I live about four hours away from my family. This creates a unique set of difficulties for me as the oldest daughter. As my mom was the caregiver for my dad, I could not provide her respite for a day because I was just too far away. This caused my mom to have a lot of stress since she rarely was away from my dad and when she was it was only for about an hour or two. I am also kept in the dark of minor things that may be going on because they don't want me to worry about them. This is frustrating at times.
Other things I deal with personally is guilt because I am not there to share the load with my sister and brother. They ultimately pick up the slack on helping my mom. I sometimes wonder if they resent my not helping out. My sister and brother are polar opposites, so they sometime clash a little bit. I am kind of in the middle. I am compassionate, but no way near the extreme my sister is. I am also logical, but again not to the extreme of my brother. I am kind of middle ground where both feel safe to bounce things off me and I can bridge the gap between them.
The one interesting note I can recall while we were at the hospital during the last three days of my dad's life was that I really felt like an outsider even though I truly was involved with everything, I just did not feel I should have a lot of input because I am not part of the day to day life that my family lives through. At times it made me feel uncomfortable. Not sure if it is bad or good, but I hope to change things going forward so that if I am ever in a similar situation I will not feel that way again. It was truly an internal issue for me because none of my family did anything to make me feel not part of what was going on.
The chain of events: I was on vacation in Duck, NC, in the outer banks with Dennis, my son Aaron, and his girlfriend Celeste. It was just a long weekend trip, getting ready for the summer. We had two one bedroom condo's right on the beach of the Atlantic Ocean. On Friday night, May 1, we had gone to dinner to celebrate Dennis double nickel birthday. We had a great evening. On Saturday morning, I awoke early because the sun was shining in the window so I got up and made some coffee and was sitting on the couch reading and my phone rang. It was my brother Dave. They had just rushed my dad to the hospital. It did not look very good for him. They were not sure what was wrong. But he wanted to let me know in case I wanted to come. I explained where we were and said I would talk to everyone and decide what to do. I was scared. My brother is the least emotional of all of us kids and I could tell he was about to lose it and it was bad. I hated that I was currently ten hours away and not my normal four hours.
I went in and woke Dennis up to tell him what was going on and so he could give me some logical support as I was feeling like an emotional wreck at the moment. We decided we would go to Akron and needed to talk with Aaron and Celeste to determine how we would do this. After talking with the two of them we all decided they should go ahead and stay for the rest of the weekend and Dennis and I would rent a car and drive to Akron. I sent a text to David to let him know we were on the way and would get there in about 10 hours (9:30 pm Saturday night). As we were driving Dave called me again and could not hardly talk. They were taking dad into emergency surgery. He had suffered an aneurism in his aorta behind his stomach. They did not know how long the surgery would be, nor did they know if dad would make it through the surgery.
This escalated my fear tremendously. My brother just doesn't cry and the fact that he could barely speak to me told me how grave the situation really was. Thankfully at that moment Dennis was driving because I don't think I could have kept driving if I had been the one driving. We kept going. After about four hours we switched drivers because Dennis needed a break and needed to rest a little bit. I got the lucky clip of the drive around the outskirts of Washington D.C. for the next three hours. My sister called to say dad was out of surgery and was in critical ICU and stable at the moment. I let her know we were still about four hours away and would get there just as fast as we could. Dennis drove the rest of the way to Akron.
When we were just about an hour away Darla called again to say they needed to go back into surgery because there was a lot of bleeding going on in dad's abdomen and they needed to see what was going on and what could be repaired. I was again stressed and thankful not to be the driver. I was sure hoping to get to see dad before they took him back, but it was not looking to promising at this point. I got to the hospital at 9:30 and David was outside waiting for me. He took me straight upstairs to see my dad. It was not until 12:30 am that they took dad back for surgery number two.
