Good morning! Alexis here, and I’m continuing our birthday bash with some cake for breakfast. More specifically, cupcakes. More specifically still….cupcake toppers!! These
Everything is more difficult now. Getting up in the morning, going to work, going to Bar, being present with my friends….breathing – It all takes so much more effort than it did before. I miss him so much. So fucking much. He was my epic companion, always making me laugh, always making me smile, always supporting my every thought. I keep wanting to turn to him or text him or call him and tell him a thing. But I can’t.
I’ve been told I’m doing remarkably well, but I don’t know what the benchmark is and sometimes even that is hard. Am I doing too well? Am I grieving wrong? I’m just trying to stay ahead of the pain by continuously moving forward. It’s my way. It’s all I know. Stack up the things until you fall asleep, wake up, repeat. I’m definitely on a kind of auto-pilot and I know I probably seem….different. I don’t know how to describe it other than hollow. The world keeps moving, and I keep moving in it, but it’s wrong somehow now and I can’t shake it.
Fake it till you make it, right? I’m told it will get better, but I think that’s the wrong word. Less awful, maybe.
It all seemed to move so fast. We knew he was dying…but it still came on us so quickly. One minute he was having blood work done at Florida Cancer, joking with everyone and being his usual happy un-complaining self and then we were meeting with Hospice and signing paperwork and within hours my world shattered. I took him back for a nap and when he woke up he was having a full blown panic attack. He couldn’t breathe, he was scared and that made it even harder to breathe. I put him on some oxygen and tried to calm him down and then we called the night hospice nurse. He was great, really sweet and helpful like they all were, but our kit with the morphine hadn’t shown up yet because they weren’t going to get started with things until Monday. It was Thursday night. Almost Friday morning.
The nurse got seth some more of his own meds, got him settled and then left. About an hour later all hell broke loose. Seth couldn’t be convinced not to get up. He kept insisting that he needed to use the bathroom, and no matter how hard I tried to convince him that between the ostemy and the catheter, he literally didn’t need to get up and cause himself distress again and bring on another panic attack.
He wouldn’t listen. He kept trying to get up, but he couldn’t on his own, so I tried helping him. When he eventually came to the conclusion that I’d been right and he didn’t need to use the bathroom, he tried coming back to bed. He fought my help, but he couldn’t walk on his own, so it just resulted in us both falling. Hard. That night definitely ranked up there with one of the worst of my life. He couldn’t be reasoned with. He begged me to get him back into bed, but he fought my help when I tried. I eventually made it work, but God only knows how. It was impossible, stressful, horrible, terrifying.
I looked down and saw blood in his catheter bag and I knew. I was losing him. His kidneys had gone from failing to failed and we were done. The pain meds were no longer being filtered through his blood and he was literally going mad from it. He was confused, stuck on that one thing that has been plaguing him since this whole thing started, the bathroom, and determined to get there no matter what.
Finally I got him into bed and held him as he moaned and squeezed my hand and tried to ride out whatever he was feeling. I knew the night staff had done all they could, and I didn’t want him moved to the hospice home, so I waited until 7:30 and told them that I knew the regular shift was about to start and that we needed to see our nurse right away. I texted Paul and Chris to see if someone could stay with Seth while I picked up his Aunt and instead Chris came to stay with Seth and I while we waited on the hospice nurse and Paul went to pick up Michelle at the airport. Much better idea.
Even the two of us together couldn’t manage to maneuver Seth to be able to take his pain meds, but once our nurse arrived she got some in him and called in the morphine. Everything was a blur. I went to get the morphine, we ordered the hospital bed, people were in and out, people were praying, people were cleaning, my husband was dying.
At some point later that day I got a hint of my husband back. The morphine had kicked in enough, but he wasn’t sleeping and he was sweet and child-like with us for a few hours. I’ll cherish those interactions for the rest of my life. The ‘I love you’s’ we shared, the kissy faces he made at me, the ‘hey Paul’ with that sweet awe on his face as we moved him into the hospital bed. I’d been terrified that my last ever real moments with him were going to be from that awful night of fear and frustration, but he gave me the most beautiful gift. I asked him if he was in pain, and he just smiled and said ‘no, not really’. That’s the first time he could reasonably say that in at least 4 years.
He fought up until his last breath. When we gave him morphine it was like spinach to his Popeye. He tried to get out of bed, tried to lift himself up, tried to wriggle his legs out. When someone held his hand he tried to use it to leverage himself up. He wouldn’t give up. Even his last breaths were a peaceful struggle. You could see how desperately he didn’t want to leave us. We told him it was okay. We told him he’d done enough for us. We told him he’d suffered enough. But still he fought.
There were tears, there was laughter. We even teased Seth for startling us all with dying..and then breathing again…only to really die a few moments later. He wanted to go out the way of Lord of the Rings…with several endings. I held my hand over his heart and it wasn’t beating. Mine probably wasn’t either.
The whole process of being processed is a strange one. Kind men in dapper ties came for him. They loaded him on a stretcher with a flowery quilt and matching pillow. It looked like he was going to a bed and breakfast. The whole night was surreal.
So was the following week. I did some things to some rooms with a hammer. I purged a little. I cleaned a little. I cried a little. I didn’t sleep much, but I ate when people put food in front of me. Numb slog. That’s what Ree called it. The memorial was perfect. I am so grateful to our friends who helped make it just right. Dani and Charlie lent us their home, Chris put together a beautiful service, Paul made the house a shrine to Seth with an abundance of photos, some of which I’m not sure I’d ever seen. Brenna flew in so that I had my full line of grief matrons at the service. I was able to speak about him a little, though I’m not sure how well. The night went long and we had a slumber party with the girls at my place afterward and fell asleep watching Frozen.
The days just ticked by after that. Once after another. I went back to work the Monday after the service. (after a long morning of missed flights and chaos) and everything was strange and foreign seeming. Still is. I have to leave Bar a little early a lot because I find the stretch at the end a little too quiet and peaceful and I start to cry. I’ve dyed my hair pink. I’m refinancing the house. I’m getting things together so that the struggles are lessened as much as possible. I’m going to Philly for Christmas and I’m going to try not to fall apart on 12/11 and I’m just going to keep moving until things don’t suck anymore.
One minute at a time.