11/2/51-3/27/16

My dad passed away peacefully at 8:15 p.m. on Easter Sunday, 3/27/16.

It was a long weekend, and if you don’t mind, I’m going to explain how it all went down because it was quite honestly the best way it could have ended.

On Friday I had a half day at work.  My boyfriend and his family were downtown so I met up with them and we had an impromptu bar crawl.  Zack and I got back to my house at around 10:00 p.m.  Some of our friends and neighbors were over for some pizza keeping my mom company.  After everyone left I volunteered to sleep on the couch in case my dad got up.

One thing that was particularly horrible towards the end, and it was something we didn’t really know about, was how the high levels of ammonia in my dad’s system were going to affect him.  My dad’s cancer spread to the liver and unfortunately the liver is in charge of converting ammonia into urea.  The urea usually gets eliminated in urine but because my dad was in liver failure this wasn’t happening. Most normal people have an ammonia level somewhere between 16-60.  My dad, a week before his death, had a level of 160.  This was causing confusion, disorientation, mood swings, and high irritability.  So for his safety we started taking shifts and sleeping on the couch at night to make sure he didn’t wake up in the middle of the night and hurt himself.

So here I am sleeping on the couch on Friday night and at about 2:30 a.m. guess who wakes up?  I wake up to find my dad standing in the dining room mumbling to himself.  I gave him his meds in an attempt to somewhat sedate him and get him back to bed.  I followed him around the house, making sure he was stable and not running into things, until he fell asleep on a couch for a bit.  I gave him about 15 minutes until I asked him if he wanted to go back to bed.  I got him up and got him so close to his room until, out of nowhere, he decided he wanted to go downstairs.  I knew he couldn’t make it.  He was too shaky on his feet and I could just see him falling down the stairs.  I barricaded the door way as best as I could and we got into a fight.  He was yelling and pushing me and I was yelling and pushing him back.  This was the hardest moment in all the three months.  I felt like crying and screaming for help but I kept my cool and fought him off until he tired himself out.  I knew that wasn’t my dad.  He didn’t know what he was doing or what he was saying, he was confused and scared.  Finally he asked me to take him to bed and tuck him in.  We said goodnight and I kissed him on the forehead.  That was the last time he got out of bed.  I was the last person he talked to.

Saturday started out like any normal day.  My dad was asleep all morning and that wasn’t weird because he had been sleeping so much lately.  My boyfriend went out to run some errands and my mom and I straightened up the house.  At around noon my uncle and my cousin showed up unexpectedly.  He lives pretty far north in Wisconsin so they got up really early to come in.  He said he felt like he needed to come.  We chatted a bit, Zack brought us lunch, and then he went to talk with my dad.  My dad was in a deep sleep at this point so he didn’t wake up or really acknowledge that my uncle was there.  It was hard to see my uncle so sad because he and my father were the closest out of the 4 siblings (my other Uncle passed away this past November).  He said his goodbyes and headed over to my aunts before going back to Wisconsin that night.

Zack and I eventually kicked my mom out of the house… she needed a good night out.  We sent her to my dad’s club to hang out and have a few cocktails and Zack and I spent the night in watching The Ten Commandments… a Papa Z favorite.  Every 4 hours I’d go in and give my dad his morphine and his lorazapam and give him a kiss.  Around 6:00 p.m. I realized his snoring was sounding different- there was a wet sound to it now.  I called the hospice hotline and they basically confirmed what I was thinking- he had congestion.  Basically what that means is that he hadn’t moved in almost 24 hours and he was still producing saliva.  With him not swallowing so easily and him laying on his back  he was getting a little too much saliva in the back of his throat.  The hospice team gave us some drops that would help clear that up so I gave him some of that and left.  However, I knew things were bad after that.  On Friday the hospice nurse and my mom talked and she had said that maybe my dad had about 2 weeks left.  I knew immediately after giving him those meds it would be sooner.  He wasn’t going to make it through the week.

My mom came home a little toasty and decided she needed to sleep next to him that night.  She didn’t want him to be alone and I understood what she meant.  She was afraid he was going to die so I let her climb into bed next to him.  At around 6 a.m. on Sunday my mom woke up to my dad moaning.  The sound was horrible.  He sounded like he was in pain but from the look on his face he didn’t seem to be.  I think it was involuntary but it freaked us out enough that we called for a hospice nurse to come.  She came around 9:30 a.m. and did her assessment and let us know that things had moved very quickly and that he probably didn’t have more than 24 hours left.  Honestly, we weren’t shocked.  I think we all knew it was bad. Zack left to go spend Easter with his family.  My neighbor called for a priest to come and my dad received his last rites around noon.  My mom and I decided to wait a bit before we called my Aunt and Uncle because we knew they were both celebrating Easter and we didn’t want to ruin their holiday. I went to our friends, The Murray’s, for Easter dinner.  Actually, it was taco Easter this year.  A campaign I had championed (with the help of my father) for about 5 years. Finally, a bright spot on this crappy day.

