Friday, 11 October 2013

Knee deep in.... grief?!




Not 24 hours after the passing of my father, a stomach virus hit our house.  It was like it was Dads parting gift.  I remember blabbing at him on the phone one day about how I had a 4 year old who had never thrown up - like it was some magical power only I possessed.  Well.  At 10 pm the night after he passed, just as grief was about to hit me hard, we heard a noise over the baby monitor.  In my room (the baby was asleep in my arms downstairs but this was when we had her in our room - sleeping alone for half of the night and then the last half of the night with us).  IN MY ROOM AND THE BABY WAS WITH ME. 

What.  The.  Eff.  

Sean and I looked at each other quizzically and looked at the ceiling as though our super parent special powers would enable us to see through a few inches of wood, wires, and drywall.

Then we raced upstairs.

My poor sweet almost 5 year old (who is mildly autistic) had come into my room to sit in the rocking chair - a comfort mechanism that worked for her when she was over stimulated.  Except this time the stimulation was not in her brain - it was in her stomach and about to be all over Sean, the floor, the chair and *gasp* MY BED.  


Shit.  Shit shit shit shit. 

I am very much a germaphobe and to go through THIS right after losing my father, almost made ME lose it.  And then, in the midst of cleaning a mess that would have made Linda Blair jealous, I started laughing.  And then Sean started laughing (although looking back, I think he was probably thinking "she has lost it, laugh with her or she will snap").  I looked at him once we got Ariana settled in the bathroom and I was scrubbing my carpet and said "You know, Dad is probably sitting over there in the dry spot, just laughing his ass off at me saying "Now you understand".

Since Dads passing we have survived 3 head colds, 4 flu viruses, norovirus and 
c-difficile(which is what we had for the week after Dad passed.)   We survived.  

And yeah Dad.  I did understand.  I really really did.  And I am still laughing. 

A man decides to rest.




I am sitting here tonight, not sad, not happy, just with a quiet contemplation and melancholy.  When I started writing about my journey with my father at the end of his life, I dreaded writing this post.  Nearly 5 months have gone by since that night, and while the pain is still there (the kind that sneaks up quietly at times when all seems well - and takes you over for a while and brings tears to your eyes while for some reason there is still a small smile on your lips), it is not as gut wrenching as it was when it first happened.  In many ways, the days leading up until his passing were more painful - that shot to the solar plexus of pain.  Now, I am able to look back and feel a sense of peace - and I can honestly say that I have no regrets.  I am sure my father would say the same thing.  His life, while having its ups and downs, ended in a peaceful, loving, quiet and calm manner.  His visit earth side was one hell of a ride, however his next step in the journey was quiet.  As it should be.  This post is about that last day with him.  While it will be hard to write at times, and will be difficult to read (especially for those who have lost a major contributor to their life), it is needed.  It is the end of my fathers physical story.

As on other mornings, I woke up and the first thought was going to the hospital to see Dad.  I called around to see if I could get a ride in, as it was rainy and I really did not want to have to rely on public transit.  My friend and neighbour offered to give me a lift in.  I was grateful as I had had to lean on her a few times during the past week, and she did it selflessly.  If she ends up reading this, she will know who she is and I am eternally grateful for her support and help.

Before I left for the hospital, I called the palliative ward.  I wanted an update, pure and simple.  The doctor in charge that day (it was a holiday Monday - the day after Remembrance Day here) and I asked if Dad was still on an IV.  He replied no that I had to accept that my father was dying.  I asked how long he figured Dad had.  He was a little moody and would not pin point a time period until I repeatedly asked.  He finally said 3 - 5 days left.  I was disgusted thinking that my father would be slowly starving or thirsty.  I told him I wanted an IV put back in (I did not realise then that stages of dying include the fact that the body does not need food or fluid) and he said he could not, but he could put two small tubes in his upper arms for saline to go to his muscles where it would be absorbed into his body.  It was better then nothing to be honest, so I was grateful for that.

We got up to the hospital and I walked in, said hi to Dad, spoke with him for a few minutes and then went to make a few phone calls - family, friends, anyone who would want to know that Dad was indeed in his last stage of life.  Not many people answered family-wise, but I left messages.  A few of his friends answered (you know who you are) and I spoke to them, informing them of what was going on.  One of his friends, a really nice guy who I had never met, told me he would come up and see Dad.  I waited around, going from Dads room to the quiet room next door to drink tea and back again.  I noticed while in the quiet room that it faced the room that I birthed my youngest daughter.  I remember being in that room, holding a tiny newborn, looking out the window and seeing a beautiful room with flowers and plants.  I wondered what that room was, thinking it was some doctors lounge or something, however it would end up being the room I collected my thoughts while my father laid dying.  It was strange yet comforting.

Dads friend got to the hospital to spend time with him, and I could tell it hit him hard.  Dad looked like he was at the end of his life.  His vibrancy was muted, his large personality was not as large.  It was hard enough for ME to see, let alone someone who had last seen him doing relatively well.  My heart broke for this man, as he truly looked up to my Dad, and cared.

