Once upon a time, there was a girl on a kitchen floor. Life just kind of pushed her there. Shoved her there, actually. The weight of the world crushed her into a heaping mess and she just needed a moment to breathe.
Okay, not like you couldn't guess already, but the girl on the floor was me. Shocking twist to this story, I know. Did you gasp in awe? Did you yell, "I CANNOT BELIEVE THIS TURN OF EVENTS!"
....probably not....
I think about that moment a lot, though. How I got there, how it felt, how I felt. I have a habit of doing that. When I'm in a moment I know I'll never forget, good or bad, I look around and focus in on everything and anything. Where I am, who I'm with, smells, colors, anything to help me remember this significant moment in my life. My mind is filled with this randomness:
- How the host felt in my hand at my first communion. I didn't eat it. I stuffed it in my white gloves because I thought it was gross. I ate it at my parent's kitchen table hours later....because they made me.
- The first time I held a cup of coffee in my girlfriend's apartment. I looked into the coffee, with hazelnut creamer swirling around, and, for the first time, felt so grown up.
- How the sand felt between my toes while searching, with our friends, for crabs on the beach in St. Lucia. And where Tim was standing as we happily bounced around the beach, rolling his eyes at our immaturity, while also taking in the sunset.
- How my grandfather's hand looked and felt as he sat in his recliner while his health declined. His age spots were never so clear to me before that day.
- How the chair felt as my father told me my mother would die. Where he stood, where my brother stood and where Tim stood, right next to our kitchen sink, with such sadness in his eyes because, as much he wanted to, he couldn't help me. However, he did buy me chicken nuggets later and, as ridiculous as this sounds, that helped an awful lot.
And this moment, sinking into the kitchen floor, would be no different or less significant. Come to think of it, it might actually be one of the most significant and defining moments of my life....
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I can still remember where I was sitting when Tim said, "Kristen, I think it's time we plan for the end of my life." I had just left work in the middle of the afternoon because I kind of knew those words would leave his mouth that day. I sat quietly in my car, took a deep, and focused on my surroundings. Unable to find a suitable reply in the wake of the severity of his sentence, I replied with, "Okay. While we're at it, let's plan for mine too." I remember the chuckle on the other end of the line, which no doubt was accompanied by a man shaking his head.
But it was time to plan for the end of Tim's life. He had been through so much and had fought so hard and nothing was working, and really, there was nothing left to do.
So there we were, hours later, sitting, just the two of us. Two young adults in their early 30's, discussing the end of one's life when most people our age were down the hall welcoming a new life to theirs.
His favorite primary care physician talked to us about hospice and together we chose to take Tim home. I remember how the doctor had sat across from us, perfectly relaxed, with one foot propped up. Tim had built special relationships with each doctor that had come into his life and I remember thinking how wonderful it was that this man could make us feel so normal, make this conversation feel normal, just by his casual tone and presence. I appreciated him. I think Tim did, too.
The next day, his family and I interviewed possible hospice care facilities. Luckily, or not so luckily, I had previous experience in this department, so I felt perfectly poised and prepared for what was to come.
At least I thought I was prepared.
But I wasn't.
When my mom was dying, my only job was to be supportive. I worked from my parent's house on Tuesdays to give my brother a break, but other than that, I didn't deal with her day to day care and I wasn't there in the middle of the night. My parents always did a wonderful job shielding me from any harsh reality and making any hardship seem effortless. Facing death had been no different.
Unlike my mother's hospice care, Tim's hospice of choice thought it would be best to transfer him, first, to their facility in downtown Chicago to, basically, take him off of his "legal" meds and onto his new "I could make a lot of money on the street if I had no conscience" meds. I wasn't too keen on the idea of transferring him to Chicago and then back to the suburbs, but they insisted that this would be the safest way to monitor Tim during his transition. AND the last thing we needed was an overdose, so I obliged.
