The Granddaughter Nurse: A Tale of Pancreatic Cancer [Update the.passing]

Thirty years ago, when my Papaw held me in his arms the first time, he never thought that three decades later, that little girl would be by his side day and night, caring for him in the last stages of pancreatic cancer.

As a nurse, I’ve cared for many people with cancer.  Children, babies, young adults, middle-aged adults and the elderly, I’ve cared for them all.  I’ve seen families deal with every kind of diagnosis imaginable and while it was always heart breaking, I always got to go home at the end of the day.  I always had a space, a buffer zone from the pain and sadness that accompanies the dying process.  Not this time.

While I am glad that I am the medical professional in my family that helps explain the medications, shows others how to lift my grandfather properly and instructs on things like foley catheter placement and breath sounds, it is difficult to do as the granddaughter to the patient himself.  Administering narcotic pain medications and sedatives to keep him comfortable also comes with a degree of guilt, knowing I’m keeping him in a sleepy state that doesn’t allow him to interact with his family members.  The alternative, not giving these medications, doesn’t lend to a comfortable existence and all we can do is sit and pray for either a miracle, or a peaceful passing.

With my medical background, I also scrutinize every action that his care team took in his journey.  There are so many things I wish were done differently.  With hindsight 20/20, I also remind myself that I couldn’t have known that the story would play out the way that it has.  Asking unlimited “what-if’s” of myself is only serving to intensify the grief and sadness I feel over a situation I had no control over.  These “what-if’s” are only useless torture at this point and asking God where His healing powers were in all of this would only weaken my already fragile faith.  The Bible says all we have to have is faith the size of a grain of mustard seed, and I reckon with God that surely, even though I don’t have much, I have to have that much.  But yet my Papaw lies in the rented hospital bed in the middle room of his own house, slowly dying.

I think I know too much and the knowledge in my head worsens the pain that I feel.  I spent two years in nursing school and only ended up working for five years before I quit to stay home and raise my kids.  Sometimes I wonder why I went through all the trouble of going to nursing school if my professional career was going to be so short-lived.  After this experience, I think perhaps I was called to be a nurse specifically to take care of my family.

December 1, 2011

When a person is in the final stage of their life, when sleep filled days control their existence and the knowledge of what is and what was is no longer possible, do they still dream?  If so, are these dreams filled with action packed memories of better, healthier days?  Adventures always wished for but never materialized?  Perhaps during this time, the individual is receiving an angelic orientation to the eternal life to come, getting a preview of the wonderful things in store.  That’s what I like to think is happening.  To soothe the pain of leaving loved ones behind, perhaps God allows a glimpse of heaven before one actually enters through the pearly gates.

 

December 2, 2011

I keep thinking I’m going to wake up, that this dream nightmare is going to end and my Papaw is going to come walking through the kitchen door saying, “Hello Amber!” or “Hello Hotshot!” (to Evan).  Perhaps I would see him driving his tractor down the road, headed to feed the cows, and then stop by my dad’s shop for a Mt. Dew and Lance cheese cracker break.  That’s what needs to happen.  My Papaw isn’t supposed to be lying in a hospital bed, in his own living room, waiting for the end.  This is completely ridiculous.

How did this even happen?  He had major surgery over the summer that was supposed to FIX this.  That is what we were told, and then he had chemo and radiation as “insurance”.  No one ever said pancreatic cancer, that was never mentioned…until the day before Thanksgiving and then everything changed.

 

December 4, 2011

One part of the grief process is anger.  I suppose that’s where I’m at.  Anger.  I’m mad at a whole bunch of things…

Mad at the surgeon for lying to us.

Mad at the fact that we’re going through this at Christmas.

Mad at the fact that we’re going through this AT ALL!

Mad that so many of my friends and family don’t say anything to me about this. There’s no, “I’m sorry” or “Let me know if I can do anything for you,” they say nothing at all, ignoring the situation AND me like it’s not even happening.

Mad that life has to go on, despite the fact that my Papaw is sleeping away with who knows what going on inside of his body.

I’m just mad.

Mad as hell.

December 4, 2011…a little later

I sit here in this house and occasionally forget why we are here. Life continues on, different yes, but the hustle and bustle is here, intermixed with tears. We walk by Papaw in his bed, asleep, talking to one another. Even sitting feet away and watching television makes me feel guilty.

I hate this.

December 5, 2011

I awoke at 1am this morning, thinking I heard Papaw making noises, thinking maybe Grandma was up with him.  When I got to his side, I realized that his breathing had changed.  It was a little quicker than it had been and with each expiration, he let out a little moan.  To me, he just seemed so very uncomfortable.  I spoke to him in a soft tone, but didn’t get any response.  That was the first time I’ve really felt scared.  I’m not prepared to deal with my Papaw passing in my presence, but I know that none of us are.  There just isn’t a way to prepare for that.  All of us just wish we could wake up and find out that all of this was just one horrible nightmare.  I guess that isn’t going to happen though.