He hung around for a little bit, he had brought with him a magazine for Dad (which I thought was very thoughtful - it was the 100 Year History of the Grey Cup *Superbowl Canadian style*) and we chatted to each other and to Dad.  At this point Dad was getting quite restless and appeared to be cold - so I brought the blanket up higher and tucked him in.  I walked Dads friend down and said my goodbyes and thanked him again for coming in.

I stood outside for a bit, called my good friend K and asked if she could come pick me up at around 9.  She said sure.  I went back up to Dads room and he was very restless.  I asked the nurse if he could have something for pain and she said he could have it on demand.  She came in with another nurse, they got Dad comfortable on the bed and gave him two injections.  He calmed down pretty much right away.  After they left a song came on the radio - Enya Only Time.  This song meant something to me because I remember hearing it years before while Dad lay in the ER after a mild heart attack.  I was so scared that night even though I knew he would be fine.  Hearing it again on this night, it was a sign to me.  Tonight was the night.  I knew it in my soul.  I crawled back up on the bed beside him and asked him if he was ready to go, he shook his head again rapidly.  I then asked him "Daddy, are you ready to rest?  Because if you are, I understand and I am okay with that.  I love you Daddy and you have fought hard.  If you need to rest, please, rest."

That was the single hardest thing I have ever had to say because in essence, I was giving him the okay and telling him I was letting him go.  



                         





I called the girls to say goodnight, and sang my songs to Ariana over the phone (You are my sunshine, Twinkle Twinkle little Star and a goodnight puppy song she likes) and then put the phone to his ear.  She said goodnight Grandpa, I love you.  Goodbye.

I then put Sean on the phone and later found out that he told my Dad that it was okay if he was ready to rest, that he would take care of his girls for him.

I then hung up the phone with the girls and Sean and spent a while with Dad.  I realised his breathing was becoming irregular, and that he did not want me to witness his last breath.  I said that I understood that he was ready to rest and that I would go home to be with the girls and Sean, but I would be back when it was time or shortly thereafter.  I played a video I had taken of Ariana singing "I have peace and love" for her Remembrance Day school concert (I had taken a private video of just her sweet voice singing it at home).

I cried, I wept, I hugged him and I kissed him goodbye. 




Saying goodbye to my father and telling him it is okay to rest.


I remember slowly walking out of the room, and to the elevator, where the tears came in a flood.  I slowly walked out of the hospital to the parking lot where K was waiting for me.  She saw me coming, and I could tell by the look on her face that she could see my tears through the rain.  I got in her car and just sobbed on her shoulder.  I told her it was tonight.  I just knew it.  We started talking about Dad.  About the stories he told me while I was growing up.  About being a little boy climbing a totem pole.  About blowing up army men in his backyard with firecrackers when he was 8 years old.  We sat in that parking lot, talking, laughing, crying, smoking and drawing strength from each other.  Finally, after an hour, she took me home.  I walked in the door and told Sean I had to check on my babies.  When I walked into Ariana's room at 10 pm that night, the smell of my dads hospital room and his gum was permeating the room.  I nursed the baby for a few minutes and then came down stairs.  At 11:13 pm I started getting a heavy feeling on my chest, my heart hurt and it was difficult to breath.  I called the nurse and she said he was still the same, but she would go check because sometimes families just knew.

I waited for what seemed and eternity, and finally heard her coming back - but she was running.  She grabbed the phone up and said breathlessly that his breathing was quite irregular and I needed to come back.  I hung up and called K because Sean needed to be with the girls in case they woke up.  K showed up at my front door about 5 minutes later (breaking the speed limit but what the hell ) and we were off.  We were going VERY fast, passing two cop cars that did not seem to see us.  It wasn't until we were about 8 blocks from the hospital that all of the sudden we hit EVERY SINGLE RED LIGHT.

We finally got to the hospital, K getting out to pay and then we raced for the ER entrance, me running ahead.  I yelled to security that I had to get to palliative and he hit the button to get me to the elevators.  The very same elevator that I had mentioned in a previous post (the one that would go up and down and not open the doors until I said "Dad cut it out") was standing open.  There was no one around.  The lights in the elevator were dimmed.  K and I looked at each other and went up to the third floor.  I got out of the elevator and flat out RAN.  I ran past the nurses station (the nurses saw me as I went past and rushed to get up to get to Dads room) and I entered my fathers room.

My father had passed away 10 minutes before I got there.  I remember yelling "Oh Daddy..." (however I later found out I whispered it) and I collapsed.  The nurse and K held me up and then I noticed a song on the radio had just started it.  The song was:

                         


I ran around the side of the bed and turned it up LOUD.  I sang it to my father, my tears streaming down, and held him, kissed him.  I held his hands.  His hands that were once so rough and tough and large.  Hands that held mine through so many years.  Hands that protected, and hurt.  Hands that told so many stories.  They seemed so small in mine.

I noticed once everyone left the room that my Dad had passed while looking at a picture of my girls.  That he had not been alone - both nurses were with him when he passed.  That he simply took a deep breath in and that was it.  That was the end of his time earth side.