Do you ever get nervous not knowing where you're driving? I do. I like to have everything mapped out. I'm the girl who's in the left-hand lane 10 minutes early because I know that's what turn I need to make next. Which is probably why I now have a navigation system that my father protested during my first post-marital purchase, but that's neither here nor there. This time, there was no time to plan and there was definitely no navigation. Within one hour, I was quickly handed directions, asked to co-sign some sort of a DNR (Do Not Resuscitate), watched my husband loaded up onto a stretcher and was left to hop into my car, alone, to follow him to his temporary hospice home. (Pretty sure something in there rhymed.)
So, naturally, when I maneuvered myself into the correct parking garage, over the indoor bridge, through doors, elevators and creepy after-hours hallways, I happily patted myself on the back when I reached my destination. Which must have looked pretty funny to the nurses behind the counter. I can't imagine many people arrive at hospice and celebrate upon entering the premises.
Not long after my celebratory entrance, my mood began to shift as the nurses started asking questions and not listening to my replies. The drugs that they had given my husband on transport had altered his state into that of a vegetable and I begged and pleaded with the nurses to lower whatever dosage they were told to give him. I remember yelling, "I HAVE POWER OF ATTORNEY AND I ORDER YOU TO STOP!" Like that was really going to do anything, but alert security. And still, no one listened.
A nurse took me aside and said, "Sweetheart, do you know what hospice is? People don't get better." I laughed in poor, little, sweet, naive, Florence Nightingale's face. "This isn't my first rodeo, honey." My positive attitude had completely left the building as my voice raised and security began to appear at either end of the hall. I leaned towards her and said, "Get me a doctor. I no longer want to talk to you."
While I waited for an intelligent adult who would acknowledge the fact that I was one as well, I looked around and quickly had come to the realization that I was alone and everyone around me was dying. I curled up in a comfortable chair next to Tim's bed, put my knees to my chest and tried to focus on my breathing. I was fighting back huge tears as his parents entered the room. Thank goodness. Someone who was finally on Tim's side.
The doctor and nurses listened to them. And the next morning, I found a normal Tim, watching Sports Center, and completely Tim-like as could be. Stupid nurse.
After a few long days in Chicago, Tim made the decision that it was time to come home. I was so happy to have him home. It's where he belonged, after all. He belonged in his home, in front of his television and surrounded by his stuff. Hospice had come to our house earlier and made sure we were equipped with a hospital bed, oxygen tanks, breathing treatments, bandages, walkers and more medical supplies than I knew what to do with.
A nurse had appeared, like Mary Poppins out of the sky, to teach me how to care for Tim. As a last attempt to prolong Tim's life, he had undergone a procedure that was unsuccessful. Because of this, he had a considerably sized wound on his abdomen and I had to be shown how to care for it and how to re-bandage it. Mary Poppins also taught me how to give him his medications, log his medications given, how to use his oxygen tanks and use his back up tanks (should we have lost power), how to empty his catheter bag, his NG (nasogastric) tube disposal and the list could go on and on and on.
Overwhelmed yet? So was I.
My mind wandered back to when my mother was in the hospital. The nurse's tasks and the hours they reported for duty intrigued me. I had said, "I'd like to be a nurse that doesn't deal with vomit or poop and doesn't see buttholes or gross things." My mother laughed and the nurse said, "Perhaps you should be anything else."
And here I was, two years later, sitting with a hospice nurse, rubber gloves on hands and she turns to me and says, "Now you're a nurse too."
Greaaaaaat. Be careful what you wish for, right?
Funny enough, minus a minor breathing incident that included an ambulance and 10 fireman in my home ("You smell like fire," I'd said as they stopped to stare at me in disbelief. No doubt shocked at my "Captain Obvious moment" during an intense situation...), Tim was an easy patient. He rarely complained, though it couldn't have been easy. In blog numero uno, I promised I wouldn't tell you what I saw and I promise to stick with that. I'll just simply say that it couldn't have been easy.
