It was the one thing he always understood.
“I love you,” he looked into my eyes and half-mouthed, half-whispered back.
I sat down and opened up my laptop. And I ordered the GPS he wanted. I didn’t know what he was going to do with it. But maybe both of us were headed into unknown territory after all. And we were going to be in need of some serious guidance.
—
“I’M GONNA take him home,” I announced Tuesday morning.
I think I knew in my heart that this was what I wanted to do, but it’s my nature to think things through, look at all the angles when I’m dealing with something unfamiliar. Having never been in this situation before, I didn’t know what to expect. And there was much that was still unknown. Once I had decided we were going home, things started to move quickly. I met with the aftercare people, and they arranged for a delivery of supplies that would be waiting when we got home, and they asked me, “Do you want the hospice nurse to be there to meet you when you get home?”
I had provided Patrick’s home care for the last twenty-two months, so I calmly said, “No, that won’t be necessary. Tomorrow around noon would be fine.”
It turned out to be a happy choice that I decided to take him home. On September 9, the very day we were to leave the hospital, we found that a leak had been made to the tabloids:
SEPT 9, 09 Patrick Swayze GOES HOME TO DIE . . . sometimes needs oxygen to breathe . . . “I refuse to die in a hospital room. I’ll go on my own terms—in our home and in my own bed.”
We are soooo outta here.
Bill Mancini, our security man who had so generously provided security for Patrick another time he was at Cedars-Sinai, provided a way to get out of the hospital safely, which involved exiting our current building and skirting through another that was under construction. Patient Relations freaked when they heard that we had an alternative plan that they weren’t informed of. But Bill was prepared and confident, and was not about to be deterred from his master plan.
Bill would be taking him through the north end of the hospital to a waiting SUV. I was going to exit the hospital from the general parking area by myself, thus, we hoped, offering confusion to any paparazzi who might spot me.
At five o’clock, we loaded all our bits and pieces into plastic hospital bags and hung them on Patrick’s wheelchair like we usually did. And then, Patrick was helped onto the chair, moving slowly, his cowboy hat perched low on his head. I kissed him. We were all set to move, and Bill stopped.
“Wait a minute,” and he took me aside, fidgeting slightly, “What if . . . what if . . . something happens on the way home?”
I squinted, trying to make sure I understood what he was saying.
“What I’m saying is . . . What if he dies?” he asked.
I could tell it was painful for him to broach such a sensitive question. I shook my head with certainty.
“He’s not going to die on the way home.”
Bill looked hesitant.
But I knew beyond the shadow of a doubt. I shook my head again, “He’s not going to die on the way home.” Then I added, “Look . . . I’m following you and won’t be far behind. If something happens, you can call my cell, and I’ll be there. But he’s going to make it home.”
Bill nodded. And we were on the move.
—
AS I drove north, back to Rancho Bizarro, I don’t remember looking toward the plumes of smoke that still blanketed the sky behind our ranch. But I’m sure I saw them there. The Station Fire was going to burn for more than another month before it was finally extinguished in mid-October. Our ranch was out of immediate danger, though. And for me, if there was a fire still burning, covering everything outside with a layer of fine gray soot, it was of little concern.
But I do remember turning into our gate and driving down to the house. It was just starting to turn to dusk, and Bill was helping Patrick out of the car. We were home.
At Rancho de Días Alegres, New Mexico.
Chapter 23
HOME AT LAST
I never thought I’d see death coming a mile away.
I thought it’d always sneak up on me, find me unprepared. With my pants down.
But no, in this case I see its specter looming in the distance,
positioning itself, waiting, waiting with confidence
for the one.
And I suit up in my karate gi.
I take a stance of defense and combat as I move into death standing there before
me. Examining its MO, Trying to find its weak parts,
its mercy,
any shred of negotiation.
And death is looking at my puny little form as I pace back and forth with all the
courage and menace I can muster. Is looking at the outline of my body as if in an
X-ray, seeing only black and white.
And for all my courage and menace, it only sees where it’s going to bruise me as
I resist it. The side of my rib cage. The back of my neck. My fatty thigh . . .
And then, if I really try to hurt it, if I don’t back off,
it sees where a blow that swipes (and blockquotei1s) straight down from my throat thru
my sternum down to my diaphragm that might just break my heart.
He’s tried it before, maybe this time, maybe this time . . .
I call to it
It doesn’t answer.
I plead to it.
It doesn’t answer.
I never thought I’d see death coming a mile away. But time is carrying me and the
one I love to it. And that’s why it waits so confidently.
It doesn’t care about me.
It doesn’t care about my losing the love of my life.
I’m merely a curiosity of feelings it will never understand. Me, the nuisance.
Like a fly that won’t go away.
And its silence says, “Get out of the way. Or, get hurt.”
It’s as simple as that.
