty-four days of hell brought us to this final moment of agony. He was gone. It was over in minutes. The man we love, gone, taken from us forever. The house was cold, dark, silent, as if the world knew that this moment was here. Our animals were quiet as if they knew what had just happened. Death was in the air and all around us.  We just sat there holding each other tightly, broken with shattered hearts sitting in silence.

He was gone.

Aloha and gratitude,

Jay and Shell