This week has been the hardest week of my life to date and it seems it isn't going to end anytime soon. This is the week we have watched the incredible man I know as my father in law, Jack go from a lively and healthy 82 year old man to a man holding onto his last breath in hospice. As I sit here now, he is laying in hospice care beside me, dying. When I started writing this it was August 21, 2016. Jack passed away at 12:50 am (August 22, 2016) the night I started writing this.
Last Sunday when I wrote we had to cancel our Sunday long run to go to the hospital because he was getting admitted with abdominal pain. Kevin and I went there first thing in the morning, worried and unsure of what to expect. We spent the day with him and family listening to the story of how he got there. Patty, his loving girlfriend brought him in on Saturday, the 13th of August in the evening after a lot of convincing to go in. He had been stubborn with pain in his stomach and hadn't been eating or having bowel movements.
He got admitted on Sunday, the 14th of August and they did an x-ray and saw he had some kind of blockage. They put a tube down his nose called an NG tube which sucks out the fluid in his stomach/intestines that could have infection in it and it will suck out any abdominal gases too that could be causing the discomfort. He was also told no food and only liquid nutrition via an IV. They said they would wait and see if it the blockage would shift. He experienced some diarrhea and the pain continued. Monday was a day similar to Sunday.
The next day, Tuesday the 16th of August, they looked again and still no movement and further discomfort. They hypothesized it was from the pain meds from his hand surgery. But, they said, if it isn't any better by the next day they would be looking at surgery.
Wednesday, the 17th of August came and it was full of "I forgot, let me find out, we will see, I am waiting for an answer" All day they went through this until late in the day they said he would have surgery the next day but couldn't say when? It was so incredibly frustrating as Jack had been there since Saturday night and here it is Wednesday and he is in great pain and not eating. They finally gave him an answer which was to be on Thursday at 9 am. Finally.
Thursday morning, the 18th of August, Kevin and I got up to be here at the hospital at 730 so we could see him off in time since his surgery was supposed to be at 900. We came into the room and Jack was sitting up in the chair by the bed, happy and looking great, best he has looked all week. He brushed his teeth, washed his face, went to the toilet. He looked great, raring to go for the surgery. He was making jokes even about getting the bed bath by the nurse and how much he loved having his back done. The guy came to get him to take him to surgical and Jack asked if he was busy and he had said yes and he said you must be because you were an hour late. He even told Grant to get out of the way because he was going to surgery. We all laughed and kissed him, told him we loved him and said we will see him later.
As a clan we all headed down to the waiting room for the day. It was Patty, Kathy, Grant, Kevin, Ken, myself and later we were joined by Lindsay, Anson and Kyla. We took up quite a huge area, but we were having a good time. One thing to know about our family is we spill a lot. There was a spill in Grant's truck with some coffee. I spilled coffee on myself. Kathy spilled something on her sweater. Then we get settled in and there was another spill. Kevin and I decided we should get some breakfast since it was going to be awhile.
We went to Kneaders which is a bakery place which we have come to love and have eaten there a lot this week. A lot. We had a delicious breakfast sandwich and brought back a selection of sweet rolls for everyone else, knowing that Patty had not eaten and most likely Kathy didn't either. I managed to have another spill with coffee on the way back to the hospital. The lid wasn't very secure. We found out that Kathy, Patty, Ken and Grant all went to get something from the cafeteria. Kevin can't go to the cafeteria after dealing with the loss of Ben. It is just too much. Our sweet rolls were not going to go to waste though.
While we were waiting for Jack to come out of surgery we had a couple really crazy things happen. We were near the elevators and there was a woman there with a small child, maybe 2 or 3 years old. Her mom was waiting at the elevators to open and the little girl must have had her hand on the door because as it opened it pulled her small hand with it and it got wedged between the door of the elevator and the area the door opens into. She screamed out help as she couldn't get the girls fingers out and the auto door open wasn't working. So Kevin and I jumped up to assist and got the door open and her fingers out of it. It was quite a harrowing experience. Later there was a couple people who got stuck in an elevator for about 45 minutes.
While we were waiting for Jack to come out I ran into a dear friend of mine, Tiffany who lost her child at birth last year. She distanced herself from the world for obvious reasons and we haven't been in touch. She is now expecting another child and I am so happy for her, but she has been struggling with her grief. I shared with her information for the MISS foundation for children lost at birth or pregnancies that didn't go full term. I hate to think things happen for a reason knowing now the results, but I am glad we were able to meet her.