Luckily, Tim had a sense of humor in darker moments. I was, once, standing over him, singing, swaying, changing his dressings and I said, "Tim, I'm a good nurse, aren't I?" He slowly moved his oxygen mask from his face and said, "Hot nurse." The days back then run together, but I'm pretty sure his mom was there and we both REALLY got a kick out of that. It actually became part of our comedy routine when friends would sit down next to him for, what was most likely, an awkward goodbye.
"Tim! What kind of nurse am I? Tell them." "Hot," he'd raise his voice as best he could and say. It was always a nice icebreaker. We had a parade of visitors (I had counted close to 100) and it was never easy to watch our heartbroken friends and family sit down next to him to say one final goodbye. It was devastating and exhausting to watch over and over and it couldn't have been one bit easier on Tim. So we'd do our best to make jokes, and personally, that was my favorite one.
My most favorite "Hot Nurse" moment, however, is when Tim's beloved coworker sat quietly next to him. They had been extremely close and, as much as I adore her to this day, I had always been jealous of their friendship. I proudly yelled, "Tim! What kind of nurse am I?"
His reply after we had practiced 20 times?
"Shady at best."
To which the entire room laughed and Tim gave me a wink. As sick as Tim was, he never lost his sense of humor or his swagger.
But not every moment was an attempt at a happy one. I was extremely sleep deprived. I'd work all day, which was exhausting and strange in itself. Here I was in a land of normalcy and then I'd go home and sit with him all night. Our household was anything, but normal. Our household was a hospital.
I'd like to break for a moment to say how grateful I am that Tim's parents are as loving and dedicated as they are. They were rocks. And please forgive me if I ever fail to mention them or the rest of his family in any scenario. I don't feel as though it's fitting to give them a voice in a blog that's not theirs and I don't find it fitting to tell their tale. In life, our stories belong to us and us alone. This is just my story. I wouldn't want someone telling mine. But I do have to note that without his parents, I wouldn't have been able to continue to work. Because of them, I was able to feel a sense of normal from 9 to 5. And because of them Tim died knowing he was loved and that his parents, though I'm sure at times frustrated him like any good parents do, were just as amazing as he always had suspected.
When Tim came home, and it was obvious he could no longer climb the stairs, I had decided that I would no longer sleep in our bed. I would sleep next to him every night. I wanted to make sure he never felt completely alone. Little did I know that this was the beginning a habit that lasted far longer than it should have. I slept on that couch for months and months after Tim was gone. I guess I just felt comfortable there. Anyway, Oliver (our dog, in case you didn't know) would sleep on my lap and Tim would sleep in his hospital bed. Oliver and I would wake to give him his medications or to help him in any way he needed.
How did Oliver help, you ask? He got up every time I did, followed me to the refrigerator if Tim needed medication and followed me back to Tim's side. Sleep, stand, walk, repeat. Never underestimate the power of an animal's emotional support. Perhaps Oliver will get his own entry one day.
So one night in particular, Tim had an adverse reaction to his sleep medication which caused him to be freakishly awake. After the night nurse had informed me that this often happens, and that there wasn't anything I could do to help him sleep, Tim woke me up every 20 minutes to ask what we were doing. I would tell him that we were sleeping and he would ask why.
"Because it's 2:30 in the morning."
"Because it's 2:50 in the morning."
"Because it's 3:10 in the morning."
And so on and so forth.
Earlier in the day, Tim and I had two important conversations. The first conversation, I knew immediately, was important. The second conversation would prove important later.
During the first conversation, he had asked me if his health was declining. I was taken back by this question and didn't want to alarm him, but it clearly was the case. So I said, "Do you think it's declining?" He said yes and I ask him if he was scared. He, again, said yes, but also no.
Now this is one of those moments in your life that you know is so important, so beyond you, and no perfect answer will do. So I was honest and answered in the best Kristen way I could. "Tim, you're going to heaven where you're going to eat everything you want and be happy and we're all going to be pissed at you because you won't be here, asshole." He smiled, said that was good and fell back asleep.
