Along A Jetty - One Nurses Walk Through Parental Diagnosis And Death

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    Caravanning single file over a roughly hewn stone breakwater, mom, dad and I embark on a journey in my dreams.

    Unaffected by the waves slapping against the sides in a timeless hypnotic rhythm, we continue onward on some mysterious journey my mind has chosen to make me aware we must absolutely take. I am warm. I am content. I am happy. What I am NOT, is afraid.

    In serpentine-like slow motion, we follow dad into vignette shadows of dusk on a winding path atop the breakwater toward the setting Cape Cod sun. The air is clean and a light breeze kisses my neck as tepid wind whirls tumble past. I am acutely aware of the sea salt marshy scent, and the hauntingly comfortable sound of a far distant foghorn. The setting suns’ reflection tosses silvery pink orange shards of light our way.

    I remember as a little girl feeling so safe, warm and protected by daddy. All those things I feel in my dream. Strolling one behind the other, encompassed by the magnificent surroundings, I follow my parents along the jetty,

    We come to a full stop like ancient mariners surveying far away destinations. Dad turns to face my mother and me. He pauses briefly, meeting our eyes with his and then raises his hand in a silent wave. In this mind travel I am not confused; simply puzzled. Mom and I are now side by side. Dad mouths a silent goodbye. His beatific smile warms my heart and I am neither sad not surprised when he turns to continue onward toward the sunset. Mom and I clasp hands and watch him walk away until all we can see is the sweetly descending star flecked night sky. All I can think is that we will all be ok and he is safe. I love you dad. It is not the first time I have had a prophetic dream, but it is the most vivid.

    When I awoke I felt strangely peaceful. I couldn’t recall the last time I was so relaxed and stress free which is a lot to say for a busy mom and nurse. Often dreams fade to some long lost memory bank. Too many times, they are lost forever. For some reason I knew I would never lose this dream and immediately went downstairs to share the details with my husband.

    Not long afterward, my parents gathered the family together to share that dad had been diagnosed with a terminal illness. Though I had been a nurse for more than twenty years, I had never heard of the condition. All I knew for certain was that I hated it.

    Pulmonary fibrosis is an incurable lung disease of unknown etiology consisting of scarring of the lungs. Gradually air sacs in the lungs become replaced by fibrotic tissue. The tissue grows thicker as the scar surface increases, which causes an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream. Not a mainstream media illness, it interested me to note that one prominent sufferer of the malady is Jerry Lewis. Not much is known as to the why and how this debilitating disease occurs, but theories regarding possible autoimmune involvement or exposure via inhalation, to environmental or industrial pollutants are being currently considered. My father had been a life long military man who, following retirement, worked as a salesman at a jewelry store and then, for many years, for the US Post Office. I suspect his decade’s long habit of cigarette smoking must have figured into the equation although he had stopped smoking more than ten years prior to the diagnosis.

    Well, it was here and it was now, and I had to figure out how to deal with the looming monster of terminality. It didn’t strike me as a walk in the park.

    On our journey from life to death there have been some significant obstacles. Recently my husband, who suffered a heart attack several years ago at age 37 just after the birth of our first baby, spent nearly eight hours in pain before by some miraculous coincidence, I was compelled to go downstairs and check on him. We called my mom to watch our three children and sped to the hospital, where he was admitted. I was angry with him and that shocked me. How in the world could he wait so long to let me know of his discomfort considering his history? How could I be angry? Shouldn’t I feel relieved? How AM I supposed to feel these days?

    In the morning I drove home to spell mom and wait for my husband to complete his stress test. Thankfully, all was well. A false alarm is a wonderful thing. Just as I was piling the three kids into the car to pick up their dad, my mother called to inform me that dad was having difficulty breathing and refused to let her call an ambulance. Here it comes I thought; the first time we have to deal with tangible evidence that dad will not get better. Mom didn’t ask but I knew she wanted me to come over and check on him. I was immediately on my way.

    Dad was adamant. There was no damn way he was going to the hospital. Mom and my terrified brother didn’t want to upset him any further. His color was ashen gray and his breathing was labored. I noticed that talking elevated his respirations even more and he was gasping despite being connected to oxygen. Mom said the doctor was already waiting at the ER and it was a weekend so he had been called in from home. Big deal, I thought to myself. Who cares how inconvenienced the DOCTOR is? In a futile attempt to temper my daughter status with the nurse component, I failed miserably and burst into tears, fatigue and fear besting my professional demeanor. “Please dad,” “Please go to the hospital.” Knowing all about the fear factor and denial did not alter the fact that ultimately, I was still his little girl.

    Dad said he couldn’t possibly go without taking a shower. My brother attempted some levity by mentioning that all patients probably smell like old goats. Though he gave in on the shower, dad did insist that we find his special shirt, which included the names of all his children and grandchildren. Exhausted and upset form being awake after several grueling night shifts and a husband still at the hospital, I remember thinking “his orneriness” still possessed some vim and vigor. In the driveway supported by my brother and me, dad collapsed and asked for an ambulance. We picked him up and put him in the car where our amazingly strong mother was poised in the driver’s seat. That was the moment there was an actual almost palpable shift from parent to child. It was unnerving. It was also the first time I permitted myself to see the frailty and acknowledge the inevitable.

    The nurse in me took over as I designated my shell shocked brother to go with mom and dad to the hospital as the children and I followed. He resisted so I reminded him if God forbid something happened and mom had to pull over, I could go over to help out and he could watch my kids. It never occurred to me to linger on the thought that I might have to revive my father. Thank goodness for the automatic pilot thinking years of nursing impresses upon you.