At one point a friend who knows Jack and Patty well came and let us know how things were going with the surgery. He said it went well and that it was from diverticulum that burst and was infected and the surgeon was removing everything that was infected, but he was doing well. At this point diverticulitis became the subject of discussion. His diet would have to change, Kathy and Kevin would need to be scheduling colonoscopies to make sure they are okay too. Ken had an issue 3 years ago for the same thing, except his made him very sick and infected his blood. He recovered and had the colostomy bag for 4 months. Patty was getting more and more concerned at this point about the diverticulitis and why it wouldn't show up on the x-ray, if it would show in an MRI and why they didn't do that. She would go in circles about it. We explained multiple times the only way to determine what was wrong was to open him up. No matter what he had to be opened up. There was a blockage and that was very evident on the x-ray and the standard scope of practice would be exploratory to determine the cause and fix it. Multiple times this was explained. We struggled through this entire week and event to get Patty to eat and listen. She just wasn't handling it well and we understood that entirely. We love her deeply and were so worried. It was a blessing when she was able to come to terms for her own piece of mind and comfort. I felt bad that I was stressing her out with trying to help her come to terms. It was a stressful week for all of us and the journey ahead is hard.
We finally had a visit from the surgeon who explained quite quickly what he did. He said he removed 2 feet of the small intestine, 10 inches of the lower intestine and some of the colon and he placed a colostomy bag which down the line could be reversed. Everything sounded well and he was moving to the recovery area. Fantastic, everyone could breathe easy and he was going to be okay. By this point Lindsay, Kyla and Anson joined us. We had a call for Patty to talk to him in recovery and she spoke with him, he said he was doing okay and he loved her.
They transferred him up to his room that he was in before and we would be able to see him. We moved all of our junk to the waiting room upstairs and went in to see him in small groups of two. He was hooked up to oxygen, had the NG tube in and his incisions were wrapped up with an abdominal binder. He looked good for having a major surgery. He was groggy and in and out of it. He had a morphine pump that he could push the button on for when he was in pain. It was made clear that only he could push the button and nobody else. It is a regulated amount without a worry of overdosing so he would get only the right amount. He was asking for ice chips which would give him. He was in and out of it, but it was expected with the anesthesia. Ken left shortly after we got up to the room he was in before, he had work to do in Heber.
The surgeon came bellowing into the room, talking really loudly and boisterous. We had been talking in low voices and whispers to allow Jack to sleep and I thought this guy is a real piece of work being so loud. He asked how he was doing and tried to talk to Jack but at this point he was snoring pretty significantly. He was concerned about him being so sleepy and wanted the morphine meds stopped. He didn't want him to have the ice chips either. We asked him about the surgery because he had talked so fast before. We showed him a generalized pictured of the stomach area and asked for an explanation.
He told us to Google It!! For real. Google it. He said it was a Merkel's diverticulum that burst. I can tell you the Google didn't tell us what he did. I couldn't believe that he wouldn't sit down and tell us. The hospitalist explained it completely in the morning thankfully. He explained that it burst and the infection from it went from the small to the large intestine and it was all contained within the walls of the intestines so no chance of the infection spreading. He said that 2% of the world's population get this. Later, Patty thought and perseverated on that 2% have this burst and have a stroke following and went right back to the MRI etc. route.
Anyways, Kevin and I planned on going home after Kathy went home and had a shower and could feel human again and come back. Patty was struggling seeing him like that and was focused on the MRI etc and couldn't get past that part. While she was gone Kevin walked Patty to her car because she was so tired and getting confused so she could get some rest. She forgot her phone and that had to be driven to her house too. He got us some pizza for dinner and we waited for Kathy to come back from showering etc. When Kathy got back we headed home. Knowing that Jack was resting and he was going to be okay. I had made a call to a friend of mine in the medical field who is familiar with all of the Skilled Nursing Facilities for the best one for him for his needs and care for recovery. We made a plan to look at the facility in the morning and sort out insurance coverage etc.
Friday morning, the 19th of August we went for a small run to see the boys at school and made a plan to do flights of stairs on the hour as we spent the day with Jack. The sitting around is tiring for some reason and we were eating terrible. We go to the hospital all planned for the day in some exercise clothes. I had told Kevin to change his shorts since we would be doing the stairs. I would feel bad about this and thankful later. We had also printed out a picture of the intestines and thought we would ask the surgeon to use some colored pencils to explain what he did. We said after we parked the car, "what adventures await us today?" given how the waiting room was quite the scene.