Daddy, although you are not around to read this, I hope I did you proud with what I have written.  You have done me proud.  I will carry you in my heart for all time, and I know that you are around, watching over us and guiding me.  I will make you proud Dad.  I meet you on the other side, decades from now.  And what a conversation that will be.


Something I wrote on Face book the moment I got home:


Tonight, at 11:15 pm, a man allowed himself to rest. He fought a hard fight, lived an amazing life, and loved purely. Dad, I will carry a piece of you in my heart forever. I am so honoured to have been able to be with you through this process, just you and I. I am so blessed to have been able to kiss you goodbye shortly after you took your last breath. You are not gone, but you are at peace. I am lifting a drink in your honour. 
 

You did good. I love you.
 


Warren Hardman May 19 1951 - November 12 2012.



Being the Daughter


 To a father growing old nothing is dearer than a daughter.   Euripides

My Dad and I 






My Dad with one of the loves of his life, Ariana



I have been doing a lot of thinking of how I wanted to write out this blog entry, because you see, it is not just a 'blog entry' to me.  This is a raw, emotional, loving, saddening, yet empowering experience in my life, and I want to do it justice.  I want to do it in a respectful manner, because this is not about just me.  It is the beginning of the end of one mans story, the end of his journey earth side.  This is my fathers story and I am simply the storyteller.  I was simply the witness to the end of his physical life, and what an honour that was. 

I did not know how to start this out.  Do I just jump right in from the last post, sort of a 'continuing the story' or should this be a separate entity.  I chose to slightly separate it, hence the title.  This is the part of his story where the fighting was ending, the true honest love was shown and dignity was claimed.

I woke up on a rainy day - and accepted that my fathers time was coming near.  I called the hospital and was informed that my dad was still awaiting a room up in palliative care.  His own room.  I told the desk clerk to inform his nurse that I would be up in a little bit, with the kids.  I made the decision to take the kids the night before, after talking it over with Sean.  How would Ariana handle it.  He was not able to speak, and was not always opening his eyes... would she be okay with this?  I figured that the baby would be fine, as she was not even one yet.  On our way up to the hospital (as we were about to turn into the parking lot a song came on the radio - a song that Dad and I both enjoyed - even though it was quite cheesy.  I made Sean wait until the song was over before I would allow him to turn the engine off).






We finally made it up to see him, and ran into some friends of his from work, one of which was in town by chance.  I was glad to finally meet her, and see the other people there.  It meant a lot to me that people were visiting him.

I went into his room before the girls and Sean and I am so glad I did.  I realised that he was tied down again by his wrists.  I looked at him and said loudly "What the hell is THIS shit Dad?!  Give me a minute and I will get you untied".  He opened his eyes just a little and I saw a shadow of a smile.  I stormed out of the room past Sean and right up to the desk clerk, demanding to see his nurse (I must have made a real sight those days in the hospital, my funky hair, dark jeans and my LOUD 4 inch heeled boots.  I wore those boots when dad was put into the chemically induced coma, because I knew he could hear me, however I digress.).  The clerk kind of stuttered that she was at the other end of the hall near his room.  I looked down the hall saw her and started walking furiously towards her.  I remember DEMANDING not asking that she untie my father NOW that he deserved dignity and I would not even treat a dog that way.  Needless to say, either my voice, demeanour or both had her in that room really quick with another nurse (I like to think it was the boots).  They explained that it was because he was trying to pull at the dialysis tubes - I pointedly asked if he was going back on dialysis to which she replied "No."  so I snapped "Then take them out dammit and untie him".  I left the room and 5 minutes later they came out.  He was untied and the tubes were out (bandage in place) and he looked so much more peaceful.  The best part was, the only tube he had was the nose cannula for oxygen and a simple IV.

I brought the girls and Sean and and Larissa immediately started babbling away to him, smiling and bouncing in her daddies arms.  Ariana walked over slowly and said "Hi Grandpa".  She was nervous but so well spoken.  She had drawn him a picture so she put it on his bed.  I looked over and saw that his eyes were open and he had one little tear in one.

While we were there, we were informed a private room in palliative had opened up and they were moving dad in the next few minutes.  We decided to go with dad in the elevator as a family.  On the way up, Ariana was talking away, Larissa was cooing and smiling.

Once we got Dad settled in his room, I plugged in a radio I had brought from home.  My Dad loves music, as do I and a lot of my memories of him involve music.  There are many songs I hear and I think "I remember when Dad and I did/went/saw etc".  I knew he needed music in his room.  I checked his TV and saw that he had cable, so I put the NFL game on mute and turned the music up just a little.  The girls stayed for a while but Sean had to get them home for dinner and bedtime routines.  Ariana did not want to say goodbye, she said she was scared to say it.  I told her to just tell Grandpa what she wanted to say.  She told him she loved him and would visit again.  It was hard.