Fall 2009
I FIND myself wanting to talk about Christmas 2010. Over a year after Patrick had died . . . How Lucio, my longtime groom and horse caregiver for the past twenty-two years was about to retire and how it was like I was losing a piece of my, of our, family. It was going to be a tough adjustment without him . . .
But seriously . . .
It’s very hard to talk about the last days in Patrick’s life.
I find myself avoiding it. Finding reasons to justify putting off telling this part of the story until next month, like I’ve found reasons to justify putting it off for the last several weeks.
Why?
Because it’s so hard to describe what is . . . a state of grace.
A time that was so horrible. And so loving at the same time.
A time that changed my life . . . forever.
I know there are no words to describe what really went on . . . In the same way that, no matter how many times I said “I love you” to him (and there were many, many, many, many times I did), it would never be enough. Words are incredibly poor substitutes for enormous feelings. Feelings of despair, and of love.
I really don’t feel like I can do those emotions justice. And I have to take the onus off telling this part of the story by telling you that.
And as I prepare to talk about these last few days, I already feel an emotion of massive grief. A grief that would rule my life for the next year and more. And in a tantalizing, shimmering instant—a glimpse into a love that transcends . . . A love that shakes you. That expands your heart beyond the boundaries of air.
—
WE ARRIVED home at six o’clock in the evening on that pleasantly warm Wednesday. Patrick was in and out of a kind of tired lucidity, and it was difficult for him to concentrate on anything. He was also very weak, and though he was still somewhat mobile, he needed a lot of assistance and guidance. It was quiet in the house. So quiet . . . Like the whole world had gone away.
I settled him in and discovered the bag t
hat sat waiting on our fireplace hearth in the bedroom. As promised, it was the bag of supplies delivered by the hospice people. I opened it and found a stash of new drugs, with new instructions; Haldol, an antipsychotic, for anxiety, nausea, vomiting, Atropine, 1 percent solution, three to four drops in the mouth, Acetaminophen suppositories, for temperatures greater that 101, Ativan, to be administered sublingually or rectally . . . things I hadn’t heard of or seen before and instructions that were new to me. And I was flooded with a panic and fear that I had just made the biggest mistake of my life by bringing him home.
How stupid could I be? How incredibly stupid? I am completely out of my league here. I’m a fool! Panic was rising into my throat.
I forced myself to remain calm. With regret, I harkened back to my cavalier response earlier that day, “No, no, I don’t need the hospice people to meet me tonight. Just have them come tomorrow at noon. I’ll be fine tonight.” I’m sure that some of my panic was due to the nature of the situation and feeling so all alone, and not just the new drugs. But my being frightened that I’d make a mistake made me hypervigilant. I fretted that I might do something that was not in Patrick’s best interest, or that my lack of knowledge might make things painful for him. I had all these strange new drugs . . . And because he was not completely cognizant, he was not of much help in letting me know what was going on with him. I weighed whether I should make a mayday call, and I decided to “hang tough” for the moment. I thought I could get him through the night without mishap, then I would have all answers on his care and the strange bag of drugs tomorrow.
And the night did pass without incident, except that Patrick got up and wandered around while I was still asleep. And that was cause for concern, since he hadn’t been able to walk without assistance for days. But somehow, he found the energy. It was early in the morning as Donny prepared to go to San Diego to run an errand he’d been putting off for a long time. Donny figured he’d zip down there for the day and make it back by early evening . . . when suddenly, Patrick was standing outside his door, leaning against the hallway wall, his eyes bright!
“Where are you going?” Patrick asked emphatically, as if he was immensely perturbed.
“I’ve got to go down to San Diego,” a surprised Donny said.
“Why??”
Donny carefully explained the trip he had to make and that he would be back after that . . . he felt like he was talking to a little kid, all the while wondering how the hell Patrick had gotten up the three steps out of our bedroom by himself!
Donny helped him back into the bedroom and to bed before he left.
Me? I slept through the whole thing. And when I heard about Patrick’s early morning stroll, I was even more concerned than ever that he’d run afoul of some trouble in the middle of the night. But the ladies who were about to visit had some ideas about that.
—
TINA, THE hospice nurse, and Sharon, the RN who oversees all the nurses in the hospice’s organization, arrived. Tina, a large, beautiful black woman, was a little surprised to find Patrick Swayze waiting for her care. She was totally warm and professional while she was here, but after she left, she turned to Sharon and said, “You could have warned me about who we were seeing.” To which a flustered Sharon replied, “I thought I did!”
I was grateful that these two ladies showed up. They were warm, loving, sensitive, and knowledgeable. Sharon in particular was to help me navigate these new waters. Both were to teach me things I didn’t know yet.
