Dear floor, ED and ICU nurses,
Please forgive me.
I know he's dying. I get it. I do. We were told five years. Five years on an outlier and he would be gone. We were told transplant was an option but with the dismal survival rates, we opted for rehab. He is now eight years post diagnosis.
We know we are lucky have had him this long. It doesn't make this any easier. Please don't say it like it's a mantra of comfort. For reasons I don't know or even fully understand, it only makes the sting more sharp.
We see it, you know. The mental status changes. The lack of control. The shuffling gate. The use of accessory muscles.
We see it.
And we know exactly what it means.
When he can't remove his bipap to eat, we know. When he can't lower the head of his bed past thirty degrees, we know. When he can't talk, we know.
Forgive me, please, my many sins. Forgive me the overbearing stare and raised eyebrow. Forgive me for repositioning him and demanding another pillow for under his heels. I'm helpless, you see, to stop the very shadow that will claim him and I have nothing else to cling to. I have nothing else but what now feel as tedious, miniscule scraps of knowledge that amount to nothing. No cure. No hope. I'm lost.
You must understand that when I nearly demand to read the orders or see the chart, when I loom over your shoulder, it is not that I don't trust you...it is that I don't trust myself. I don't trust myself to be cope, to make all the right choices, to advocate, to deal with the loss and reconcile the feelings of guilt, of doubt, and pain.
I beg you to understand that I'm scared to death and helpless and a control freak and for once I can't make it better. Understand that I glare instead of cry, laugh instead of scream, and go silent when angry. It's dysfunctional, but it's my way.
And I don't want to be up later at night, pacing a hole in my carpeting, consumed by nausea and a feeling of coulda-woulda-shoulda.
So when you see me wandering the halls, wringing my hands, biting my lip and growling under my breath, please don't be afraid to offer a kind word. It is what I need to hear. Even if I do not acknowledge that I heard it at all. Trust me, it got through. And I will remember.
You must understand that this man is precious to me--that I want to guard him the way he guarded me from myself. That when I call every two hours to demand a neuro status check it is because I am not there and I am struggling to convince myself that I really do need to sleep even after being up for nearly thirty six straight hours and you are my eyes and ears and everything else.
Please see what that cranky, demanding creature is to me. He wasn't always this way--a brain sitting in an acid bath is a terrible thing. I can't control what's happening to his body but I can control the flavor of his Jell-O and so, you know what? If that means raising holy hell with Dietary so I can get red Jell-O for him, then I will. Because it's all I have.
Be genuine with us. We can handle it.
Know that he is the first man, since my grandfather, who treated me with kindness, and god help me, love, even though I was a crazed woman-child dwelling in a familial household, riddled with hormones and a gloomy past, laden with baggage, sociopathic tendencies and unable to form any sort of bond and yet he never left. I lived years without that bond. Years without feeling the need for the guidance and protection only a father could give. Some part of me missing that bond and loathing "daddy's girls" everywhere. But he's trying to leave me now...I survived nearly a lifetime without him and suddenly I 'm not ready.
I'm not ready.
I'm not ready.
Know that I never encourage him to use me as some kind of threat...some unholy boogie man that will get you if you don't help him right this very second. Because, "my daughter is a trauma nurse and she will know what you havenít done right." Know that when I come in and acknowledge that, ::sigh:: yes, I am a nurse and then talk a little shop with you, I am not trying to be in your business but show you that I understand what you are trying to accomplish and understand what you are dealing with on a day to day basis.
I am nothing without you and neither is he.
But he is my dad.