Then I was alone with Dad.  I looked at the darkening window, listening to the rain lightly hit and watching how the drops made the street lights shimmer.  His room faced a park, and no one was outside on this night.  I noticed movement on Dads bed, and I looked over to see him raising his arms, elbows bent, to his chest and then down again.  He did this quite a few times.  I stood up and asked him if he wanted to roll over.  He did not give me a clue to a yes or a no and then I told him I was going to go step outside for a minute, that I would be here for a while so it would only be minutes that I would be gone.  I bent over to kiss his cheek, which is when I noticed his face.  He was crying.  He was outright sobbing and he clung to my scarf.  His eyes were closed, and he could not speak but he was making some gut wrenching sounds of sadness.  He continued to try to lift his arms and I realised that he was trying to hug me.  He was trying to hold me and he needed to be held.  I went to the other side of the bed and laid down next to him and started to cry softly.  I asked him "Daddy are you ready to go?  Are you done fighting?"  And he shook his head.

He shook his head no.

I kissed his cheek and said simply said "Okay Daddy, then I will fight with you" and I laid my head down on his chest, with his arms around me, and sobbed.  I wept.  He wept.  I cried like a little girl on her daddies chest because in that moment I was that little girl.  I was not a mother, I was not a friend, I was not a spouse.  I was a little girl with her daddy and it felt SO GOOD.  We must have cried together for almost half an hour.  I released so much stress, pain, free with those tears and all that entered my mind were the good times.  The random car trips with my Dad.  Listening to Bon Jovi while driving fast on the highway to wherever we decided to go that day.  To sitting at the beach on a rainy afternoon in the car with my Dad while he smoked cigarettes and gave me his wisdom while listening to my little kid complaints.  Of shoulder rides to the ice cream place, of drawing pictures of Disney characters.  So many wonderful memories just came flooding in and while I cried and laid there feeling protected by my DAD, I allowed myself to finally just be the daughter.  And damn it felt good.  I did not think of hospitals and tests and that fucking horrible word that no one wants to hear.  I did not think of how I had been scared and felt alone, I thought of how LUCKY I was to have had my Dad ALL to myself.  





        
My Dad and my firstborn, Ariana.  This is the picture she keeps at her bedside.


After the tears fell, and he relaxed, I had him open his eyes.  He looked right into mine and I asked again (in a much calmer tone) "Are you sure you are not ready to go, to stop fighting" and he looked for a few minutes and shook his head.  I smiled at him and told him that I would not give up either then.  I then went for my little air break.

When I got back, I sat with Dad, talking until he got his meds to help him fall asleep for the night.  I asked the nurses to please help me roll him on his side, and that could they please make him more comfortable so he could get the first good sleep without being hooked up to all kinds of machines.  They smiled and went to task.  I left the hospital that night, at peace because I knew he would be there the next day, and because of how comfortable he looked that night as I said goodnight and went home to my babies and man.  



                                        
My Dad.  Finally comfortable.



                              


This is the toughest thing I have ever written. And it will only get tougher.

On Saturday November 10th, 2012 I made the decision that was the most difficult yet selfless decision of my life so far.  Before I get to that however, I want to remember that day and the two that followed with perfect clarity.  This is the post I did not want to write.   This is the post about how I made the choice to take my father, a man I loved and love with my entire being.  The man who, while he screwed up a few times in life, deserved perfect dignity and respect in his passing.  This is the post about the final three days of my father, Warren Hardman's life. 

I woke up that morning feeling a strength in myself that I had not felt ever.  The night before when I got home from my seeing my Dad, I collapsed.  Literally.  One minute I was fine, the next I was on the floor, hunched over, sobbing in a way that I have never sobbed.  An animalistic primal scream tore out of my throat.  I was mad.  I was scared.  I was helpless.  I remember Sean holding me while I curled up in foetal position on the floor of my living room, my good friend K sitting on the couch with tears in her eyes while she held my youngest child, a child who would never remember her Grandfather except through stories we can pass down.  And my God, we will pass those stories on.

However I digress.  That day I was preparing to go in to the hospital, knowing the time would come where I would have to decide whether to keep him on life support or take him off.

Stage 4 cancer.  Stage 4 FUCKING cancer.  I still shake my head at that, nearly 4 months later.  
As luck would have it, I had gotten a hold of a friend of my Dads, a woman that he had worked with and spoke highly of (she was one the Dream Team of VOL, a phrase that brings a smile to my face.  He would have agreed.) and she just happened to be in town that weekend.  She was going to try to make it up to see Dad which made me happy.

K picked me up in the late morning/early afternoon.  She was going to come in and see Dad, as she had seen him when he was still talking in hospital.  She was my pillar (and of course Sean, the love of my life was my rock) and she really got a kick out of my Dad.  He was a flirt.  He was a story teller.  They liked each other right away.  She took me down to the hospital where I was informed that we would need to have a family meeting with the head of ICU.  I don't remember if I asked K to stay for that or if she volunteered, either way, she was there.  It was her, myself, the doctor (who we nicknamed Dr. Hottie - seriously this guy should have been on TV, not at the local ICU) and a nurse.  I remember the Doctor coming in and introducing himself to us.  He told me he was from Alberta and he was not going to bullshit me - to which I immediately liked and trusted.  He asked me about my Dad.  Who is he.  I said he was a smoker, a drinker, a gambler, a bullshitter and a ladies man.  He smiled and said "so basically your Dad has led a full life".  Put in those terms, yes he has.  He asked me if my father would be happy hooked up to tubes, to which I replied that he enjoyed going for drives, he loved working, he liked playing with his grandchildren and going out for burgers with us.  He said then basically it is a case of keeping him hooked up to the machines or giving him dignity before death.