When we got into the room we saw that Jack was sleeping very deeply still. Kathy reported they tried to wake him up and he wouldn't wake up. He had no meds on board and was on 3 liters of oxygen. He was sleeping so deeply and just couldn't be woken up. We thought that maybe it was because he was so exhausted and depleted going into surgery. He had a monitor for his oxygen and heart rate which I was watching for any changes given how hard he was snoring. Our plan was to get there for Kathy to go home and shower and whatnot. At the same time Daisy, Grant's mom was down stairs getting a colonoscopy done. Kathy went downstairs to see how she was doing.
Meanwhile, upstairs Jack's oxygen kept on dropping. I got the nurse in and she upped the level and it wouldn't come up. So we put the nose part in his mouth and it wouldn't come up unless I held his mouth shut around it. She said she would get a mask for him and try that. We put the mask on and it was stable for a little while. We had already called Kathy to come upstairs. At one point they had respiratory come in and did a breathing treatment. Vern and Barb L. came in for a visit and stayed for awhile. I had been tapping on his chest to get him to clear his congestion to swallow. He seemed to be choking. Barb had leaned over coughing as if to encourage him. It was cute.
He continued to struggle with maintaining his oxygen. One nurse came in and said I will get another mask as his monitor was dropping. I wasn't okay with how long he was going to be gone with such a low level of oxygen so I cranked his oxygen up to 8 Liters. When the nurse came back with the new mask and it didn't work much either the hospitalist doctor was called in. Dr. Weiss is a fantastic doctor and has compassion and understanding. He was completely perplexed as to what was going on. He ordered a chest x-ray and a CT scan and for him to be moved up to a higher level nursing care area where he would have 1 nurse to 3 patients. We gathered all our stuff and headed up to the new room area which is a secured area.
We got up there and he was settled into his new room and the nurse came out to talk to Kathy and Kevin to let them know the rules of how things work up there etc. Kathy went with Jack with the nurse for the CT scan also. At some point Kevin and I left to get Cane's to get Patty and everyone to eat. The timeline of things gets a little crazy through this time so forgive me. We got back and I think that is when the nurse got Kathy to tell her the results of the CT scan.
The way this area is set up is a secure area for both privacy and infection control and safety of the patients. There is a door that can only be accessed by a buzzer to the nurses station or to someone on the inside to let you in. We had quite the group at this point. Stacy and her Kevin, Grant, Kathy, Kevin, Patty and me. Lindsay and her children went home after the surgery on Thursday.
Kathy came out from the secured area and I could tell that the look on her face it was bad news. I gave her a hug and she said I need to talk to Kevin. I followed her to Kevin and she said, "CT scan showed multiple strokes". We held another and just cried and cried and cried. There is no coming back from this. With multiple strokes it affects multiple parts of the brain and given he hasn't woken up and all of the other issues present, it was the end. It was like a shower of blood clots on his brain. They can estimate that he had them starting when he went into that deep sleep around 7 or 8 the night before. One area affected was pretty significant as it controlled his swallowing. Every lobe in his brain was hit, mostly his brain stem. Typical treatment would involve a type of anti-clotting agent to break down the clots, but with Jack having open incisions, it is not an option. If he had the stroke on its own and the anti-clotting agents were given, there were so many areas affected the outcome would have been the same. I said he had the world series of strokes. Go big or go home.
Discussions of DNR were brought up and decided upon. Phone calls made to Lindsay, Sean, Ken, Zach, Josh and multiple other family members. We were not confident he would make it through the night with a prognosis so severe. The neurologist tried to encourage other methods to determine why he had multiple strokes and further testing. No matter what the outcome would be the same, so why put him through all of that. The surgeon who performed the operation came in and he was also devastated to see that Jack had declined and was laying there in the condition he was in. We told him the incisions and colostomy looked great and thanked him for a great surgery. I can't imagine what must have been going through his mind. I am sure he wanted answers too. We wanted to tell him to google it. However, the decision had been made. The decision to provide only comfort care, meaning no more antibiotics, lower his oxygen to 1 Liter, provide morphine and Ativan for pain only.