As much as I didn’t want to bother him or sedate him any more than he already was, I gave him a dose of pain medication and something to help him relax.  Afterward, I pulled a chair up to his bedside and sat down, with a hand on his arm and my forehead resting on his bedrail, I began to cry.  And pray.  I reminded God of all the miracles Jesus performed in the Bible.  Although by medical standards, it’s too late, but by God’s, I know that it’s not.  If it wasn’t too late for Lazarus, it’s not too late for Papaw.

But yet I wonder, where is my faith in all this?

December 6, 2011

12/6/2011

There’s a book I like to read Evan called “Oh the Places You’ll Go” by Dr. Seuss.  In that book, one page talks about “the most useless place, the waiting place, for people just waiting.”

(I’ve read that book so many times I have a lot of it memorized, but at 5am, I may not get it quite right.)

“Waiting for a train to come or a bus to go, or the phone to ring, or the snow to snow, or waiting around for a yes or a no, everyone is just waiting….waiting for the fish to bite, or waiting for wind to fly a kite, or waiting around for Friday night, everyone is just waiting.”

That’s what we’re doing here.

Waiting.

And it is the most useless place.  There’s nothing we can do except make Papaw as comfortable as we can and pray.  Both of those actions feel so completely miniscule right not, especially since it feels like God hasn’t heard our prayers, and it’s getting harder to make Papaw look comfortable.  I just don’t know what to do anymore.

Hospice gave us a booklet about what to expect at the end.  I read it yesterday.  It lists symptoms that describe when the end might be weeks away, days away and hours away.  Many symptoms Papaw exhibits right now falls under the “hours” category, but he’s been like this for days.  He’s a strong man and a fighter, even when it seems that he doesn’t know who he is, where he is, or what’s going on.  He’s still fighting and hanging on.  I guess that’s a personality trait I got from him.

Last night we were looking at some scrapbooks that Ellen made for my grandparents a while back.  Both of them featured pictures of my grandparents in happier days.  My

favorite of all the pictures was one of my grandma kissing Papaw on the cheek, and Papaw looking just as happy as he pleased.  He had a sparkle in his eye that described perfectly the love that he felt for my grandma.  The picture, and many others, made me cry though.  It reminded me how much I had taken them for granted over the years, and even recently.  I wrongly assumed that I had 10+ more years with both of them.  I can’t tell you the weeks that went by that I didn’t visit, not even once.  Too wrapped up in my own world, rationalizing with myself that the kids had the sniffles or it was just too much trouble to drag them out of the house.  Oh, how I wish that I would have visited more.  Insisted upon Sunday afternoons fishing with Papaw and Evan, spending quality time with him instead of finding myself in the waiting place…waiting on the end to come, the tears to flow and the pain that will inevitably be felt when Papaw passes from this life to the next.

 

December 6, 2011….Evening

I just wanted to share something my husband posted on Facebook today.  Caring for Papaw isn’t a job that I do in search of praise, but it did warm my heart to know that my husband thinks so highly of me:

I am so proud of my wife. She is calling upon all of her training as an oncology nurse, and all of her strength as a woman, to be the primary care giver for her Grandfather. Not only does she continue to be a stay at home mom, which is already one of the hardest jobs on the planet, but she also serves as the live-in hospice nurse for an end stage cancer patient. Not only is this another one of the many cancer patients she has lovingly attended to, but this is a man that she has known and loved… all of her life. She has had to fight through her own pain, so that she can manage his. She is a rock for her family, and she is by Papaw’s side day and night. She awakens out of her sleep late at night, at the sound of every cough, wheeze, whimper, or rustling. She administers his medicines, nurtures him, bathes him, reads to him, and loves him. She cooked dinner for the family last night. Then, we were up at 3:30 this morning looking after him… and after she tended to his needs, she made me breakfast while I got ready for work. Sometimes I worry about her, because she is constantly sacrificing… and the support I try to provide for her seems so insignificant, compared to what she gives around the clock, on a daily basis. To say that this is a strong woman, is the biggest understatement I’ve ever made. All I can adequately say, is that I am extremely proud, to be able to call this woman my Wife. I love you Amber, and I love you Lester Monroe.

 

December 7, 2011

I feel lost.

My whole world turned upside down the day before Thanksgiving and I’ve been in a desperate race to catch my bearings ever since .  With one sentence, “The test showed cancer cells in Papaw’s abdominal fluid,” all hope was stolen away and we were left breathless, trying to figure out how the wool was pulled over our eyes.

Since Monday, November 28, Mike, the kids and I have spent one night in our own beds.  Every other night we’ve been here, by Papaw’s side…a mini-Canaan support system for Grandma, Aunt Pam, and anyone else who walks through that door.

I keep thinking of Evan, wondering how he’s handling all of this.  I know it doesn’t make any sense to him why we suddenly packed our things and basically moved into Papaw and Grandma’s house.  When we got the news about two weeks ago, I contemplated pulling Evan out of school for the month of December, unsure how I’d physically get him to school in the first place.  Then, in an effort to maintain some normalcy in his life, I decided it best to keep at least that part of his schedule the same and allow him to continue to go.  Thankfully, a couple of family members have stepped up to help out with the chore of chauffeuring him to and from preschool.  My cousin Jerry has been the biggest help, followed by my sister Sarah and her husband Pete.  About one night a week, Evan goes home with Sarah and Pete takes him to school the next morning, since they only live a few miles from his school in the first place.  From my grandparent’s house, the school is a good 20 miles or so away.