Dignity before death.  No.  Just, no. Don't go there Doc.
I remember asking a few different ways if we could bring Dad home, if he would be alive for Christmas.  He gently replied that my Dad had cancer of the immune system, that chemo would kill him within a few hours.  That his kidneys were all but failed.  His heart had already tried to stop twice, once on the day he was brought in, once on the third day he was in hospital.  Dialysis did not work.  Nothing worked.  And nothing would work.  Then he gave the news that all but paralysed me.

My Dad was given 3 - 5 days of life.  

I remember staring at the wall.  I remember thinking no. no. no.  I remember seeing K in tears beside me. I remember imagining tearing the shit out of that room, throwing chairs through walls, screaming like a lunatic.

But I just sat there.  This could not be real.  He went in with pneumonia.   This should have been treatable!  I should be giving him shit over the phone about taking care of himself. I should not be listening to his death sentence.

I was then told he may not survive the tubes being removed.  I asked if I could be in the room when they removed the tubes.  I wanted to be there.  The doctor said of course I could, however I may not want to watch.  They gave me a time of 2:15 pm for removal of tubes.

K had to leave after a while.  She hugged me tight and told me she would see me later.   As I sat in the sun on that cold day, I panicked.  I realised I needed Sean to be there.  If my Dad died when they took the tubes out, I could not be alone.  I frantically called him, then I called my neighbour and asked if she could please, please watch my girls.  I was almost insane with panic.

I went up to the 'quiet' room to wait for Sean.  When I went in there, a rather LARGE East Asian family was in there.  There had to be 20 people.  One of the men saw my face as I sat there crying.  He asked if wanted water.  I replied no, that I was okay.  He asked me which loved one of mine was in the ICU.  I replied my father and then choked out a small voice and said "we are pulling him off of life support and I am waiting for my husband".  He asked if I had brothers or sisters and I said no.  His family cleared out while he spoke to me and he took both of my hands in his and said his father was also in ICU, and he just received news that his fathers cancer had not spread - and that he would pray for my father.  His kindness will not be forgotten.  You begin to feel a kinship to other family members in an ICU quiet room.  You are all hearing the worst news of your life, so when a family gets a reprieve, you are happy for them.  You want the same news, but you are still happy for them.

Sean appeared out of a sea of people and it was all I could do to walk to him.  I just held him and cried.  He held me.  He had tears in his eyes.  I took a step back after a few seconds, looked him in the eyes, took a deep breath and said "lets do this".  I held my head up high and hit the call button to get into ICU.  Sean had not seen my Dad since the day we signed the Living Will.  I had to warn him that the sight of Dad would shock him.  He nodded.

We both scrubbed in and put the gowns on.  Sean put some gloves on as did I, and we shared another look.  Then we walked into Dads room.  I walked over to his bed and in my customary form, said "Hi Dad, how you doin'?  Sean is here"  Sean just simply said "Hey Dad".

I am not going to lie.  This is the tough part.  I have been sitting here for 10 minutes with tears rolling down my face, taking deep breaths and willing myself to type this out.

I started speaking sternly to Dad.  I will paraphrase what I said because to be honest, it is a bit of a blur.  I basically said "Open your eyes Dad.  Open your eyes and look at me".  I held next to my face a picture of my girls.  I said "Dad, you NEED to look at me.  You want these fucking tubes out?  I will have them take these goddamn tubes out RIGHT FUCKING NOW!"  He raised his eyebrows, opened his beautiful eyes and looked right into mine.  Right into my soul.  He lifted his leg as though to get out of the bed. I was practically yelling at this point "Dad FIGHT!  We are freeing you from these tubes NOW!!!!!!!!"  I have never felt such a power go through my body before.  He was THERE.  He was NOT dead yet!  He was working with me. 

The picture I held when my Dad opened his eyes.  2 of his 3 girls.

The nurses and doctor came in to remove the tubes.  I sat in the chair at the foot of his bed, with Sean kneeling in front of me.  He held my hand so tight and I remember praying.  I prayed to God, to my grandfather, to my guardian spirits to get my dad through this and give me more time with him.  I am not religious but in that moment, I was.

I heard the tubes come out and then I heard him take a big breath and sigh.  It was the BEST sound in the world.  I raised my tear filled face and asked if he was okay.  The nurses and doctor were not able to speak, there was not a dry eye in the room.  Then one of them said with a smile in her eyes "You father is fine".  I looked at him and he looked so relaxed.  I was overjoyed.  I could see his face again.  They then untied his hands (he had been trying to pull the tubes out while he was in the chemical coma).  He was FREE.

Sean eventually had to go home to be with the girls.  K came back up to see me and we sat with Dad.  At one point I was leaning over him being a smart ass ( I was so freaking happy to see him so relaxed) and he elbowed me in the head, which cracked both K and I up.  I asked if he wanted me to shut up and he dropped his elbow.