Noelle was called and the discussion about the boys seeing him was brought up and William wanted to see him, Matthew didn't. We asked if she would bring Cecilia too. Cecilia was at home looking after the animals. She was so helpful through the entire week looking after the house while we had to do what we did. It was hard to leave her home but, she didn't want to see him. She wanted to be with us though. It hurt so much to see her so devastated. She was so close to Grandpa and loved him dearly. When they all got there they were in tears and it was so hard to see our children hurting so much. Matthew changed his mind and wanted to see him. Cecilia never did see him. Matthew said something so profound for a 9 year old; isn't it interesting how one life leaves and another one begins, speaking of his wonderful Grandfather and the birth of Anson who at this point was not even 2 weeks old. Lindsay has a photo of them together thankfully before he went into the hospital.
We weren't sure he would make it through the night so we called everyone to see him. As the evening progressed the visits from family and friends increased. Lindsay, Hugh, Kyla, Anson, Sean, Zach, Kathy and Grant's pastor and friends came as well. The pastor came in and prayed with us and for Jack.
They all came and went. Cecilia fell asleep on the couch things and everyone was crowded around in the waiting room. I would stay in the room with Kathy and Kevin and come out on occasion. At the end of the night for most everyone it came down to Kevin, Kathy and I who watched and waited for his last breath.
The nurses on this level were the most compassionate and caring nurses I have ever met. Just amazing. Our main nurse, Gina was incredible and humble. She had a trainee nurse with her who was just as amazing. We knew we were in good hands with these lovely women. They told us there was the possibility of having to move to another room because this was an ICU room so they would need the bed. Which was understandable because Jack was in comfort care vs immediate care to save his life.
The tears wouldn't stop coming. It got to a point that I couldn't see anymore from my contacts being so messy from crying. Given we had no idea we would be there for the night (and many after) I didn't have solution or anything so I took them out and threw them away. At some point in the night the decision was made for everyone to go to Jack's house and get some rest. A big slumber party for them and a night unknown for the K gang.
Kathy being the old hat at hospitals could find the coffee anywhere. This time Kevin and I went to seek it out and it appeared they only had decaf. Well that needed to change so I cleaned out the regular carafe which had burnt coffee in it and got us some coffee going. I don't know that I have drank so much coffee as I have this last week. The new shift came on and we met our night nurse #1, Cecilia who was as kind and compassionate. She did notify us we would have to move rooms at some time and we waited until we had to move again. Room number 3 since arrival. Each move our stuff just got put into what bag we could find.
Into the room we go. Kevin calls this room the dungeon room. It was like a room forgotten patients are sent to die. The date of the last patient in there was 12 August and his vitals sheet was in the thing on the wall, looks like he died. It was dark for Jack's comfort and we squeezed ourselves in there the best we could. We were so tired. Just mentally, emotionally and physically exhausted. We met the new night nurse #2 and she was awful. She is a person who clocks in and clocks out, it is just a job, no heart or compassion. We asked her for more morphine for Jack as on the hour he would have a pained frown on his face and start to get all jerky and looked in deep pain. His breathing continued to be labored and sounded wet and awful. When she came in she didn't want to give it to him. She wanted to make sure he was unresponsive and in pain. She was cold and heartless how she handled Jack. She lifted his arm up and let it drop to check his response. Not once, but three times which was completely unnecessary. She is doing all of this and we are watching her and giving each other looks like WTF. She goes around the corner to the computer and she was at an angle that Kathy couldn't see she hadn't left the room. Kevin and I could see she didn't. Kathy says, "What the hell was that about?" Yeah, Kathy swore!!! Knowing she was talking about the actions of the terrible nurse. At the same time the nurse had turned the lights up quite bright and so I said, "It was the nurse with the lights. She just turned them on really bright." trying to cover up Kathy scolding her. Then the nurse starts moving the dimmer light to test what was better. I just wanted her to leave!! Awful. We couldn't wait for the next shift to come in to get rid of this one.
I kept monitoring his heart rate and urine output. The area in his brain that got affected wouldn't allow him to control his body temp. He would be roasting hot and then get cooler. He was sweating but not a normal sweat. It was an oil, wax like sweat. Very weird. We would try to bring him comfort with a cold washcloth on his forehead and it would dry out and we would put another. I felt like it was my job to monitor and take care of Kathy and Kevin. Kathy followed all the medical information. Kevin would make sure we were eating and drinking. I would check his vitals and help keep track of timelines. It worked for the 3 of us based on our personalities and work history. We are all mission orientated and can run on little sleep and can tap into our energy stores to get things done. We could laugh and joke. Cry and sit silent. We could do it together and none of us would feel alone.