There is a huge difference between “trying to make better” and “trying to make comfortable.” It’s like leaving planet Earth, with its hospitals and doctors, and moving to a whole new planet with a new country, rules, and languages. Don’t ask the doctors how this part of the journey will go. Unless they’ve gone through it themselves, they don’t know and they can’t tell you. These women who were visiting Patrick and me could.
This part of care is its own art form. And the transition to learning this was a little tough and jarring for someone like me, who had battled for the last twenty-one months so fiercely to help make the one I loved better. First came removing any last treatments. This entailed stopping the antibiotics that Donny and I were still hooking up for him. Not giving him the Albumin that he had needed to replenish the protein levels in his blood after his last drain/paracentesis, and some of the drugs and supplements that had always been on his daily list of treatments. These items were about making him “better” and would only get in the way of letting his body do what it needed to do—move into its process of shutting down. Why would I want to give him something that would make this process more difficult for him, that would possibly make him suffer longer than he needed to? This was a hard thought to wrap my head around, but not impossible. It was another learning curve.
I was also told that to give him IV fluids was not a good idea. His body could drown in them, his lungs could fill . . . “The body can’t handle it,” said Sharon. “It’s why people stop eating, stop drinking near the end . . . their body is saying, ‘Leave me alone, I’ve already got so much I’m doing.’” If you drizzle water down their throat, they can choke on it if they are unable to swallow. But you can moisten the gums, the lips . . .
“But dehydration?” I asked.
“Dehydration is actually a preferable way to go,” Sharon said calmly and evenly, “it’s painless.”
There was also learning their tips on the more basic care: feeding, not feeding, drinking, not drinking, lips, eyes, and new supplies and instructions to take care of hygiene. Like I said, it was another art form, and they did things quite differently.
Oh, and the wandering at night?
“Put some little bells or something on his tray table,” said Sharon. “When he moves it out of the way to get out of bed, they’ll ring, and it’ll wake you up.”
I couldn’t believe it! I felt like a bonehead. I’d agonized about this for almost a year without coming up with any solutions. Bells! Of course!
I worried about Patrick’s heart. It beat so strongly. I was afraid his heart would not let him go when he needed to. That it would keep beating, keep hanging in there, and hurt him. And I believe if his heart had been weaker, he would not have lasted the extra days that he did. But damn, even now he was so strong!
It was strange to suddenly have to learn the finer points of how to not interfere with death, but step in enough to make sure that the person you’re caring for is comfortable. And if he wasn’t lucid, how did you know if he was comfortable or not? They had tips on that also. “Grimacing. Grimacing was one of the ways to know.” And Patrick did his fair share of grimacing. They wanted to “up” his base dosage of Dilaudid by almost four times, not just for his pain, but also to keep him calm. But I was wary of the effects of too much Dilaudid on Patrick and opted for a lower base rate, but with a higher bolus “press the button” dose that we could press every twenty minutes if needed.
After two hours of instructions, much discussion, and two pamphlets dealing with various physical and emotional situations, and one on the nuts and bolts of the dying experience, Sharon and Tina left. They’d be back again tomorrow.
You’re going? I wanted to say incredulously. Somehow I had thought they’d be there all day. I resisted the urge to grab their arms and firmly guide them back into the room. But after they were gone, I was okay. I had a game plan now. Whereas before, I had done my best to help Patrick to live, I now had to focus on being the best I could be at helping him in these last days. I was armed with some knowledge now. That, and a cell phone number. And this new focus gave me a purpose. A purpose that was filled with the unconditional love and care that I felt for him.
—
THAT THURSDAY, Patrick and I sat outside for much of the day enjoying the fresh air. I went into the kitchen to get some soup and as I was going back outside, through the windows I could see Patrick sitting, looking out over the yard and pool, the dogs lying around him . . . I knew I had made the right decision in bringin
g him home, even if it was only for a few moments that he was truly aware and could enjoy his time here.
When the sun was going down and it was getting cold, I helped him back into the house and into bed. He was in and out, sometimes talking slowly but clearly, sometimes mumbling, mostly quiet and gentle. When we were ready to go to sleep, I moved the tray table next to his side of the bed and hung small, light chimes on it so that when he got out of bed, I would hear them and wake up. And after I set him up in bed, I lay next to him, the bolus/button clamped in my hand. He had looked uncomfortable, and I ascertained that he really did need the extra Dilaudid. So, throughout the night, every twenty minutes, I pressed the button. And I pressed it every twenty minutes until Sharon and Tina showed up the next day.
—
“WE NEED to reprogram the pump,” I sighed tiredly. “I spent all night pressing that thing. But who knows how many times I might have missed during the night because I was sleeping.”
“Well, we can see just how much,” Tina said as she accessed the memory on the pump. She peered at the numbers, “Oh . . . You didn’t sleep at all last night, did you?”
Worth Fighting For: Love, Loss, and Moving Forward Page 26