At one point, K and I went outside for some air and a smoke.  Yes, I was smoking during this.  Judge if you want, I don't give a shit.  We went to go back up to see Dad (I had my customary gum, hand sanitiser etc).  We got into the elevator and something very very strange happened.  To explain it I need to give a bit of a back story first.

Every time I got into an elevator with my Dad, as a kid and as an adult, he would joke about what I would do if the doors didn't open.  I would shoot him a dirty look as I am not a fan of elevators.

Anyhow, we got in to the elevator, the same one I had used the entire week and I hit the button for the second floor (ICU).  It went up to the second floor and then back to the first.  Then the second. Then the first.  The doors would NOT OPEN.  Finally I looked at K and then the ceiling and said "Okay Dad, cut it out".  The doors opened on the first floor.  We looked at each other and with nervous laughter quickly got out and got on a different one.  The rest of the day, the elevator that was wonky for us worked for everyone else.  When we got back in Dads room I smiled at him and said "That was you, wasn't it".

K took some pictures of us that evening, and for that I am grateful.  I treasure them.

Before I left to go home that night, I was told Dad would be moved into a ward until they could get him palliative.  The Doctor (head of ICU, Dr Hottie) was going off shift and I ran into him in the hall.  He was on his cell to his wife talking about his daughter.  He got off of the phone and told me to demand that my dad get a private room, that my father should not die in public and if need be, mention the media.  I thanked him for what he had done for my dad, and that if he could do me one more favour.  He said sure, what can I do?  I told him "Hug your daughter extra hard for me tonight.  You have no idea what you mean to her.".


I went home with peace of mind that my dad had survived today and would be around tomorrow.



My Dad, finally off of life support.
Holding my Dads hand.



I’ll be your keeper for life as your guardian

I’ll be your warrior of care your first warden

I’ll be your angel on call, I’ll be on demand

The greatest honor of all, as your guardian

6th, 7th and 8th day ..... the progression to what will be the end


Day 6

Before going up to see my dad that morning, a sunny crisp fall morning, I went to see our family GP, who had been my doctor as well as my parents doctor for almost 30 years.  I went into his office with a copy of the living will that my dad had signed and let them photocopy it to put into his chart.  Then I sat down with the Doctor who I will refer to as Dr. G.  Dr. G sat down with me and listened to my concerns and after checking the paperwork began to open up to me about my dad.  I asked if he had cancer, Dr. G said no, not that they had ever found.  He informed me that if my dad can beat this pneumonia and have his kidneys come back to full function, he should live another 20 years.  I felt pretty good about that to be honest. 
I went back up to the hospital by myself, expecting to see Dad the way he was the night before.  I got to ICU, scrubbed and then saw that his glass sliding door to his room was shut, the lights were dim and there were warnings up to wear gloves, eye protection, a hair cap and a gown.  I was a little shocked by that, but I did what I had to do.  The biggest shock of my life came when I went in and saw even MORE tubes in and out of him, and the dialysis machine.  If you have never seen one being used, they are kind of cool but also very very creepy.  I just stared at everything.  The nurses were great in ICU however, taking time to explain things to me, telling me to talk to him, that he probably could hear me etc.  I talked about mundane things, the whole time my eyes wandered over to the hulking machine that was cleaning his blood.  I will admit, I could only stay in the room for a few minutes at a time, because it was so very overwhelming.  I made phone calls to people, updating every time I left the room.  I was not sure if he was going to make it, but I still had this insane hope that he would. 

I spoke with a doctor who was monitoring his breathing tube, and he showed me how my dad was doing 94% of his OWN breathing!  94%!!!  That is NOT a chintzy number.  I was almost elated at that point.  I knew then that I had done a good thing by putting him on life support - hell if this was happening, maybe we can take him off soon and he will eventually COME HOME!!!  The doctor told me that Dad had some tests for the following day, including a CAT scan, and provided they could bring him out of sedation enough to do the CAT scan and as long as his breathing continued to do as well, he could be off of the machine by Friday November 9th (which would be day 8).  I was overjoyed!  I went home that night feeling VERY positive. 

On day 7, I stayed home.  I was finally over my virus and to be honest, with all of the tests dad had that day, I would not see much of him.  I figured the kids needed to see me as well, and I know Sean was happy to see me.  I checked in from time to time with the hospital but there were no major changes.  I decided to make dinner that night - the first dinner that I had been home for in a few days.  I turned the music up in the kitchen and set to my task.  In the middle of my dancing/cooking/singing the phone rang.  It was the doctor on call in ICU.  I answered it sounding breezy and light.  He sounded sombre.  The call went something like this:

Dr:  Jennifer we did the CAT scan on your father

Me: Oh yeah?  How did it go?  Can we take him off of the tubes tomorrow?

Dr: Well as you are aware, he was having issues with his kidneys and some abnormalities showed up on the blood work, hence the CAT scan.

Me: Okay....

Dr: Can you get down here right now?

Me: Umm not at the moment... why?!

Dr: I am sorry to say this (deep breath and then sigh) Your father has stage four lymphoma. It is a cancer of the immune system. 