However the sleep factor was becoming an issue. We tried to sleep in the room with pillows propped up here and there and it didn't work. Kevin suggested we go have a nap at the ICU fold out chair things for a little bit and we would change out with Kathy. We slept for an hour or so. In that time something caused Kevin to jump up and he scared me and I looked at him completely confused and I said I thought you were your dad!! He changed out with Kathy and she came in and slept for a bit. We both woke up at 7 ish and headed back to the dungeon. While we were gone Kevin said he almost came for us because he was lonely. He opened the blinds as morning broke and took a picture of the most beautiful sunrise. He told his Dad it is okay to go to the light.
There we were gathered around and no changes had occurred. We were surprised he made it through the night. Grant had called and asked if we wanted anything. Yes. Coffee. Coke. Kneaders breakfast. Patty was on her way too. We knew the whole gang would be with us soon. Gina the nurse from the night before stopped by to see how things were going which we thought was nice and thoughtful. The hospitalist came and talked to us about hospice care and got that going for us for the social worker to come in and talk to us. One of the co-workers of the surgeon came in and talked with us too offering his condolences. We felt he was coming by as a cover your ass sort of thing given the last medical thing he had was from surgery from his co-worker.
A lot of funny things happened, maybe not as funny if you were a very serious person, but funny if you are sleep deprived and completely delirious.
One is that while Kathy, Kevin and I were in the ICU I was checking Jack's pulse, a thing I would become obsessive over and I was talking to them and it was something somber and serious. Kathy was sitting on the bed with her legs the same direction as Jack and she was sitting closer up by his head so her legs were in line with his arms. I was on one side of the bed and she was on the other and Kevin was by his head. For no reason at all she stretched out her leg and it looked like from my perspective he raised his arm or he grew a leg that lifted up. Scared the crap out of me and we laughed and laughed and laughed.
Next. Kevin came back from the bathroom and told me, "there was an incident in the bathroom". For details I will keep private, he peed a little on himself and his shorts. He washed them in the sink and given he was wearing quick dry material shorts they dried quickly. Good thing I had him change his shorts, because had they been his khaki shorts they would have been an issue.
Next. We were all gathered around Jack and we had a pretty large crowd there. Zach, Patty, Kevin, Kathy, Jack and I that I can remember. I think maybe Stacey and her Kevin were there. Anyways, Zach gets a call from Grant. This is what we hear:
"Hey Dad. What? You got a cramp? Your junk fell out? You did what? Pissed on yourself? What? You took them off in the parking lot? You aren't wearing any shorts?"
Yep. Grant got a cramp trying to go to the toilet and peed all over himself. We made jokes endlessly after that.
We had the case worker come in and she said she was going to get with the hospice folks and let them know we wanted to go to Hoppi's House which is a really nice place to go. To die. They told us the representative from there would be back to talk to us around 1-2pm. Great. That could give us some time to go home shower and change and get a night time bag and get back.
Before we left, Kevin and I went for a walk to clear our minds and came back to get Kathy to walk too. Being in a controlled air room watching a loved one die is so exhausting and we needed some air and room to breath.
Kevin and I left and we were completely delirious. Nothing made sense. We felt like we were in another dimension. It didn't make any sense at all. I hardly remember the 45 min drive home. We got home, showered, threw a bag together and left again. We went to Chipotle for some food on the way back. We stepped out of the place and had no idea whatsoever where we were or the car.
We made it back to the hospital for the Hospice lady to talk to us. We came back to the dungeon full of people. It was so overwhelming. Sean, Araby, Bhodi, Rhyker, Stacey, Kevin, Grant, Kathy, Patty, Jack followed soon by Patty's 4 grandchildren and great-grand daughter. I was honestly petrified Jack would pass with all of these people and not be able to pass peacefully. Soon Vern and Barb were there too.
Eventually the Hospice representative came to talk to us about the place and the paperwork. This was such a hard time and so many people were in there. Kathy had the devastating time of having to sign the paperwork and they would arrange for transport of Jack to the Hoppi House. We moved all the stuff from the room to the cars and moved cars closer together so we could follow the transport in Jack's car and our car. It was so weird moving everything again to the place he would take his last breath. We knew that moving him there was the best and right thing to do for his comfort but it was also so hard because we knew this is the place he would make his journey to eternal life in Heaven.