In surgery two they found that part of his bowel was dead and needed to be removed. They also explained the severity of what happened inside my dad. When an aneurism ruptures it is the equivalent of a bullet going off inside of the stomach so basically everything in his gut was shredded and they could not even make out what a lot of it was. They packed his stomach with gauze and taped him up but pretty much left his stomach open because they felt they would need to go back in at least one more time, possibly more than once. We all spent the night at the hospital because dad was pretty unstable and we were told we could spend as much time with him as we wanted. Another indicator of the graveness of his situation.
About 7:00 am they were getting ready to turn over to the day nurses. Dad had stabilized and so we convinced mom to go home and take a shower and get fresh clothes on and then we would get her breakfast and then bring her back to the hospital. Since she was not really getting sleep and she wasn't eating, we knew we had to focus on her as much as we were focusing on dad. She did feel refreshed and ready to face the long day ahead. We also needed to pick up dad's medical power of attorney and his living will so the hospital could have a copy for their records.
So many people stopped by the hospital over the next few days it was a blur. Many of them I knew from growing up there but many were new to me since I have not lived in the area in over 25 years. We also talked just among the family. Dad had made it clear to all of us multiple times that he did not want to be on machines to live. We were all in agreement that he could not remain on them long term, however mom was not ready to make the final decision because she felt if they removed the ventilator it would be like she was killing him and she could not do that. We all decided to wait a little longer to see how dad did. Mom did go ahead and fill out the do not resuscitate order should he become distressed. After a long day at the hospital we convinced mom to go home for the night and sleep.
I gave Aaron a call, he was driving home from North Carolina with Celeste. I knew both of them were on vacation on Monday and I told Aaron if he wanted to say goodbye to Pappap he should come up to Akron tomorrow because I didn't think he was going to recover. He said he wanted to come and would be there. He drove our car. Dennis decided he would drive home with Aaron so he could go back to work on Tuesday.
I also had been reaching out to Nathan since Saturday. This was such a better experience for he and I than when his brother died eight years ago. When Ian died, we had to call the prison, and work through the chaplain and talk to him and tell him what happened. Everything was after the fact. With dad, I was able to email him as events happened and then he was able to call us multiple times and communicate with us. He was in the loop the entire time that decisions were being made. I asked him if he wanted me to put the phone up to Pappap's ear so he could say goodbye but he didn't want to. He said the last time Pappap had seen him it was a visit outside on a beautiful day and they had laughed and laughed. Pappap knew how much he loved him and that was the memory he wanted of Pappap. I was at that visit and agreed with him completely.
On Monday Aaron came up and spent several hours with Pappap and he was so glad that he did. He knew that he was not going to recover when he saw him. It was hard on him but I think when it was all said and done it helped him getting to say goodbye while his body was still warm. One thing he said to me in private before he went home was how long are they going to leave him like this. I told him I thought it would only be a matter of a couple more days. He just couldn't stand seeing him like that. He and Dennis went home that night.
At some point on Monday I had reached out to my manager and told her what was going on. She told me to take the time I needed and just keep her up to date on his progress. We exchanged texts off and on as people were concerned and she wanted to make sure I was OK with anything being shared and who it was being shared with. She was also very concerned about me. She had just lost her father last summer so she personally knew what I was dealing with. I really like her as not only my manager but also a friend. She is fantastic.
Dad was swelling up all over his body, but especially in his abdomen. It was scary how big his belly was swelling up. He had gained over 70 lbs since he arrived on Saturday morning. 70 lbs in just 48 hours. At one point we thought we were going to lose him. His blood pressure kept going down and down because one of the medicines he was getting via IV did not get filled from the hospital pharmacy due to a computer glitch. I could see the panic on the nurse's face as she tried to keep the medicine going into him even though it seemed empty. Another nurse brought the medicine in and they quickly hooked him up to the new bag of medicine and his blood pressure went back up. We also learned on Monday that sometime after dad's second surgery he also had a heart attack.