Me: Okay...

Dr: Do you understand what I am saying?

Me: (with a buzzing in my head and sounding way too cheerful still) Yup! So can we take him off of the tubes?!

Dr: Jennifer, I am sorry to say this, but it is terminal.  Do you understand what I am saying?

Me: Sure.

Dr:  I am referring his case to the head of ICU.  Tonight however I would like to order an upper GI scope if you will consent to that. 

Me: Go ahead. 

Dr. Okay, the anaesthesiologist will be calling you shortly. 

Me: Okay, bye.

Yes, I sounded rather flippant.  I was in shock.  Big time.  I noticed the song was still on the radio and heard the lyrics for the first time:



 
I think I've finally had enough, I think I maybe think too muchI think this might be it for us (blow me one last kiss)You think I'm just too serious, I think you're full of shitMy head is spinning so (blow me one last kiss)
Just when it can't get worse, I've had a shit day (No!)Have you had a shit day? (No!), we've had a shit day (No!)I think that life's too short for this, I want back my ignorance and blissI think I've had enough of this, blow me one last kiss.


Really?  REALLY?  I walked into the living room where Sean was sitting with the girls.  He looked up and smiled, then frowned.  I just slowly shook my head and walked out of the room.  I walked into the kitchen, looked both ways (to make sure no one was going to get hurt) and threw the kitchen chair.  Just fucking threw it.  I then took a deep breath, turned off the radio and the phone rang again.  It was the anaesthesiologist discussing the procedure.  He said he would call me back in about 30 minutes when it was done.  We sat down to dinner (I did not even taste the food) and the phone rang again - the procedure was done and they found no cancer cells.  He then informed me that typically they do a lower GI next, and then lymph node removal, but he wanted to go straight to node removal.  I asked about the risks etc and then gave him the go ahead.  He asked if I would be in the following day and I replied yes.

Talk about a roller coaster of a day.  One minute I am thinking hooray it will all be better and then that word enters my life.  That ugly fucking C word that NO ONE wants to hear.  The one no one wants to write about and this fucking word was going to rob me of my father.

I despise that C word.  Fucking hate it.


Day 8 I woke up determined to go in and see my Dad.  I wanted to know what the hell was going on.  This was not right.  This had to be a bad dream.  This could NOT be possible.

But it was.

When I go to the ICU, I met the new doctor on (head of ICU) who seemed quite competent (and good looking - sorry, he was).  He told me that they were going to try a round of steroids to help Dad, as they believe the steroids caused the tumour to shrink which gave off gasses that caused the kidneys to go into failure.  He was in a controlled environment so they could do it while he was on Dialysis.  He would be on Dialysis for a few hours only this time, not all day.

I held my Dads hand that afternoon, and I forbade any of the Doctors or Nurses from saying CANCER in my Dads room.  In that room was my Father, not a disease.  Sean picked me up that night and another song came on the radio.  And I realised it was the song for this experience.  
It was Alanis Morissette and the song was called Guardian.
You, you who has smiled when you’re in pain 
You who has soldiered through the profane 
They were distracted and shut down 

So why, why would you talk to me at all 
such words were dishonourable and in vain 
their promise as solid as a fog 

and where was your watchman then 

I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honour of all, as your guardian 

you, you in the chaos feigning sane 
You who has pushed beyond what’s humane 
Them as the ghostly tumble weed 

And where was your watchman then 

I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honour of all, as your guardian 

now no more smiling mid crest-fall 
No more managing unmanageable 
No more holding still in the hailstorm 

Now enter your watch-woman 

I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honour of all, as your guardian 


Well hell.  If that wasn't fitting what is.  That is what I was.  I was my Fathers Guardian.  And I faced many tough choices and decisions ahead....

Day 3,4, and 5 of the beginning of the end

I woke up on day three of my dad being in hospital feeling even more ill. Come to think of it, I have caught everything under the sun since then - hopefully that is over now.  However I digress.  I was not going to go up to see him that day, however how could I not.  The thought of him alone in that room bothered the hell out of me.  I called a good friend and she went down with me. 
 When I got to his room, I was pleased to see he had other visitors - people he worked with and that I knew he cared deeply for (he would mention them all of the time and how much he admired them - so although I am not naming them here, if and when they read this, they will know who they are).  I had my 'nurse' mindset going in that evening.  I walked in, asked him how he was doing, looked at his chart, got a cold cloth and dabbed his forehead etc.   My friend pulled me aside at one point and told me to put the caretaker aside and just be the daughter, something I was having trouble doing because I felt that by being the caretaker, I was not letting it complete devastate me (how sick he really was).  It was my way of staying sane.  

The next day, the 4th day (The Monday) I did not go in.  I knew I was getting sicker and sicker and needed a day at home.  That did not stop me from calling almost every hour just to see how he was doing - I am sure I pissed off more then one nurse calling.  Finally he called me.  My neighbour and friend had taken Sean and the girls in for dinner so I was alone in my room when he called.  He sounded horrible - worse then I had ever heard him.  I know he was on something as he sounded slightly high, but he also sounded like a complete stranger.  We made small talk (because I knew his breathing was not making it easy on him to talk) and both laughed at the fact that we were eating out dinner in bed.  I told him I loved him and hung up the phone at the end.  When Sean and the kids came home however, I called him back so he could say goodnight to Ariana.  I will always remember Ariana's part of the conversation:

Ariana: Grandpa are you sick?Ariana: Are you my mommy's daddy?Ariana: Well that is why I love you so much!  

