Thursday, September 4, 2014

How I Learned to Love Unconditionally

That drive. The one across northern Illinois, with cornfields whizzing past, fields of green rows tightly bookending the long stretch of road ahead. Anger. Frustration. Foreboding. Knowing it is "not good." Visualizing two parents sitting together in a hospital room, one in a bed as the patient, the other in a side chair trying to appear unworried. I procrastinated leaving the house and getting on the road. "Your father is in the ICU with less than 10% kidney function." Surely that statement demands urgency. But I delayed. I didn't want to get there fast. I didn't want to face reality.

I thought about the last time I saw him. At our cabin. He was sick - that was clear. He didn't say a lot. He made his way to his favorite place - to the wooden adirondack swing in the backyard, overlooking the lake. He asked me to sit down for awhile. My inclination was to rush back inside, to finish preparing lunch. But my friend's sage advice rang out in my head. "Spend time with them while you can. You never know when they'll be gone. Talk to them. Love them." So I sat down next to him and we glided back and forth and looked out at the lake together. He asked me about my exercise pants. I tried to explain why I like them. He didn't understand.

I walked him to and from the driveway. He with his cane, me holding out my forearm on the other side to offer additional support. Normally I don't watch him walk the steps - I can't bear seeing him fall. I'm OK helping him up; I just can't stand the thought of watching him fall down. But this time I walked with him every time, offering the extra help he needed to climb the steps. And he didn't fall.

These thoughts ran through my head as row after row of corn flew by.

Anger and frustration returned. Why didn't I insist he go to the ER in Wisconsin two weeks earlier? Why didn't I call the nephrologist myself and demand an earlier appointment? Why didn't his primary care physician admit him immediately the day before? I knew I had to get these feelings out of my head, because they would not help when I walked into that hospital room. All that would matter was the present, and going forward. So I let the anger consume me on the drive.

In the hospital parking lot, I read a brief synopsis online regarding his condition. The reality I avoided slapped me in the face: "The mortality rate in patients in intensive care settings with Acute Kidney Failure that require dialysis is 70-80%."

My dad was going to die.

When I walked in, there he was. There she was. Like fixtures permanently decorating the room. Settled into the environment. Exhaustion on their faces.

"Hey, Dad. How do you feel?"

"Like Horseshit."

Even near death, he can joke and make people around him laugh.

We left him that night, confident about his care in ICU. I truly didn't expect a call, because he was stable when we left. Not well, but stable. The midnight ringing jarred me awake, even though I wasn't really sleeping. Breathless, I answered, hoping it wasn't the hospital, but knowing it was. "Hello?"

The words on the other end were calm but grave. "Your father is having problems breathing. We put a biPAP on him, but if his oxygen and CO2 levels don't improve in the next 15 minutes we are going to have to intubate him."

Intubation. A tube snaked down his throat to suck the fluid out of his lungs. I relayed the information to my mom, standing there next to me, and her shoulders drooped, extreme fatigue weighing her down. She cried out, exhausted, desperate. She insisted we rush back to the hospital to be with him.

She was right. We had to be there.

I watched my dad thrash around in the bed, trying to rid his head of the contraption helping him breathe. We tried reasoning with him, using soothing words to rid the panicked look in his eyes. He knew he was in trouble, and he was terrified. He lay calm for a few moments, then began crying out, his angst muffled by the whooshing air of the machine. We could tell he was begging to be free of the mask. Confused, his heart rate climbed as he franticly tugged at the straps on his head. He reminded me of a sick baby in a crib, unable to be consoled despite every effort by the mama. The nurse called in a request for anti-anxiety medication.

But with my mother stroking his chest and me holding his hand, he finally let the machine breathe for him. His body stilled. He closed his eyes and fell asleep.

The next morning looked up. Scary words like "dialysis" and "biopsy" hung in the air, but provided a sliver of hope. Something to make him feel better. I grasped every word the very experienced, compassionate nurse uttered. I asked her to confirm my dread. That 70-80% number.

She paused before answering, so I knew she gave my question careful consideration. "He is not the sickest patient I've worked with before. But he has a lot of issues. I give him a 50% chance of walking out of here."

Fifty percent. Half. One out of two. Glass half full. But glass half empty. Two men, side by side, one stays, and one goes. All of these thoughts rushed through my head. We were not yet out of the woods.
Receiving some blood to increase his hemoglobin level. I'd never before seen so many IVs in a person at one time.
I sat by my father's bed that day as he received two units of blood, and watched him confusedly answer health care professional after health care professional. "Can you tell me your name?"