The time came for transport. My over protective self wanted to help transfer him from the bed to the gurney. Of course they don't know I move humans for a living, so they made me back up. They said that he wouldn't be on oxygen and moved him. The part of me that wants to save him said, he needs oxygen and is painfully followed by, I can't save him. I can't. The extent of the stroke is too much. I had to repeat this multiple times to get it to stick.
We followed the transport to the Peppi House. We got there and so did the huge crowd. We had Stacey, Kevin, Grant, Kathy, Patty, Patty's grandchildren and great grand-child, us and Jack.
We had some paperwork to fill out, which was simple paperwork but it was too much for Kevin and Kathy to handle. Kevin was able to write KAT and couldn't finish her name. I took over the paperwork which was a sheet called "About Me". Jack's favorite sports, favorite positions to sleep, favorite food etc. It was exhausting to fill out ONE page of information with about 10 questions. But, the dynamic trio did it.
We were escorted to his room. 1005. The room was lovely. It was set up in a way to make you feel you are at home. The staff is the most compassionate humans I have ever encountered in my entire life. Amazing. Our nurse even changed out his lanyard for Cubs after reading his "about me" sheet. Every person who was with Jack talked about his favorites. They always talked to him like they knew him. So endearing and loving. He had a hand made quilt on his bed. He had a patio. He had a lot of natural light and not the harsh glare of fluorescents. It was calming. They had a couch that made into a bed. Chairs that made into a bed. An endless supply of coffee and snacks. Home.
Something to note. Jack under no circumstances wanted to go home to die. He didn't want to be in anyone's home to die. This was the closest thing to home and comfort.
Eventually everyone filed out and the subject of dinner came up. We had had enough Cane's and Kneaders to sink a ship. We decided it started to sound like a law firm. The amazing part of this place, they happened to have a green book full of menus. We selected a place and placed our orders and Grant and Zach went to get it. Here or maybe sooner is when the Mexican themed food began.
We had at this point, Patty, Grant, Kathy, Zach, Hugh, Lindsay, Kyla, Anson, Stacey, Brian and Jack.
They had a nice family lounge area with a table, fridge and seating area. It was really nice and accommodating to our group. We all ate and had Johnny her grandson take Patty home. Patty was really struggling and not eating and we were so worried about her. She was persistent with having Jack at her house and it was hard for her to understand this was Jack's wishes and his families wishes. We also had her grandchildren, Johnny and Richard on board to help with keeping track of her and driving her.
The end of the night came and it was the dynamic trio. Kevin, Kathy and I. Here we are again watching Jack die. I have been on high alert now since Friday morning, it is now Saturday night. We settle in our chair-beds and couch bed around 11pm or so. The staff insisted on making the bed for us. They are so kind. We had Kathy lined up next to Jack, then me and then Kevin on the couch-bed. It was longer and thought he would be the most comfortable. We settled in with idea to take shifts and we all just conked out. I lied there listening to Kathy snore, Kevin snore and Jack snore. I chuckled with like father like son and daughter and wondered who was the loudest. But I also was thankful they were getting sleep. I couldn't sleep though. I couldn't shake that we were waiting for him to die. It was so heartbreaking.
The night nurse came in at 1 am to check on him. Check his increasing body temperature. His decreasing lungs and powerful heart rate which was increasing more and more. She was so gentle. She spoke softly to him. She sighed softly at the signs of the end coming. I was watching an Angel. I climbed out of my chair-bed to talk with her and thank her. After she placed the ice bags on him again and gave him more meds to comfort him, it was just us. Jack and me.
I cried. Deeply from the depths of your belly that you laugh, I cried. I cried as silently as I could because Kathy and Kevin needed sleep. I cried from the loss. I cried for my inability to save him. I cried for memories I have. For Cecilia. For every single person who came to see him. For every person who loved him, who knew him. I cried for the love I have for him. The role model he is. The father he is. The husband he was who cared so deeply for Jackie when Alzheimer's took her mind. He painted her nails. He made her meals. He changed her. He dressed her. He bathed her. He took care of her. He emulated love a husband has for his wife. It was what movies are made of. Why romantics write. And he is leaving this world for the eternal love with his wife. It made me question everything in life. Why a thousand times over. Why can't we live forever. I thought of if Heaven is real, is he with Ben? Are they playing dinos on the floor. I never got to thank him for what he has done for Kevin and what a wonderful father he is. I was full of regrets of conversations not had. I was encompassed in sadness for Kathy. Losing her mom was crippling and this is unimaginable. I stared at her and wished and prayed for no pain on her. I couldn't hold back the sobs watching Kevin and knowing that all of this has erupted emotions and memories of Ben's last days and watching his idol die. I can't take this pain away. It is nothing I can fix or make better. It makes me feel helpless and inadequate because I can't. I love this family so much and it is killing me to see their pain. I am a sponge and I soak it up. I soak up love. Pain. Sorry. Happiness. Sadness.