I don't know why I was so determined to have her talk to him that night.  Maybe I knew?  Either way, it was the last time she ever had a back and forth conversation with him.  I went to bed that night, willing myself to feel better for morning.  I was my dads emergency contact so I slept with the phone next to me all night and woke up the next day (Day 5) with no missed calls - which I thought was a good thing.

  I called the hospital to let them know I would be in later in the afternoon.  The nurse patched me through to his doctor right away however - something I found strange.  The doctor came on and asked me if I knew my Dad had a DNR (Do not resuscitate).  I did and I didn't... I knew he had one where if he was 100% brain dead on machines, take him off.  I did not know he had a basic DNR for even a heart attack.  I asked the doctor why he was asking me this and he said "Your father had respiratory failure again last night and a cardiac arrest".  My heart fucking sunk.  He told me I needed to come in soon and talk to Dad about this and find out exactly what his wishes were.  At this point we were told that with the COPD and pneumonia, that his kidneys were starting to fail.  They wanted to put him on dialysis to see if it would help, and he was refusing to use the nebulizer.  They mentioned that in ICU they could put him on a breathing tube in order to clean out his lungs and they could do dialysis in there as well.  

My neighbour came over with a 'Living Will' kit and we filled it out - putting myself as his medical authority.  Dad and I had discussed this in the past and he always said he would not sign such a thing.  I was unsure of taking it, thinking he would just wave it away.  We got to the hospital (Myself, Sean and Larissa - Ariana was in school) and Sean got to see him for the first time in the hospital.  I tried warning him but I don't think he fully understood just how shitty Dad looked.  Dad had the nebulizer on and was obviously NOT happy about it.  I walked over, kissed his cheek, put a cool cloth on his head (he had this crazy sweating going on every day although it was not hot in the room and he was not hot temp wise) and looked him the eyes and told him about the DNR and if he signs this paper giving me authority, I can have him in ICU, intubated and on dialysis to see if it can help or fix him.  He grabbed the paper out of my hands and signed it.  I promised him that if it didn't help at all after a few days, we would take him off of the life support.  He just looked so tired and I was sure I was doing the right thing.

  Later that day, Sean had to go home to pick up Ariana so I stayed by myself.  God that was hard.  I had to wait two hours to see him because of the intubation.  Before they put the tubes in, I told him I would be there all day, and that I loved him.  I asked him if he wanted me to get married, like now, so that he could be there - he said no, not until he got out of hospital.  I then asked if he wanted to see both girls before the intubation and he replied he would see them at Christmas.  I tearfully held his hand and then left the room so they could start the procedure.  The next time I saw him, he was out cold.  He looked like he was sleeping which was good, but all of the machines scared the shit out of me.  I just sat and held his hand before going home for the night. 

Day 2 of the Beginning of the End

On Day two of my Dad being in hospital I woke up energised and ready to tackle the day.  I got out of bed, went downstairs to have a coffee and coughed.  And realised 'shit, my throat hurts'.  I never once thought "can't go see Dad today" because I knew that they had masks for me to use.  It would suck to talk to him from behind a mask but what the hell.  At least I would be able to visit.  I called the hospital to see how he was feeling (he had sent us a text message with his room info and to ask me to bring him some money from his account) and then headed up.  

Me, with the fancy hospital mask.

When I got there, the first thing was that he was in an old looking ward and a non private room.  He had a bed by the window so I did not see him at first.  When I did see him, he was hooked up to a nebulizer.  He was not comfortable at all and was starting to have panic attacks from the breathing treatments.  I told him (sternly yet kindly) that with his emphysema and pneumonia, he needed the breathing treatments.  I could tell it was hard for him to breath - he was sitting up at the end of the bed and was pretty grey looking and weak.  When he finished the treatments we watched a little bit of the news - mostly Hurricane Sandy and how the crane in NYC was dangling.  He mentioned Obama was being a stand up guy about the whole thing (He was not an Obama supporter) and I looked at him and laughed and said wow, you MUST be sick to say that.  He smiled thinly.  He kept repeating how he should have come in earlier and he was sorry that he waited.  I would get up every once in a while (I am always in mom mode it seems) and get a damp cloth for his sweaty brow.  I made sure he was comfortable and just sat with him, wearing the stupid mask.  He complained at one point about how heavy the machine around his neck was (it was his heart and O2 monitor) and asked me to hold it for a second.  I replied that yes it was heavy and re-adjusted it for him.  In truth it was no heavier than a cell phone.  But that showed me just how sick he really was.  At this point we still believed that he was in for pneumonia.  I talked to his nurses and said that he was not wanting to do his breathing treatments due to anxiety and that I wanted them to give him something.  Also his profuse sweating was concerning me.

Little did I know what was to come.