His eyes darted around the room. He paused. The nurse waited. Finally he remembered his name. "John." Uncomfortably long pause. "Kahling."

"Date of birth?"

Pause. He blankly stared at the wall, then the glanced my way. I couldn't answer for him so I repeated the question. "Dad, what's your birthday?"

He looked over my shoulder into nothing. The million mile stare. One of the scariest things to see in a loved one, because you know their brain is not functioning the way it should or the way it can. I watched my dad consumed by health issues, unable to communicate the simplest of questions. "I don't know."

My heart broke. The nurse tried again. "Who's the president?"

In my mind: "You know this, Dad. You voted for the sucker. We yelled at you for it. You regretted it later. You know this. You know this."

"I don't know."

"What year is it?"

Bewildered now, he just stared back at her. Then looked at me for help. I wanted to shout it out, but I knew I couldn't. More heartbreak.

"I don't know."

It was then that I thought to myself, "I am watching my father die." I blinked back the tears, refusing to let him see my panic. But the thought consumed me. I knew it was the beginning of the end. I just questioned how long the end would be, and how much time we had left.

Fast forward. A dialysis treatment, and he felt better. A blessed night in a bed for my Mom for more than two hours, with no phone calls from the hospital. A much perkier father the next morning. Another dialysis treatment, and a confession from the patient.

"They yelled "code" something the other night. I thought I was dying. I couldn't breathe."

We confirmed his fears, consoling him with the truth that the biPAP machine to the left of his bed saved his life. And the dialysis machine to his right would continue to save his life.

"When can I get out of here?"

Ugh. Now it was time to start giving him some of that reality. Not the 50% number, but a watered down version of his new truth. We started slowly. We used words like "uphill battle" and "unknown" and "waiting for biopsy results until we know."

He didn't understand, as evidenced by the shaking of his head. We kept it light and changed the subject. Baby steps. One at a time.

Friday dawned with new hope. I arrived early that morning, eager to assume my position as caregiver advocate so my mother could rest her body, mind and soul for the march ahead without me for a few days. The nurses whispered the possibility of moving him to a regular room. That 50% number reduced drastically.

I walked into the darkened room, happy to see my dad up and sitting in the chair already. "Hey pops. How are ya?"

"Good. Real good. Where is she?"

He immediately noticed the absence of his most beloved. My mom.

"I let her sleep." Having some health problems of her own, Mom really needed to rest, especially considering she clocked mere hours of sleep over the past 4 days, most of those in a straight-backed chair next to his bed.

"So you feel pretty good?" Skeptical, I let the sliver of hopeful sunlight grow a little larger. "Really?"

"Yep. I had some coffee."

The less we have, the more the little things matter. Like a hot cup of good coffee. Or a singularly lovely glass of wine. Sometimes in the face of disaster, the little things make normal peer around the corner, it's hopefulness shrouded in black, earthy goodness steaming out of the top of a mug.

"So you had a cup of coffee. That's nice."

"Nope."

"Nope, what?"

He held up three fingers. Incredulous, my eyebrows shot to the ceiling. "You had three cups of coffee?" Knowing he was on - or at least would be on - a restrictive diet that limited daily fluid intake, I was surprised the ICU nurses gave him that much Joe.

"Yep. Three." He smiled that devilish grin, the same one he uses when playing a prank on someone, the same one that landed him at least a dozen black eyes when he was a young punk running around town playing pickup baseball games.

"Lemme guess," I ventured. "You got the night nurse to give you one."

"Yep."

"Then the day nurse came on, and you got her to pour you one."

"Yep. I just said, 'Sweetie, can you please give me a cup of coffee?'"

I rolled my eyes. I could just see it evolving. "You sure can be pleasant when you want to. And then what? You asked the aide?"

"Yep. And she gave me one too." He threw his head back and laughed at his good fortune.

What a brat. But I didn't care. He was happy, and giggly, and finally acting like himself. I sat on the bed facing him. He likes us to sit right in front of him, so he can look at us. Not too far to the side, not with the curtain blocking his view of us. Head on. His girls. He wants to see us.

"So when is she coming?"

"Soon, Dad. When she gets up, and has some coffee and breakfast. After she makes some phone calls. She needs a non-rushed morning. I'm here though. I'm not going anywhere."