I sat there at his bedside for I have no idea how long and climbed into my chair-bed and cried myself to sleep. I remember waking at some point seeing Kevin grab the fruit loops and thinking he had a handful and went to bed. He woke up at 5 and had some for breakfast, but to me it seemed the middle of the night. I decided to get out of bed seeing that Kevin was gone and went to the family lounge to find Patty and Kevin. It was around 630-7 am on Sunday. Patty woke at 4 and showered and drove to the place. She left Johnny a note so he knew she was safe.
We let Kathy sleep longer and she joined us and the day began again. Coffee and coke on board we made a call to Grant for breakfast burritos. The burritos came with Grant and Zach and we all ate, Patty had half of one. As the day progressed, visitors came and went. Thoughts and condolences and moments shared. He was bathed and they shaved his face which was sweet. Bob and Sandra Rohen came and visited him and we were going to go home spend time with the kids after they left. When we left we told him it is okay if you leave while we are gone. We love you and we are okay.
We left there and decided on a some food from Jimmy Johns. A couple moments happened that were funny. First, we really shouldn't have been driving. Kevin nearly hit someone backing up after at a Walgreens to see if they had Big Hero 6 movie we have been looking for the kids. We got the Angry Birds movie instead. Then we went to the sandwich shop and we couldn't even make a decision on food. We finally did and Kevin said no lettuce or tomato. They gave us our sandwiches and the guy says, "Sir, I am so sorry." Kevin thought, did she tell them my father is dying? The kid says, "there is lettuce on your sandwich, I will remove it." He sounded like a person who says sorry for your loss.
We got home and got the kids and we decided to "watch" the movie and I made some snacks for dinner, some pizza things and we sat and watched the movie and let time pass by. It is a weird thing. When we were home we wanted just be there at Peppi's House then at Peppi's House we wanted to be home with the kids. It was just so strange. We sent the boys off and headed out again. Another night of waiting for death to come so Jack didn't need to struggle anymore.
We went to the grocery store previously and bought things to settle in for the long haul with snacks Patty would eat and would sustain us vs eating take out again. We came 'home' to see that a ton of food was brought by a 4-H group from friends of Kathy and Grant. So much food. Added to our settle for the long haul. We had some pie which we thought was apple. The next day Grant had it and said it was peach? Apparently it was half apple and half peach. We arranged our chair-beds and couch-beds. We chatted. Dealt with e-mails and affairs and held onto Jack's hands. Monitoring urine output. Heart rate. Respiration rate. Waiting and not wanting, but needing him to not hang on any more.
Kevin and I talked about earlier if we all took a walk so he could die in peace. We didn't but we talked about it. Earlier in the day Patty had sometime alone with Jack to talk to him and say her goodbyes. She needed to reach a level of acceptance to say goodbye.
Jack had a moment with Kathy, Kevin and Ken before the surgery where he told them he had a good life and he loved them and if something were to happen, it is okay. That helped some with the blow of having what happened happen. Ken left right after surgery knowing he was going to be okay, I am glad he was able to hear this conversation with his dad to help bring him peace.
We brought Speedy back hoping it was that that he needed to let go. We thought Lindsay coming is what he needed. We thought prayers from the preacher was it. We thought a thousand things thinking this is what he needed to let go. Kevin shaved his face, he hadn't shaved since Sunday of the week prior.
I told him before bed that I got it. I will take care of Kevin and Kathy and they will be okay. I will make sure of it. Each time we left him we didn't say see you soon, we said we love you and if you need to go while we are gone, it is okay.
We settled in our line-up. It was around 1030-1100. Kathy positioned herself with her hand on Jack's chest. I laid listening to the clock tick and Kevin on his side. We all fell asleep at some point. Jack's breathing had settled into a calm rhythm. His urine output was low. His heart rate seemed it was getting more erratic. His body temp was all over the place. But, it had been this way for awhile. Not a real indicator.
