May 10, 2012. The hospital bed arrived today. They set it up in the family room, overlooking Wayne's beautiful garden. Wayne's in the house watching westerns. From the garden, I call our good friend and leader of our Rosary Foundation, Ray Skop. Ray is known as "the holy man with a twist" He's a little psychic, actually he's very psychic.
I tell Ray that the Dr has ordered hospice for Wayne, but she doesn't think Wayne is going to die anytime soon.
I ask Ray, "what do you think?"
Ray asks me, "Do you really want to know?"
I stop and think... "Yes, I really want to know."
Ray says, "Wayne is getting ready to cross over."
I'm stunned. "Really, really Ray?"
Ray pauses for a minute and tells me that Wayne is like the cat with nine lives. He's already surprised the doctors and all of us many times with his ability to bounce back. He could have more time. One more chance.
May 11, 2012. Wayne decides the hospital bed is pretty nice. It's more comfortable than he thought it would be. It's good for hanging out and watching TV. He didn't sleep in it the first night. He's always slept with me in our bed. But he decides he'll try to sleep in the hospital bed tonight, because it's getting much harder for Wayne to get in and out of our big bed. We walk to the bathroom together to get washed up. Wayne is having a really hard time walking. He comments, "I don't know how much longer I can do this" I tell him not to worry, we are a team.
May 12, 2012. Morning. Wayne and I are up and ready to meet the Hospice nurses for the first time. He's siting in his recliner chair. Jessica and Amanda,our daughters are here. The nurses go over the new medications. I ask how I'm going to get him to his next MRI appointment, which is May 31. The nurse looks at me. She says, "You won't be going to any more MRI appointments. I look at Wayne. He looks at me. Time stops.
Afternoon. My best childhood friend Linda comes to visit. Her truck is full of plants for the garden. Wayne spends the afternoon in his recliner chair. He gives us the best advice on where to plant each plant. Our younger daughter, Amanda spends the afternoon with Linda in the garden. Our older daughter, Jessica spends time watching old family videos with her dad. Jess tells Wayne that she wishes she'd spent more time with him. He tells her, "Don't worry, we have plenty of time...."
Evening. Wayne starts a nosebleed. He's had a few before, but this is serious. Jess and Amanda try to pack his nose, but Wayne is very uncomfortable and agitated. He's in pain. I call hospice. They direct me to give him his anxiety meds, and cough syrup. Finally, Waybe is comfortable. He wants to sleep in his recliner, not his hospital bed. After a few hours he asks to sleep in his hospital bed. I go to sleep in the next room with the door open. I make a mental note to get a cot so I can sleep next to him.
May 13, 2012. 1:00AM. Wayne is calling me. I find him very uncomfortable. He's in pain and his nose is bleeding again. I tell him I'm going to call Hospice for advice. He looks at me, "Take me to the hospital"
I tell him, "We can't go to the hospital, we're on Hospice now!"
He looks at me again, "Take me to the hospital".
I remember my friend Linda told me that the US Hospice Laws have changed. If I want to, I can sign Wayne off Hospice, and take him to the hospital. Maybe the miracle workers at Sloan and patch him up and fix whatever is going on.
I notify Hospice. The hospice nurse comes at 2:00AM to try to talk me out of taking Wayne to the hospital. She takes a look at me and the suitcase I've packed for the hospital. She gets out the paperwork to sign him off Hospice. She tries to help me get Wayne out the door and into the car. I'm guiding Wayne step by step toward the door. As Wayne and I attempt the first step down to the walkway, he collapses in my arms. I pray for strength and fish my cell phone out of my pocket, and call our nephew, Christian. It's now 3:00AM. Christian arrives in 5 minutes. He carries his Uncle Wayne to the car.
Rod Stewart serenades us as we race up the NJ Turnpike. When we pull up to the curb in front of the hospital, I wonder how I'm going to get Wayne out of the car. Mercifully the night watchman agrees to help. Finally we get an extremely debilitated and and weak Wayne into the wheelchair with the assistance of a helpful bystander. 5:00 AM. Wayne is settled in a hospital bed in the Urgent Care Center. A kind nurse has offered me an empty bed and I drift in and out of sleep.