Mom was still struggling with the life support issue so we asked her who she would like to talk to that could help her deal with the feelings she was having. She wanted to see her pastor and an old family friend, Faith. We immediately reached out to both of them, it was about 7:00 pm and both of them came over right away to talk with her and encourage her. At the end of the evening, mom still decided to wait a little longer as they were talking about going in for a third surgery possibly in the morning. She was more confident that she could make decisions once the time came. We convinced her to go home and sleep for the night. The hospital had her home and cell phone numbers if anything changed and we needed to go to the hospital.
At 10:00 one of the surgeons came into the small waiting room to talk to us. He was so kind and he talked to mom explaining that dad was not responding to anything they were doing for him and they decided not to go back in and operate on him. There was a one in one million chance that he may survive what he was going through, however if he did survive it that did not mean he would have any quality of life whatsoever. Mom told him that she was ready to let him go however she just couldn't stand the thought of taking the ventilator out or that he would be in pain when he died. He told her we did not have to remove the ventilator and that they would keep him on his pain medications so he would not feel anything. What they would do is no longer give him blood (they had given him around 50 units or more already) and they would stop the medicine that was keeping his blood pressure up. What would then happen is his blood pressure would keep getting lower and lower and his heart rate would follow and eventually his heart would stop. Once they checked him and made sure there was no heart beat and no pulse they would then remove the ventilator. Mom agreed to that.
We had lots of questions about how long it would take, etc. He said it thought it would be later today. We were concerned because Mom was getting shaky (diabetes) and she hadn't eaten yet that day. He told us to take her down for breakfast that nothing would happen immediately. We got back upstairs around 10:45. I had reached out to Dennis, Aaron and Celeste to let them know what was decided and to let them know I would tell them immediately once he had passed.
When we got back to the room the monitor was turned off. It initially displeased me because I could tell how he was doing by watching the monitor. After a few minutes though I realized that if the monitor had been on we would have spent our last time watching the monitor and not being in the moment with dad. Our nurse was at the nurses station monitoring his heart rate for us and she would come in and tell us once his heart had stopped. It went so fast after that. Even though the monitor was not showing any of his vitals, it would still alarm when things were not going well. Not an audible alarm, but a blinking light. As each of the medicines ran out she continued disconnecting them one at a time but staying out of the room as much as she possibly could.
We were all at dad's side, Mom, me, Darla, Dave, Cil (Dave's fiance), Gabriel, and Dave (Darla's fiance). After a very short while I noticed Dad's hand changed in mine as I sat there holding it. It became very clammy almost instantly and I now believe that was probably when his heart stopped. Only a moment later the nurse came in the room to check and made sure there was no heart rate or pulse and she confirmed my thoughts that his heart had stopped and she was so sorry. She then turned off the ventilator and left us alone. A few minutes later his first surgeon came in the room and also checked for his heart beat and then she officially pronounced him dead at 11:30 am. It was very peaceful and he felt no pain. We could stay with him as long as we needed. After just a short time we noticed his color was changing to a dark gray and mom said she did not want to see him like that and so we left and went into the small waiting room to cry.
I went out and found a quiet corner and let Aaron, Dennis and Celeste know he had just died. I also sat down and wrote a very long email to Nathan telling him everything that had happened that morning including letting him know Pappap had died. He called me a little bit later so I could talk to him and tell him everything. Mom had to answer some questions for the hospital and they provided some fruit and crackers for us. After a little while we went over to Dave and Cil's place. I called the funeral home to set up an appointment to meet with them Wednesday morning at 10 am. I cannot remember anything else about Tuesday. I am guessing mom called Michael Kelley about officiating, and my cousin Joe Ellis about using his church for the funeral on Saturday. We also determined everyone could come to Dave's house with food and also for the meal after the funeral. I am sure we planned the service and songs but I just don't remember the day, it was a blur.
I have more to write, but I am going to have to come back to this. I had no idea I had so much in my head and in my heart to get out.
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