Suddenly his shoulders slumped and he started to shake. Tears rolled down his cheeks. Giant man-sobs broke free, his pain no longer shrouded by joking the staff into morning doses of adrenaline. He wailed, and I reached out to circle his neck in a hug, pulling him close to me. Remarkably, I didn't sob with him. I let him go, and for once, I was the rock for my dad.

Between the sobs, he cried out. "My fuckin' kidneys! They don't work no more!"

"No, Dad, they don't." Even with him, I have to say it like it is. I couldn't sugar coat it when it came down to it. But not one to lay an entirely depressing bomb on him, I appealed to my cocktail-half-full side. "You got in here in the nick of time. There's a machine in the corner of this room that is keeping you alive, and will continue to do so. You're getting moved upstairs today. You're still alive."

He pulled back from my embrace as I whispered these things into his ear. He cleared away the tears and looked me in the eye. "Yep. You're right." And just like that, he was OK again. "Now when's she coming?"

"Soon, Dad, soon. By lunchtime."

We sat together and occasionally talked about unimportant things - the weather, his yard, when he might go upstairs, our cabin in Wisconsin. "You really want to live there, huh?"

"Yes. The sooner the better. Maybe even sooner than we originally planned."

He laughed-cried with a hiccup. "Well that's good. That's real good."

He's a man of little words. But oftentimes profound. Sometimes sensible. But sometimes not. His Primary Care Physician entered the room. "Jack, how are you doing?"

"I got a question for you, Doc. When can I shave?"

Seriously. The dude's on his deathbed two days ago, and he wants to get the stubble off his face. Silly man. Even the doctor thought so, as evidenced by his response. "You really worried about that?"

We all chuckled. My dad is old school. After suffering a debilitating stroke at the age of 52 leaving him both mentally and physically disabled, he still swears by the regular shave and crew cut. Mr. Musky drives him batshit, with his sexy-long curly hair and rugged goatee that gets trimmed up once or twice a week. Not my dad. That man is clean shaven consistently, and if he misses a day, let alone a week, it drives him nutty.

The doctor continued with his daily spiel, then left to check on other patients. The nephrologist entered the room and introduced himself. It was his first day on rounds as he replaced his partner who we saw earlier in the week.

I saw my dad's shoulders drop again, and I knew it was coming. More sobbing. Seeing your dad overcome by defenseless, humbling emotion is gut wrenching. He choked out his question for this doctor: "Why did my kidneys stop working?"

The compassionate doctor looked him in the eye and assured him that it was nothing he did and nothing he could have prevented. He told him that they don't know the answer, but they are working on figuring out a treatment plan. He honestly answered that they are hopeful for some kidney recovery, but it is too early to tell, and that he would be on dialysis "for months" until they know if his kidneys will recover at all. He looked my way, questioning why Dad didn't seem to know this, so I filled him in.

"He doesn't really remember a lot from the first few days in here. Today it's all sinking in. He's starting to understand what's going on."

So the doctor started from the beginning, reminding Dad how sick he was when he came in, that he conquered the most urgent part of the battle, dialysis was working it's magic, and he'd be moved to a regular floor later that day. He encouraged him to rest and work hard with physical therapy in order to gain his strength back.

The ICU doctors came in, then infectious disease. The parade finally over, Dad lay back in the bed and dozed a bit. He woke up, made sure I was still there, then started laughing.

"What's funny, Dad?"

"You." His laughter turned to tears.

"What is it?"

He held his hands out about three feet apart, and his voice cracked. "You were this big. You just wanted to follow me around that day. You had to be right by my side, all day. Climbin' up my leg, hangin' on to me. You were this big."

I had no idea what he was talking about, and was utterly amazed at the words, how they rolled off his tongue, aphasia nonexistent. It was like a cloud of fog rolled away that morning, the way he was communicating with me. That or the three cups of coffee were downright magical in their restorative powers.

I marveled that my dad recalled a day decades ago when I was his little girl - toddling around him as he probably washed the car, mowed the grass, grilled some steaks on the Weber and sipped a Pabst Blue Ribbon. His priceless memory left me speechless, even if I don't remember the same day. It was golden.

He napped a bit more, then woke and glanced around the room. "Where is she?"

"She's on her way, Dad. About half an hour."