    At the hospital the same group of admitting people and ER staff did a double take as I checked my husband out and checked my father in. There were jokes about family discounts. It was truly a surreal day all around.

    The most difficult part of the entire scenario is that is so hard to watch. The changes are insidious. There are good days and bad nights and vice versa. You think you are prepared and then there is a modicum of recovery. Relief is always tempered with fright. It seems a never-ending battle between subtle and obvious. The entire process is unforgiving.

    How can I have saved so many lives, continually participate in endless scenarios of life and death and STILL not be able to save my dad? Who the heck am I to even think I could? And how come I CAN’T? God, on that humorously poignant journey you have sent me on throughout my life, have you noticed I am no longer laughing?

    Ironically and thankfully, the only person in the family who is ok with the eventual outcome is dad. Lately amidst the emotional highs and lows that accompany me wherever I go, that fact is soothing.

    I can no longer watch the “Lion King” without silently cursing the song, “The Circle of Life.” It kind of cracks me up sometimes but it’s true. Currently I am not too thrilled with the damn circle of life. I hate that it just shows up at your door, breaks it down and knocks you on your butt.

    Yesterday while sitting on the beach basking in the crisp new spring sun, I could equate the panoramic view of the shore and ocean to the cavalcade of emotions I have been experiencing. Windy whitecaps, gently heaving swells, smooth banks of sand interspersed with trash-strewn spots. The sea tells stories in every lick of spray; the shore in every grain of sand.

    I catch myself looking at people who have recently lost a parent. I notice how they act and what they talk about. Sometimes I flash back to a time when my grandmother was confused and no longer recognized me. I remember how sad and lost I felt. Will that happen with MY dad? Will he forget who I am or how much I love him? Why am I the only one who gets teary without notice? AM I the only one? Or, am I just not as good as I used to be about it? Why why why? I hate to admit it but the real question on my mind is when when when? Sometimes in posing such questions I feel like the most selfish daughter in the world.

    When I think of my dad I don’t necessarily recall a pristine childhood. He could be a real pain in the neck. He was always there for me though, and still is, to the best of his ability. How in the world am I going to deal with visiting gramma without grampa? How am I going to tell my little ones what happens when the time comes? And to my oldest who is a beautiful, smart sweet young man fairly raised by grampa as a father figure, how am I going to help him through it when I am feeling so helpless myself? Will my babies remember grampa? Will I forget what he looks like? Will they? I can’t remember what MY grandfathers looked like unless I peruse a photograph.

    My six year old daughter tells me each star is a person who went to heaven. I think so too even though science tells me that can’t possibly be true. She tells me that she believes there are spirits up with God who some day travel back to Earth as babies. She is convinced that is why I am a maternity nurse; so I can help them find their families. She wonders if grampa will come back as a baby. Part of me shudders at the thought and thinks of the jokes he would make at that. Part of me secretly hopes it is true.

    Our five-year old son sees God, so he tells me. He thinks that grampa will be ok and just on the other side of the wind. I am told that we will be sad but we should also be happy that God loves grampa so much that He would take him back to Heaven. “Besides,” “we all will be together someday mom.” The three year old tells me that grampa, who has to walk with a cane and wear oxygen continuously, will be able to rock and roll in Heaven. Oh, if only that was true.

    I kiss the kids and ask the Angels to watch over them. I guess part of the reason I have done a decent job with them is because dad and mom have done a decent job raising me. It has been a totally bumpy ride with a couple of smooth spots along the way. I know the whole process is part of the life continuum and while I have to accept it, nowhere is it written that I have to like it.

    See, it IS about me. When my children are sick, I tell them the same thing he always told me. “I wish I could take all the hurt out of you and put it in me.” He would gently stroke my hair and temples while saying it and I always felt better. For the first time ever in my life, that is exactly what I want to say to him, and I can’t help.

    I am frightened that the best of my ability just isn’t good enough. Did I make him as proud of me as I always was of him? Will he always know that even though I am an adult I will forever be “his” little girl?

    I just wish I wasn’t so sad or angry. But, I suppose the ability to feel such a multitude of emotions is, despite the discomfort, a good thing. This is just the beginning of many phases.

    I have been thinking so hard and so long that I am totally exhausted. Sleep eludes me but I trust my dreams. I trust that dad is accepting of what is to come and that consoles me. Whatever the reason for my dream of the three of us calmly negotiating the jetty, it remains comforting to me that all was peaceful and calm.

    I am still not at all thrilled that the circle of life has spun us to the point we now find ourselves but I can surely say I am grateful for the spinning.

    Dad always made a point to tell us NOT to say goodbye in case we didn’t see each other again. That way there would never be goodbye. He felt it was too final. So long implies we will be together someday. Even though this time there will be a definitive farewell, I am reminded it is simply a transition from this world to the next. That said, so long for now dad. I will see you soon, and later down the line, in my dreams as you promised.

    By daughter and nurse Martha RN

    *Currently there are no effective treatments or a cure for Pulmonary Fibrosis and there are roughly five million people worldwide who are affected. In the US alone there are more than 200,000 known cases with more than 40,000 people dying annually. These statistics rival breast cancer in their numbers. According to the Pulmonary Fibrosis Foundation, typical patients are diagnosed in their forties and fifties. There are some medical treatments involving steroids and other experimental agents but both have limited success.
    Last edit by Joe V on Mar 3, '08
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