Still, I can’t help but wonder if he thinks something has happened and I don’t love him as much.  He was used to me taking him to school, picking him up and spending every minute of every day devoted to him and Lindy.  Now, other people assumed the job of school transportation and my attention is divided even further while caring for Papaw and helping around Grandma’s house.  I hope he’s ok…my sweet little Evan.  He may not understand what is going on, or what is happening to Papaw, but he and his sister are certainly bright spots in my life and I’m so blessed to have them here with me, through all this.  They always manage to make me smile, even when all I want to do is cry.

The Passing [December 8, 2011 ~ 8am]

I’ve had the hardest time trying to process my feelings of the last couple of days, deciding where to start writing to express everything going on inside my heart and mind.  I haven’t come to any conclusions on the best place to start, or how to put any of this into words, so I’m just going to start writing and hope that it all makes sense, but I make no promises.

On Thursday morning, December 8, 2011, I woke up around 5:30am to fix my husband breakfast before he left for work.  We were still at my grandma’s house so I was very quiet so not to disturb my aunt who was sleeping in the living room on an inflatable air mattress.  My first stop, as it was every time I got out of bed or went anywhere in the house really, was my Papaw’s hospital bed, positioned in the room that adjoined the kitchen and the second living room.  He was sleeping, taking very quick and shallow breaths.  I kissed him on the forehead and told him I loved him, an act that I’d done many times a day over the preceding two weeks.  I noticed though that his color was different.  His skin tone was gray, an ominous sign that the end was near.

After cooking my husband breakfast and kissing him as he walked out the door, I looked in on my Papaw one more time, and went back to bed with an ice pack on my head because my head ached.  I wasn’t sleeping well at my grandma’s house and the couple of hours between the time my husband went to work and when my children woke up were the most restful for me.  I usually gave my Papaw a dose of pain medicine before I went back to bed, but that morning he seemed comfortable, so I didn’t bother.  I didn’t want him to be over sedated in case he wanted to wake up and say goodbye.

About two hours later, I awoke to a loud cry/shriek and I knew what happened.  Sometime around 8am, my Papaw went to heaven.  He fought the cancer as long as he could, days longer than the hospice nurse or I thought possible.  The telephone woke my aunt that morning, and when she got up, she was the one that found Papaw first.  I had hoped all along that it would be me.  I wanted to spare my aunt and grandma the pain of being the one to find him.  Unfortunately, it didn’t work like that.

When you hear that someone is under hospice care at home, I think the assumption is that when the time comes, the person will be surrounded by loved ones and depart peacefully from this earth.  The truth is, the dying person often decides to do things their own way.  The hospice booklet we were given noted that if a person was really independent and strong willed during their healthy days, they may not want to burden their loved ones by passing in their presence.  I knew that my Papaw would be one of these.  I prepared my grandma, aunt and husband for this possibility, telling them that if we awoke one morning to discover he had passed, not to beat themselves up that he was alone in the end, but realize Papaw wanted it that way.

When I heard my aunt crying, I jumped out of the bed and ran to my Papaw’s bedside.  He looked so peaceful.  After two weeks of suffering, I was finally glad to know he was in a better place.  The main reason I rushed in there though was because I didn’t know what might have occurred when death came, and I wanted to clean him up and keep my grandma from seeing anything that might stick in her mind.  My grandpa had vomited a little, which I quickly covered to protect my grandmother.  I don’t think he really vomited, I think it was just a reflex or something that happened after he was gone, but still, I didn’t want grandma or anyone else to think he suffered, because with the baby monitor I had set up, I heard every sound, snore, movement and moan that he made over those two weeks.  I didn’t hear any retching that morning.

I stood there watching him, thinking he would take a breath sooner or later, but he never did.  I put my arms around Grandma, who was standing beside him crying.  She leaned over the side rail and kissed him on the head.  I can’t imagine how she felt at that moment.  She told me she was ok, to go check on my aunt.  I went to find her and hugged her, completely overwhelmed at what was going on, and what I experienced over the previous days.

I ran to pick up the telephone and I called my dad, and tearfully told him that Papaw was gone.  Next, I called my husband and told him I was sorry I had to tell him this over the phone, but that Papaw was in heaven.  Mike left work immediately and rushed home to be by my side.  I called hospice next, informing them of the death and then called my sisters Ellen and Sarah.  Ellen called Hannah and on the phone tree went.

As I was on the phone with my Sarah, I realized that my children were asleep in their bedroom and I would have to explain to Evan why Papaw wasn’t breathing anymore.  He’s only four years old, but he’s a really smart and observant kid, surely he would notice.  At that thought, I’m not sure if I experienced a panic attack, or started to hyperventilate.  Maybe it’s the same thing.  Either way, I couldn’t catch my breath, couldn’t speak, couldn’t do anything but gasp for air and completely freak out.  Explaining death was one thing, but showing my son my grandfather’s dead body, in the same house he slept all night in, that was just more than I could handle…

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