He looked down at his feet. I stood up, and pulled back the bedcovers to check some healing blisters from a recent bout of cellulitis - another item on the long list of issues that the ICU nurse referenced. "Wow. Your leg looks a lot better."

I looked up at his face, and he pointed down, back to his toes. Now not to get too descriptive, I will simply say that my dad's toes resemble primate claws. They are some of the nastiest things on earth, and we all joke about it. He started crying again. "She does that. She cuts them."

He was referencing the fact that my mother, in the sickness/worse side of the health/better equation of their marriage vows, actually soaks and cuts his toenails. I'm fairly certain that she doesn't enjoy this wifely task, but she does it anyway. And by the catch in his voice, I could tell how much he appreciates it. And loves her for it.

Finally, his bride entered the room.

He clutched her as she hovered over his bed. He kissed her over and over. She moved to sit down in the chair, but he wouldn't let go. He clung to her hand, and told her to sit on the bed.

"I love you." He rarely says that, since the stroke. He sometimes will when prompted by her first, but not this time. He did it all on his own.

There was so much love in that hospital room. The week held some of the scariest moments for my mom, as she realized how close she was to losing the love of her life. The man who can drive her crazy and frustrate the hell out of her and still hold her close and love her better than anyone. They taught me unconditional love, and they continue to teach me.

That night I called my big brother in California to relay the latest news. Finally able to let my own emotional shield down, tears of relief poured down my cheeks as I told him about the memories and the sentences that Dad effortlessly spoke. How he easily communicated better then he had in years, whether it was because we were alone in the room or his prior condition clouded his brain, I wasn't sure. I know it pained my brother to not be here and share in the family's heartache. He asked if I thought whether Dad could talk to him that way, too. I know he wants that. We all want a little slice of the past...just a moment of how it used to be. The dad we grew up with. The man who balanced out our tough loving mother, and let us slide. Who had strict standards on some things, but also showed us how to live it up.

My parents have a small group of friends who visit them regularly, still treating my dad as they did years ago. I am eternally grateful for those people, and for family members who flit into my parents' home. Fairy laundresses and house cleaners who sprinkle their glittery dust and leave her home in tip-top shape when she enters after a long day at the hospital. Bossy fairy godmothers who call daily to offer her a respite, commanding her to take care of herself. Magical sweethearts who teach her to quilt, offering her an escape and newfound passion to call her own.

Dad eventually moved upstairs that day, only to be thrown another bomb the following morning  - Medicare does not cover dialysis on an outpatient basis. More extreme hopelessness and heartache ensued until another sliver of hope arrived in the form of the Vetrans' Administration. VA supplemental insurance will cover dialysis for the next three months, leaving my parents relieved and grateful that Dad served our country in Viet Nam in the late '60s.

He is home now, and they are in mile one of an indefinitely long trek with dialysis three times per week. It's been a rough adjustment requiring a strict diet and other health concerns to manage, but they are making it work. Just when I think they're going to kill each other, one of them relents and all is right with the world again.
Happy camper thanks to a present from Mr. Musky. July 1977 edition of Playboy.
I know that my parents won't be here forever. I know that my time with them is limited. I strive to cherish every moment we have left with them, and I pray that they continue to lead as happy of a life as possible, as long as they can together, with more rays of sunshine than valleys of darkness.

They taught us well. That unconditional loving thing? It didn't stop with my brother and me.
It lives on in our own relationships with our spouses, in their grandchildren, in our friends they impacted over the years, and in their own lifelong friends who they continue to impress.

I love you, Mom and Dad. Stay tough and keep loving each other.

XOXO,
Jen








5 comments:

  1. So I am sitting at work with tears rolling down my face crying like a baby. I love you all and am beyond thankful for all your family has done for me. Your family has made me a better person and I am beyond fortunate that you wondered into my world. Love and hugs to all!

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  2. Love you back, girl. Love you back.

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  3. Crying like a baby person #2 here. Too many thoughts to share, so I'll just send you all lots of love. Praying for your dad, Jen (and mom too).

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    1. Thanks Cara. Thinking about you as well...all summer long. Those prayers of strength are powerful, so thanks for yours and feel mine back. XO.

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  4. Beautifully written. Be ever thankful that you had that time in the hospital with your dad and cherish whatever time you still have with him. Your writing made me think of getting to the ICU to see my mom but she was already in a coma. I'll be thinking of you and your family. xoxo

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