I have been writing/editing this particular post for over a year. Back and forth, back and forth. It’s been in my journal forever, just my thoughts throughout this process of hell on earth. Never planned to share them, but in the past month I’ve talked to two different people that expressed the same emotions, or thoughts. So, it’s been on my mind a lot this past week. I’m editing it down, and cleaning it up…but it still may be very random, some may be hard to read, but they are my feelings, and they are valid. I know I’m not the only one that feels like this at times, and it’s hard. But, if I’ve learned anything this past two years…it’s that getting it all out, massively helps me.
The following is from my ‘journal’ on my phone I always keep. These are the two weeks after I got out of the hospital…
Why right now?
Why is this happening?
This is not really $&@$(!% fair. At all.
I’m not even okay
I’m not even together.
I cant even think. People are asking me questions, telling me things that I do not need to deal with, I can’t even understand, nothing makes any bleeping sense.
He’s not even gone anywhere and I’m being told to pick out a car, where are we going to go? Mepkin? Trey&I haven’t even talked about mepkin in years. We went to cypress gardens about a year ago and he wanted to take benton by there, talking about our shelf…but I refused. I couldn’t face it, I couldn’t accept that that was a reality back then. So I distracted Trey with food, and we did not go. Since then it’s never been mentioned. Why do I have to even think about this?
I don’t think this is right. I have no idea what’s real, what’s not. Everything was fine. Everybody told me everything was fine.
WHY THE F@&$ is this happening?
I just need everyone to leave. Is this because I didn’t pass, so someone’s gotta go? Take me back. I’m fine…I don’t want this…I can’t handle this…don’t do this to me now I just fought like hell to get back here to take care of Trey and now he’s being ripped away. Who the …. would do this? I was RIGHT there, literally right there at deaths door…ringing the door bell, banging on the door…I saw my grandma playing cards with my aunt Fran…I was right there. Why in the hell would you take me there, and yank me back to this hell? Yes this hell because now my entire world is falling apart, and I can’t even barely stumble around. It takes me 30 minutes and a circus act to dress myself, I have a shower seat, I am a flipping mess, and it’s like oh….that’s not enough, let’s destroy his world. There that will be fun. It’s not fun, I want to go and not him, I was ready why WHY WHY
I fought so hard to get out of that damn hospital for this? No.
I had therapy today. They came to the house. She was here 15 minutes. Trey sitting in my walker, so I answered the door. She didn’t even realize I was the patient, she thought Trey was. I pushed him to the bedroom and helped him to bed, and then went back to meet her. All she said is your basically good. Your totally moving on your own, so not much I can help you with. UMMMM. Ma’am I can barely do any of this shit. But okay. You leave cause I don’t like you anyway, and I’ll get a different PT. Trey didn’t like her either. So I already requested a different one. But, I’ll have to go to the hospital not home health care. I don’t want to leave Trey. I’ll call Katie and ask her for some home stuff to do.
Well, today the nice nurse said we will have to switch to morphine drops soon, she just knows. I want to hit her so hard, and I don’t know why. She’s been so much help, and so nice. But now I just think she’s an idiot. Why couldn’t I just have gone while I was in the emergency room? I feel like that would have been a hell of a lot easier on everyone. Not this freaking torture. Just bam, get it over with, he’s gone…clean up, move on. This is stupid, this is insane, this is not fair. To ANYONE. Everyone is all focused on me, and they need to be focused in Trey. What is happening. Why?
WTF kinda joke is all of this? Am I on candid camera? For real? This is not happening. Trey is barely responding. But, when he does he’s all there. Totally normal, and then back to sleep for hours. Hospice was here, he was alert for a good bit, told her thank you, scheduled a bath for tomorrow and immediately fell asleep. As she was leaving she tells me that she’s going to have the aide stop by real quick today…because they are suspending hospice because of this damn Corona thing. WHAT ALTERNATE HELL IS THIS? I think she saw the look of fear in my face. She told me she would stop by in the morning. Just to check on things. She wasn’t supposed to but she would. I know I keep saying this but this can not be happening. I am supposed to go first. I’m going to be all alone. What the …. am I going to do? Please take me now. This all I can handle. Don’t leave me alone here. Don’t cripple me and then take away everything in my life. What the hell is there to live for? This is insanity and the cruelest joke. Trey needs to be here to take the girls to DC he has always wanted to do that. He still needs to do that. He needs to do so much. WHY TF is this HAPPENING. His whole face lit up the second Harper walked in. He had the biggest smile. It was totally Trey. WHY THE POOP WOULD YOU TAKE THAT AWAY. WHAT IS GOING ON. Margot was too scared to see him, he understood, and watched her on the camera wondering around the backyard. This weekend could not have been the last time they see their uncle Trey. Someone took a picture of Missy. Trey, and I. That’s gotta be a real winner of a picture. I wonder who took it. I can’t remember. Why did I let anyone take a picture of me looking like a stroke victim? I hope they deleted it. But now I want it. That may be the last picture I’ll ever take with Trey. Ugh. But why would I want that? Can someone change their minds already? Realize they’ve made a big mistake? My mom is here, she already thought I was gone anyway. She’s more ready for this than anyone. WHY DO THIS. WHY ME, and then REJECTION AND NOW TREY? Cruel & Unusual.
The nurse came by this morning like she said. She explained the morphine to benton and I. I don’t want to use it. At all. But she said as soon as he’s unable to swallow his regular meds we will have to. And the last thing she said as she walked out the door was ‘you are going to have to tell him it’s okay, and goodbye’ I don’t want to. I don’t want any of this. Especially this. WTF have I done in my life to deserve this? Seriously WTF.
Todays my birthday. I will NOT tell him it’s okay. I will NOT tell him goodbye.
He woke up and talked to benton and I. Told us to take care of one another. I still didn’t say goodbye. He knew it was my birthday. Said happy Birthday.
it’s Tuesday. Nurse came back this morning because I can’t get him to wake up for his meds. I like her less and less. Im glad she’s willing to come by to check on things, but the site of her now makes me ill. She said it’s time for the morphine. But she knows my fear of it. And she knows he hates pain medicine. So she is starting out at 1/4 of a dose. We have to watch and see if he’s acting uncomfortable at all. And call her. Trust me. I’ll be calling. Tommy and Brenda are supposed to meet with the accountant today I think. I really wish they would just come over here. But, how do you make that call? Hey I’m not the boss of you, but get over here NOW.
-Treys parents came by. THANK GOD. I have a bad feeling. I’m so glad they stopped by.
-doesn’t seem in any pain at all. We have actually skipped a couple doses. And we are still at 1/4.
-Well. It’s almost time for bed. It happened. I don’t know why. Or how. But, I let him know I was going to be okay. It wasn’t easy. By any means. But I needed to say thank you for all of these years. I didn’t say goodbye. But I told him I loved him, and If he needed to go that would be okay. But, I would always be here. Benton came in and was telling him we would all be okay. Even Beauregard, and the chickens. I guess Bess is S.O.L. When he mentioned Beauregard I swear Trey squeezed our hands. That was the hardest thing I have ever had to do. That is not fair. And I do not recommend it. Benton helped me change treys Pajama