I hear a familiar voice and realize it's our younger daughter, Amanda. She's figured out that we're here. And as she has before, she caught the early train into the city. Together with the nurses we try to make Wayne comfortable.
Hours pass, Wayne is admitted and given a room on the 5th floor. My memories here are very fuzzy, I vaguely remember Wayne screaming out in pain when the nurses try to move him from the stretcher to the hospital bed.
Amanda wants to take me out to eat. I'm startled, I haven't thought about food. "But Mom," she gives me a tired smile, "I want to take you out for dinner, it's Mother's Day."
We walk to one of the many restaurants near the hospital. We order wine with our dinner. The waiters are especially kind to us. They bring us more wine on the house and serve it with a flourish. We smile, then there are tears. Amanda has a look in her eye that I've never seen before. "We have to tell Daddy that it's ok for him to go."
I look at my daughter. "Yes," I agree, "We should tell him today."
Later, back at Wayne's bedside Amanda sits at the foot of her father's bed. "Daddy, we love you. You don't have to fight anymore. It's ok. We'll be ok. It's ok if you want to go..."
Wayne looks at me. I nod my head. "It's ok if you want to go, I love you."
Wayne simply nods his head.
Looking back I can't even fathom this...
Monday, May 14, 2012. The doctors tell me that Wayne is very fragile. He needs to be on hospice, but they do not recommend home hospice. Complicating matters is the fact that Wayne at 58 is not eligible for Medicare, making our options limited to what our non-medicare health insurance will provide. My husband is a pawn in this medical nightmare.
Tuesday, May 15, 2012. After much exhaustive research and finagling that takes up most of the day, we finally get our local hospital back home in NJ to accept Wayne as a hospice inpatient. At last, all is in place.
6:30 PM. Wayne and I are traveling by ambulance from Memorial Sloan Kettering Cancer Center to Riverview Medical Center Hospice.
On a few levels Wayne enjoys the ride...Our attending EMT is named Jesus. OK, Jesus is taking us to hospice.
Through the window of the ambulance Wayne and I observe the NY skyline diminish. Wayne looks at me and says, "We're not doing this again."
I nod my head in agreement.
Wayne holds my gaze and repeats, "We're not doing this... again."
I look into his eyes, "No, we're not."
Wednesday, May 16, 2012. Wayne needs so much care. I'm grateful we are not at home. Wayne is surrounded by our daughters, his parents, sister, nephews, my mom, my brother, cousins, Aunts, Uncles, and friends. The nurses are concerned, there are too many visitors. The nurses volunteer to screen the visitors, they send most to the waiting room indefinitely. ...
Wayne is getting IV morphine, continuously. He has faded out of consciousness, and is in a morphine induced coma. Our daughter, Jessica questions me about the fact that the doctors think Wayne has weeks to live. She thinks his time is much shorter than that. ... days, not weeks. I ask the head nurse, she agrees, "We don't have a crystal ball, but yes, days..."
Thursday, May 17, 2012. Father Chris from St James Church comes to give the last sacrament and say the rosary with Wayne. He announces himself and asks Wayne if he wants to say the Rosary. Wayne has his rosary in his hands at all times, even now. Wayne opens his eyes and says, "Yes" to Father Chris.
Later I tell Wayne, "I love you..." and he opens his eyes wide and says, "I love you."
Friday, May 18, 2012. Wayne seems to be in a deeper coma. We spend the hours sitting by his bedside.
Saturday, May 19, 2012. Spending precious hours with the love of my life.
11:30PM. It's late, we are all sleepy. I send our daughters to bed. I lay down on my little bed, right next to Wayne's hospital bed. I drift off to sleep.
Sunday, May 20, 2012. 12:07 AM. The nurse wakes me up. Wayne is gone.
I often wonder if Wayne waited for us all to go to sleep. If he waited until we were all safe within our dreams to finally take his leave. He didn't want to say Good-bye.