The Long side of my family does a weekly family email. This is what I wrote for it a couple weeks back:
My sister Rebecca made a blog post about my Dad. I read it a few minutes ago and it has finally pushed me to write some of my own feelings down. Some of what I remember. I know that I haven't been contributing much to our family emails, and the past couple weeks have been especially difficult for me.
This year has been hard on me emotionally. On March 28th as you all know I had a miscarriage. At the beginning of summer Nelson, Daphne, and myself visited my family in Louisiana. While we were there my father was hospitalized. That was the beginning of the end as I look back. After that hospitalization my father’s time spent at home began steadily decreasing. More often than not over the next few months when I called my dad he was at M.D. Anderson in Houston, TX.
Around the time of my birthday I had talked to Nelson and decided that I needed to go down and spend some more time with my dad. My other siblings were all trickling in at different times as we collectively realized how poor my dad’s prognosis was as the hospital stays racked up. Nelson and I were babysitting his little cousins and we had spoken with his aunt and uncle about my plans for visiting. They surprised me with the airplane tickets for my birthday. I was originally planning on coming in October, but after speaking with my mom we decided on November because she was going to be able to get more work off around her birthday. I had a second miscarriage on the 27th of September. In October it appeared that my dad was really not doing very well, his bone marrow’s function was down to basically nothing and I panicked for a little while thinking that maybe I was coming out too late.
I flew out on November 3rd and my return ticket was for November 12th. With Daphne in tow I flew into Houston where my brother Eric and his wife Cindy picked me up from the airport. They had just decided to drive down from North Dakota to spend time with my dad and would also be staying at my sister Rebecca’s house.
I didn’t see my dad immediately. We had a little birthday party with my mom at my aunt and uncles home and I visited all of my grandparents. I saw him, I believe, two days later. My sister Rebecca prepared a sack lunch for everyone and we (Rebecca, her three kids, my brother Eric, Cindy, and their two kids, Daphne and myself) went to M.D. Anderson. My dad was feeling up to it and we all went up to the top floor’s observation deck to have lunch with him (mind you he wasn’t actually allowed to eat any of our food). I remember Rebecca feeling a little bad as we all ate in front of him. My mom said after the fact that he didn't care, but was really excited that he got to see so many of his grandkids.
Before he came up from his room my mother sent my brother Eric to help him get ready. She had brought with her some yellow gowns, masks, and gloves for all of the grandkids to play with so that they wouldn’t be scared when Grandad came in with all of it on.
When my dad came in with my brother pulling his massive IV holder I got to sit down next to him for a little while. I had on a mask and the gown because I was afraid to pass anything on to him. He was cheerful and happy to see all of the kids. I honestly do not remember anything that we said.
The next time I saw him I went with just my mother up to his room. My sister Rebecca had agreed to watch Daphne (who was not allowed in his room). I brought with me a small gift I had gotten for my dad. It is a little model Porsche 911. I figured it might be something fun to look at in his room. I sanitized the outside of the box and then we opened it up so we could see how the doors, hood, and trunk opened up. We talked and he expressed his love for me and his concern over my happiness and future. He then asked me if I would like a father’s blessing. I said yes and he moved out of his chair and I sat there as he laid his hands on me and said a beautiful, sweet, prayer. I hugged him and then we were able to all talk a little while longer. I cried. Soon I needed to leave and get back to Daphne.
The next day my mother picked Daphne and me up from my sister’s (about a forty minute drive from the heart of Houston). Our plan was to do a little shopping, visit the Houston art museum (my cousin Haley, who works there, had mentioned at my mom’s birthday party that they had a Monet exhibit going on right then that I really wanted to see) and I was going to take my mom out to a birthday lunch. We went shopping for a bit and then carried on as planned to the Museum of Art.
We had a lovely time walking around, listening to the guided tour via these little hand-held devices and picked out our favorite pieces. I ended up buying us each a small magnet with our favorite painting and a little book about Monet. Not long after moving on to the other exhibits my mother got a call from my father that the chills had returned and he was not feeling well.
We left the museum and decided to simply grab some lunch at the hospital. I ate a pitiful chicken sandwich while my mom ate a turkey wrap. She went up first to see my dad. After a little while she came back down and took Daphne so that I could go up and spend some time with him.
When I got in the room he was in his bed. He had a fever and his face was flushed. He could barely keep his eyes open. I sat near the foot of his bed and talked to him. He told me that he was sorry, but that he couldn’t really talk much right now. I told him not to worry about that at all, that I just wanted to be there and talk to him. I told him about my favorite paintings of Monet, and the beautiful Matisse painting I saw and the interesting Picasso’s that I enjoyed. Then when I felt that he just needed to rest I asked him if there was anything that I could do for him before I went. He had me turn down the air conditioning a couple degrees and pour him some more water. I told him I loved him and that I would see him soon and I left.