The second conversation was a less "heavy" topic, but as I would come to find out, I should have paid closer attention and put more thought into my answer. He had asked to have his NG tube removed. I said casually and in passing, "We can discuss doing that later." Little did I know, that was probably not a good answer to give a man who is completely high on Lindsay Lohan strength medication.
At 3:30 in the morning, Tim decided it was time to remove it himself. When I realized what he was doing, I jumped off the couch, turned the light on and asked in complete horror what he was doing. He simply replied, "You said we could take this out later."
Drugs are a power thing, folks. Just say no. And always carefully plan your reply to a child, old person, or those who require high levels of morphine and oxycodone.
I, once again, took the deep breaths that I was now accustomed to taking and told him it was okay, waited for him to fall asleep and began the process of cleaning up the interesting mess that was made. I gathered the equipment, with every intention of cleaning it, and on my way to the sink I took a right instead of a left and just completely lost it. I opened the garage door, tossed it as far as I could in a temper tantrum like manner, shut the door, made it halfway through the kitchen and collapsed.
I was completely defeated. Hospice, death, medications, wounds. It sat on my shoulders and pushed me to the floor. It felt nice down there, though. The hardwood was cold, the room was dark and from where I sat, nobody could see me cry. I was exhausted.
A few days prior, a social worker had been summoned to the house to stage a Kristen intervention. She suggested Tim be sent back to the hospice facility to be cared for until the end of his life. They could see how exhausted I was. They could see what had been sitting on my shoulders. And yet I said no. And not because I'm a saint. Not because I'm a perfect wife. But because I said in sickness and in health and this was sickness. And sickness wasn't meant to be easy. We'll discuss more later, but my actions weren't always perfect throughout his entire illness, but in this home stretch, I was determined to be every reason Tim married me in the first place. He deserved what I would want if he were healthy and I had been the one laying in that bed. "He stays here," I'd said. I will never regret that decision.
But in that moment, as I sat on the floor, I wanted a normal life. I wondered why God had chosen Tim for this fate and why I was along for the ride.
Have you ever had a moment like that? There's no starving children in the world. There's no poverty or war. There's no gangs or drugs or violence. Your problem, the weight on your shoulders that's dragging you down, no one can understand it and no problem seems worse.
Why him?
Why me?
Why us?
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What happened next is the moral of this story and the reason, I guess, I'm writing this. I don't really spend so much time thinking about how I felt defeated or exhausted or sad. I focus on the fact that I'm not still sitting on that kitchen floor. I stood up. I let myself sit on the kitchen floor and feel sorry for my husband, myself and our families for a little bit, but then I gathered my strength, my thoughts and whatever grace I had left to give…and I stood.
I wiped away my tears, I put my hands and feet to the cold floor and hoisted myself back into an upright position. I made one of the lowest points in my life (literally, I mean, I was on the floor) one of the most significant.
I've learned that when life pushes you to the floor, sometimes it's okay let it. Then you re-group and you stand when you're ready. I mean, you could stay on the floor if you want to. I could have stayed there. We can all give up and sink into the earth's surface as far as it'll let us. But that's not life. That's failure. And I, personally, refuse to fail. And any time I feel like something is too difficult or any task is too daunting, I think about the girl on the floor. I hope maybe someone who reads this, and feels like that girl, will get back up too. Because I stood back up. And it gets better.
So that's it. That's all she wrote. That's the story of the girl on the floor. The "anonymous" girl on the floor. I know stories that start with "Once upon a time" typically end with, "And they all lived happily ever after." But our story doesn't have your typical happy ending. It's kind of hard to put a positive spin on endings like ours. But I've learned to make the best in any situation. I've learned to take life's lemons, throw them back in life's face, call it a bitch and order it to make me lemonade. I've learned to be an optimist. And an optimist would tell you, "and they all lived happily ever after, for she who was on the kitchen floor continues to stand………and he gets to eat what he wants." But I'll tell you more later.