Somewhere around 1230 ish, Kathy shifted position and felt he wasn't breathing anymore. She woke me with rubbing my arm and I rolled over and woke Kevin then got the nurse. The nurse came in and listened to his heart as we all hung onto one another and she listened to his heart beat. It faded away as we were there and the great man, died. It was a moment of relief that he was no longer laboring to live these last horrible 72 hours anymore. At 1248, August 22, 2016, our beloved Jack, father, husband, mentor, love... died. It was a moment of what is our next step.
This journey is about steps.
Step 1. Admit to hospital. Step 2. Surgery Step 3. Recovery Step 4. Not doing well Step 5. Tests Step 6. Results Step 7. Shock Step 8-10 move rooms Step 11. Hospice Step 12. Death
It is like a 12 step program. Now was the step of the mortuary to be called to get Jack. They came to get him a few hours later. In that time, slap happy drunk delirious dynamic trio was in action.
Kevin put on his Dad’s hat which made him look like a young man. It made me so sad to see him with the hat on and feeling the great loss. He claimed that hat as his own; it was his connection to his father.
When there is a death at work, people open the door so the soul can leave. I said, I should open the door. Kevin said I could leave the door open. I said I didn't want Jack to get eaten up by mosquitoes. Oh.
The nurse came in with the paperwork for the mortuary and we all thought she said, “here is the release form for Heaven”. She said “Heather”. We thought all you need is a letter, hmm.
The three of us were standing there and I thought I heard Kathy say, “He doesn’t look dead.” I rubbed her arm and said oh honey I am sorry, he is dead. She said, I know that. She said, I said Dad. Oh oops.
I found it interesting that Jack's hands were in the same position with his fingers curled under. I went to the side of the bed and looked at his hands with his wrist cradled in my hand and Kathy walked in thinking I found a pulse. Freaked her out!! Got her back for the leg lifting thing!!
When Kathy talked to Lindsay earlier right after he died, Anson made a squealing/screeching sound and I didn't know what the sound was and I looked at Jack really confused. I thought it came from him.
Kevin went to the bathroom and while he was in there I went for more coffee. He came out and both of us were gone. He thought I got freaked out and left.
I am sure the staff thought we were a bunch of nut cases. The reality is, we know death. We know loss. We know that you can either get swallowed up in it and cry uncontrollably or you can find light and laughter where you can. The three of us were operating on mission, adrenaline and numb shock.
Next step, we packed up all our things and went home to Jack's house. It was so surreal coming into the house with all our stuff without him or waiting to see what room he was in. It didn't seem logical to be in the house at 430 am as people were getting ready to leave for work or who were sleeping and their lives were untouched by death, sadness, loss, grief.
We put all the food away. We ate a snack and considered just staying up. We decided to go to sleep as that was the logical next step. Kevin and I slept until around 9, which seemed late. We woke confused and unsure of where we were and what was going on.
The week ahead was full of what do we do next and how do we move forward. It is a blur of a week. Planning, organizing. Signing paperwork for cremation, for death certificates. Phone calls for notifications. Emails. Obituaries. Financial organization. Finding things tucked away that make us laugh, make us cry.
Through this whole week one thing has remained the same. Love. Love for my family and helping them through this time of their lives that shouldn't have to happen. Safe place. As soon as I get home I don't have to be strong anymore and I can cry. It is like a faucet is turned on and I can't stop crying. Food. I think I gained 5 pounds.
Sadness too has remained. I am sad each day. It doesn't go away. In this process it has helped me to understand Kevin more and his grief. I haven't experienced a loss of this level before and how to help those around me. I am a fixer and a doer. This has completely thrown my world upside down. I know that each day it will change and get easier.
I will end this with what I know about grief. It is ugly, perplexing, funny, sad, upsetting, anger filled and ever changing. I could list a list of things I hate and it pales in comparison to grief. The ordeal has brought Kevin, Kathy and I closer together. There isn't a thing I wouldn't do for them. The one thing I wish I could do, I couldn't. I couldn't bring Ben back or make Jack better. I am not really okay with that, but I accept there are things you can control and things you cannot. I will support and do everything I can to help them through this. I will make lists and complete lists. I will write. I will make some of the most inappropriate jokes to cover for my own insecurities if it makes them smile. I will hold them tightly and I will cry. I will allow myself to grieve not just for Jack, but for them.
In two days we will have his Celebration of Life. A wonderful party. Personally, I will celebrate John R. Trapp everyday. I love you Jack. May you keep us smiling and having great fun with Ben and making Heavenly Memories with Jackie.