That was the last time I ever spoke with my father.
The next afternoon Rebecca arranged for all of the kids to be watched by her husband Taber and we trekked up to the hospital to be with my mom. At this point my dad was sedated. Things had gone down hill that morning and as the fever and chills raged, fluid had built up too much on my father’s lungs to the point where he was struggling to breathe on his own. My mother was there with him when the panic set in with the nursing staff and was the last to talk to my dad before they sedated and intubated him. They had both agreed to the intubation without really recognizing how bad it meant. How slim the chances were that they would be able to extubate him etc. Later we were told that had he not been intubated that he would have passed away that night.
Seeing my father like that was so painful.
After spending the rest of the evening there we finally returned home when Rebecca’s son Trenton was refusing a bottle (he is only four months old and exclusively breastfed).
The next day my brother Mark, an ICU nurse, having been told that my father had been intubated took off work and drove over to Houston to see my dad. He picked me up and took me to the hospital. Right before we got to his room in the ICU they had removed 1.6 liters of fluid from off my dad’s lungs. I saw the jar of bloody fluid. While we were there with my mom we finally began to understand how close the end was. We spoke with two different doctors about my father to really get ahold of the situation. What it all came down to was quality of life versus quantity of life. Both doctors explained how there in the ICU their main focus was quantity of life not necessary quality. How they could do all of these things in an attempt to give my dad more days, but they wouldn’t necessary ever be good days. While we were there we discussed comfort care and how we didn’t want to escalate things because my dad didn’t want that. He had already been looking into what hospice care entailed. Earlier that week my mom and dad found out that if he was put on hospice care that he would only last a week. We had the DNR order put out, because my mom thought they (my parents) had already signed papers putting that into effect, but kept him on the antibiotics and blood, etc., that he was receiving currently. It was also at this time that his kidneys began to fail as his blood became more septic. The fluid that had been removed was re-accumulating around his lungs. I had Nelson cancel my return flight.
This is where things start to get blurry. It must have been that night that we told everyone how bad Dad was getting. I am not quite sure. But I know that Monday night my brother TJ had flown in, and Rebecca, Mark, my mom, and myself all sat in a family consultation room outside of the ICU and had a conference call with all of my siblings. My dad had been off of the sedation all day, but was not responding. Was not opening his eyes, or squeezing your hand or anything. We all had a chance to say how we felt about what should happen next. And I remember how we cried and my sister Kimberly was distraught that when she had visited him earlier that summer/fall that they really hadn’t had much of a chance to be alone and talk. And how we told each other that we loved each other. How we just didn’t want Dad to stick around only to live in a world of pain and seclusion. And it was decided then that everyone would fly in the next day and after we could all be together with my dad that we would move him to comfort care. We would have him extubated and take him off of the antibiotics and then just give him fluids and medicine to take away any pain.
Everyone arrived by 3pm on November 11th. My brothers surrounded him and gave him a blessing. We all surrounded my father and I held his hand after they extubated him. He was still breathing on his own, but we didn’t know how long it would be. My brother had his ipad and turned on a soothing Pandora station to kind of cut through the beeping and breathing. We took shifts getting food and being downstairs out of the room. It was a hard room to be in. I made sure that someone was always there to hold his hand when I wasn’t. At one point I got to be there with him by myself. I held his hand and talked with him, and sang him Primary songs. I told him what a wonderful father he was and how much I loved him. For a second there as I looked up at him I thought he had stopped breathing and I panicked. I no longer wanted to be alone with him. I was scared. I called my mom and she came up with a couple other siblings. It was my brother Mark who soon looked up at his stats and said that everyone should come up. We all stood around him and talked and laughed. Telling silly stories of things that had happened to us. I asked my brother Mark to put some drops in my dad’s eyes because they were looking dry, and he swabbed his mouth with some stuff to moisten it. And I held his hand.
And then a few minutes after ten, my brother Mark turned the monitor off of stand-by for a moment to look at everything and turned to the rest of us and said to be quiet, that this was going to be the last few moments. And we held onto each other. And I held onto his hand. And my brother said to look up and he took his last breath. And I held his hand. I couldn’t let go. I held it as it began to grow cold in my hand. I held it until someone, I’m not sure who it was, made me let go with a hug.
I will always wish that my dad had been able to wake up and talk to us. I just hope that he heard some of the things that we all said to him. That maybe he could tell that we were there. That someone was holding his hand til the end. That he was not alone. He went as my mom told him that he would, with all of his children and his wife there. I can feel some peace knowing that we were able to do that one last thing for him.