At around 4:15 p.m. I came home with a plate of food for my mom.  She informed me that my Aunt was coming with 2 of her children to see my dad.  They came, cried, and said goodbye and left after about an hour and a half.  Zack got back to my house around 6:00 p.m. and he, my mom, and I all watched a little bit of t.v.  At around 7:15 p.m. the Murray’s texted me asking if it were ok to come over.  These people are like family to us.  We’ve vacationed together, gone to school together, spent holidays together… I could go on and on about how much they mean to us.  And Kevin Murray was my dad’s best friend.  So of course I told them to come.  I went into my dad’s room shortly after they texted me and gave him his meds.  The hospice nurse told us that even though he wasn’t responding he could still hear us and that we should talk to him.  So I took a quick moment to let him know how taco Easter went, how the NCAA tournament was going, how much I loved him, and to tell him that the Murray’s were coming over.  I kissed his forehead and told him I’d see him in a little bit.

When the Murray’s came we all sat in the front room (next to my dad’s room), cracked open a few beers and started sharing stories.  None of them were ready to see my dad yet so we thought we’d all sit around until they were ready to go in.  We joked around and picked on my dad for all his goofiness, told stories about his kindness, and reminisced on our many years of friendship.  Suddenly though, I didn’t feel right.  I quietly got up and said I was going to the bathroom.  Instead I went in to check on my dad.  I opened the door and knew immediately that he was gone.  I walked in, checked his pulse, and took a few seconds to myself.  I walked out and looked at everyone and said “I think he’s gone now.”  It took the room a second to figure out what to do next.  My neighbor Sam got up first to check on my dad and confirmed what I already knew.  It was 8:15 p.m.

I truly believe that my dad waited for everyone to get there.  It was the perfect way for him to go- in his own bed a room over from his best friends having a laugh.

After the hospice nurse and the funeral director came we spent the night drinking with a house full of people until about 1:30 a.m.  I’m not joking, after word got out our company expanded from 5 people to like 20 people.  It was the perfect ending to a rough night.

Sorry that was so so long.  I just thought I should explain how it all went down.  The thing I was most afraid of was him dying.  I didn’t know how it would all play out.  I was afraid to miss it and I was afraid to be there.  I was nervous and anxious and my mind was constantly wandering.  I didn’t know how it was going to go but when it happened I was happy.  I was happy I was there and I was happy his friends were with us.  I was happy that he died with dignity and I was happy he was at home.  I was happy our dog got to get in bed and say goodbye to him.  I was happy that all our neighbors showed up after he was gone to pay their respects and keep my mom and I company. I was happy we turned it into a party.  I was happy that he was free.

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If you made it to the end kudos to you.  It took a lot out of me to write this and I appreciate you making it all the way down here.

 

Allison

11/2/51-3/27/16

9 thoughts on “11/2/51-3/27/16

  1. I want to first start out and say that I am so, so sorry for your loss. As “right” as it felt for all of you, it’s never easy, and it’s never good.

    It’s incredible to me how similar things are for those that suffer from PC, and it’s really interesting that such a horrible disease takes people in a relatively gentle manner at the end. Your dad 100% could hear you and knew you were there. He 100% chose his own time to go, and you guys seem to have done what was best in your situation; don’t ever doubt that.

    I’m not going to lie to you – these next days and weeks are not going to be easy. there’s going to be times when you’re perfectly fine, and then, in the quiet moments, it will hit you. I hope that you know that your grief doesn’t have to be kept to yourself – because I didn’t, and I wish someone had given me a wakeup call. I didn’t want to put my sadness and my burden on others… but it will help to talk (when you’re ready). Your trip in May, for example, will be a test, becaue you’ll feel guilty about having a good time… but remember that you deserve it. You deserve a break. You deserve to live and have fun. I don’t know you and I didn’t know your dad, but it’s clear to me that you loved each other fiercely and that’s something to keep hold of through the darkness.

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    1. Thanks so much for your kind words. I just went back to work yesterday and waking up to no breakfast or a ride to the train was really hard. He got up every morning for me and all of a sudden I realized that was over. So it’s been little moments so far that have gotten to me. But I’m just going to stay as positive as I can and call someone when I can’t be positive anymore. I’m going to miss him so much but it really does give me comfort knowing he went out on his own terms

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      1. We went on vacation last September – were in Vegas for his birthday, and drove to CA for a few days, we ended up driving through the city in CA where he used to live on complete accident, and when we got back to the hotel room, I actually picked up my phone and went to call him to tell him before I remembered, and I think that that “little” moment hurt worse than the big ones in the 5 months prior. It’s going to happen, but it does get a little easier. Make use of any support that the hospice people or the hospital offers, it truly is an asset.

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      2. I was thrilled to find out the hospice nurses would be checking up on us for a year. I know we hadn’t had them very long but they were a huge asset so it’s nice to know they’ll make sure we’re doing ok over the next few months.

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  2. My favorite part of this was the “happy” ending. You and your family were undoubtedly the greatest treasures in his life, and I’m sure he’s very proud of all of you for the way you cared for him during his illness. Prayers for you and your family for continued healing and strength.

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    1. Thank you so much! As sad as it is and as much as I miss him I’m still glad he went out on a high note. The last thing we ever wanted was for him to suffer so it was “happy” in its own weird way.

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