When the rain is blowing in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love.
I’d go hungry; I’d go black and blue
And I’d go crawling down the avenue.
No, there’s nothing that I wouldn’t do, to make you feel my love.
Some lyrics from the song we chose for our first dance. I had no idea how true that refrain would become for us.
He had been in bed for days. I don’t remember how many. Maybe a week. We hadn’t had a conversation in three days, because he wasn’t ever awake and when he was, his mind worked very slowly. I woke him up every 3-4 hours for meds. At night, every two hours. I tried to make him eat before taking meds, to keep him from being nauseous, but he wasn’t keeping much down and it was so much work for him to eat anything. He would fall asleep while chewing. He couldn’t get a spoon to his mouth without dropping it.
I fed him.
The amount of times he was getting out of bed kept decreasing. I knew that he needed to move around some each day, so I tried to make sure he walked over to our couch and sat up at least once a day. He was on constant oxygen. I would make sure the cord wasn’t tangled and that there was nothing on the floor to trip on between the bed and the couch before waking him and trying to coax him to get up. Despite being almost unable to make it on his own, he didn’t want me doing everything for him. So he unsteadily walked to the couch, me right behind him in case he fell. He fell asleep a minute after making it there.
He smelled like unwashed hair and vomit. After a couple days of going without, I decided he should brush his teeth. I woke him up to take meds and asked if he wanted to brush his teeth. He agreed it was a good idea. He started to get out of bed but could only take a couple steps before falling. I pulled a chair up to the sink and helped him walk over, then into the chair. I got his toothbrush ready and gave to it to him.
His arm was shaky and wouldn’t stay up to his mouth.
I brushed his teeth for him, while he sat in a chair in our bathroom.
I brushed his teeth.
Aaron was coming over to help me bring Sean to his scheduled thoracentesis, to drain fluid off his lung. I helped Sean get out of bed, to get to the bathroom before we left. I helped Sean up out of the bed. Leaning on me, he took a step, then another. His knees gave out and he collapsed on the floor. I helped him up and got him back to the bed. That’s when I decided to have Aaron help me bring him to the ER instead of to the scheduled procedure.
I physically couldn’t help him down the stairs. I’m really thankful for Aaron.
Sean’s over-sedation was caused by extremely high calcium levels. This also affected his mental state. He slept for several days in the hospital. When dilaudid wore off and the pain crept back on, he woke up and didn’t know why he was in the hospital. He was angry and confused and pleading with me to listen to him. He knew he was in pain, though, and that he needed to leave. “Why wont you listen to me? Please. Why won’t you help me??”
This happened a couple times. The first time it was just me in the room with him. I called the nurse for meds and sang Joshua 1:9 to him, to help calm him down. It was a song he learned at camp. “have I not, have I not commanded you? Be strong, and courageous. Do not be terrified, do not be discouraged. Be strong, and courageous. For The Lord your God will be with you wherever you go.”
I sang to him. Over and over.
The second time that happened, Aaron and Annamarie were with us. He kept escalating, though, and I reverted to my ‘teacher voice’ in an attempt to shake him out of it. That only increased his anxiety. He ripped the IV out of his arm in an attempt to leave, after pleading with all of us in the room to help him.
Blood poured out of his arm.
I tried to help him calm down, and to stop the blood from gushing. I didn’t know how. I couldn’t do it.
He almost made it out of the room the next time, but he wasn’t able to get by the nurse standing between him and the doorway. He argued with the nurse, again pulling the IV out of his arm. There was blood. On himself, on the floor, on the doorway. He couldn’t understand why no one would help him.
He heard music that wasn’t there. He didn’t know the date or the president. He didn’t eat. He slurred when he spoke. He thought the nurses were conspiring to kill him. A lot of awful things happened in the last year. In the last month of his life. There was a lot that I unsuccessfully tried to help him with that the nurses did better. There was a lot of adrenaline and not a lot of sleep. I just wanted to do everything I could to protect him and help him and make him somewhat comforted and encouraged through that whole process. I wanted him to never feel alone, and to feel loved.
I loved him. I love him. I hope he felt that.