I ask that my 7P.M. Medication be given slowly because it makes me sick to my stomach.
I ask that the spoon be held a special way so I can lick off the yogurt because my mouth doesn’t work correctly.
I ask people to allow me to answer questions because I still can. I don’t do it out of disrespect to anyone. I do it because I still have a voice. I am still me, just slow. They understand this and are accommodating. If I am asked a question I would like to answer it. If I add additional things or explain something different there was a reason.
I ask for the computer to be adjusted just right or I can’t use it.
I ask for two people when moving me because it’s to much on my body
I asked to be adjusted in a particular way because I am trying not to hurt.
Yes, it takes a lot of tries. Yes, it is so frustrating for both of us. Yes, I want my independence, what I have left of it. Yes, I need you to be my hands, arms, and legs. Yes, I want you to advocate for me if I tell you I can’t.
I’m not complaining. I’m just trying to make things easier for both of us.
Instead the towel is thrown early. I’m punished. My yogurt gets thrown away because you didn’t want advice or I look at you wrong.
The computer screen gets left to someone else that can not read lips, so I have to start all over making it twice as hard because it was good but you saw my face and again misread it.
The tv show I was watching got turned off because I was sick to my stomach from medication being given too fast.
I fall asleep, not because I am not interested. I fall asleep because I’m tired, have no energy, and I am not doing well.
So I wonder have you just given up on me?
Would you rather be at work than home?
Do you realize none of this was an attack towards you?
Do you want me around or am I being selfish to think you do?
Everytime there is a day like today, that is very busy, which is normal for our nurses and cna. It’s too much for one person. So then the burden sets in. I feel like I’m not wanted. I feel that if I passed tonight guilt would overcome you. Regret would settle in. I don’t want that, so I try to make it easy and I’m told that I am complaining.
I’m told I am picky.
I’m told I’m trying to start a fight.
I’m told I make you feel like a child.
None of this is intentional and again I am left to try and explain myself. I don’t know how much more explaining I can do.
I need understanding, empathy, love and attention.
It doesn’t have to be every second but I also think a break for you would be great if you were not so angry.
I’m sorry I make you feel that way. I’m the problem and I don’t know how to fix it.