I kept dragging my feet on Hospice, but it's official.
Friday I knew Jared wasn't doing well. I felt like he probably needed Hospice, but I felt such a huge sense of guilt in making the decision. I felt like I was choosing to kill him. That's not a feeling you understand unless you've lived it. I finally decided to text all of his family so they could ease my burden. The feedback was that they supported my decision 100%, and that they felt I couldn't keep doing what I was doing. So that made me feel better, but I was still dragging my feet. My mom took most of my kids home for the weekend, so I felt like I could focus my attention completely on Jared and his needs for the weekend. So I held off. Saturday I called my new friend, Diane, who I met through Jared's sister. Her husband died of brain cancer five years ago. It was so good to talk to someone who's been in my shoes. She really helped me with decision-making and gave me a lot of advice.
Saturday night Jared was up all night long, wide awake, and really fidgety. And he kept making this deep hiccup sound that I could tell was painful. I didn't sleep at all. Sunday morning he really seemed to be suffering. He has a really difficult time communicating now. I have to get right in his face and ask things a couple times before I get a response. He just seems gone. I asked if he was suffering, and he nodded. After a few questions, I found out that he felt a lot of pressure in his head. That was the moment that I realized things were out of my hands, and that by not putting him on hospice I was actually making him suffer. So I gave him Percocet to make it through the day.
I had Brynlee home alone, and knew I needed to talk to her about the situation. I really wanted to talk to my kids separate so I could address individual needs. Brynlee was shocked. (Up until now, my kids have actually been doing really well. They didn't understand the situation because their dad has been in and out of the hospital a lot, but mostly because of other issues - infections, blood clots, etc.) She asked me if there was any chance at all that he could be around in a year. I said, "Yes, there's a chance. But that would be a miracle." Later that night she told me she believed in miracles. I told her that I did, too, but that if we didn't get one, we'd be okay. The other thing she asked that broke my heart was, "Mom, why did Jesus give dad cancer? Is it because he was bad?" I'm glad she asked, because I don't want my kids ever thinking that and not having that question addressed. She was very sweet, and I think she'll be okay. She has a very mature understanding. I told her I was very proud of her for the way she's handled these past two horrible years.
Monday morning I talked to Jared and told him that I really thought he needed to have a nurse come to give him his pills through an IV, and I wanted to get him some morphine for relief. He agreed. I also told him about my conversation with Brynlee. He doesn't seem all there, but I knew he understood because he got teary-eyed. That afternoon I called hospice. I broke down on the phone. It's not an easy call to make. The nurse came out that afternoon and mostly just inserted a catheter. After she left, I was trying to talk to Jared and he got this horrible look on his face. I asked what was wrong - he seemed to be in a lot of pain. A minute later I turned around to see that Averie had yanked out his catheter!!! I felt SO bad! Jared and Averie are just not a great mix right now.
Today has been the worst day of all. He looks absolutely miserable. When he's awake, his eyes are barely open. I have to get right in his face to talk to him, and most of the time I don't get any response. Now that he has his morphine he's been sleeping and looks much more peaceful. They also gave him Ativan. They said that once your body starts shutting down, you start to panic. It's an anti-anxiety medication to help relax him. He looks a lot more comfortable now, so I'm happy for that.
Today I took Jace for a drive and broke the news to him. He had a really hard time and cried a lot. Tonight he seemed to be doing a little better, but I just feel so bad for him. Jared is his best friend in the whole world.
I've survived this past few days completely and totally thanks to Xanax. Without it I would've been a total mess.
At this point I've been told mixed things. I've heard that he's gone downhill so quickly that he could go really fast, but I've also heard that his vital signs are still strong, so it could be a couple weeks. Either way, days are numbered. It could be tonight, or it could be days. I think everybody who has seen him the past two days all feel the same way - the quicker the better. He's suffering. And it's awful to watch.
Today is officially the two-year anniversary of his diagnosis. We should be celebrating, but it's hard to celebrate when he's slipping quickly before my eyes.
