Emotional Conflict
Trip Start
May 31, 2008
1
13
28
Trip End
Dec 15, 2008
Hamilton,
New Zealand
Saturday, September 13, 2008
Note: This is somewhat morbid and contraversial - but it's my journal....freedom of expression blah blah blah....etc.etc.
Is it ever okay to wish someone would die? Because watching Olivia turn a shade of grey/purple that I thought was only possible in a corpse, watching her struggle to take a breath and seeing her give up for only a few seconds - until she was shaken and started breathing again - I wished she would die. I wanted to turn off the oxygen and let her make the decision on her own. I wanted to stop pushing, pulling, banging on her in an attempt to get the fluid out of her lungs. I wanted to put away the suction machine, hold her hand and tell her it was okay if she didn't want to keep fighting. Watching her tiny body shake with the effort it took to breathe, I wondered if we were doing the right thing. If she could talk to us, would she tell us to keep helping her fight? Or would she just tell us to leave her alone already, she was tired of it and wanted to get on to better things.
Olivia has no quality of life. I can say this with total confidence as I have seen many individuals with ABI live happy and fulfilled lives, even in wheelchairs. Olivia can't move on her own other than slight stretches in protestation when we're doing something she doesn't like (changing her 'button' for her feeding tube because it's sore or stretches). It isn't just the lack of movement, it's the breathing. She isn't on oxygen constantly (unless, like this week, she's been sick) but we are constantly percussing her back (cupping your hands and firmly patting her back to get the fluid to loosen in her lungs) and suctioning out fluid. Her body has - for lack of a 'nicer' word - deformed in such a way that her spine is completely curved away from the rest of her body, giving her a hunched back and her ribs push through between her breasts. It hurts her to sit up for long periods of time even though that makes it easier for her to breathe.
A shift with Olivia consists of me connecting her to a machine that basically is like a steam facial, to try to loosen the gunk; tube feeding her dinner and drugs (if she needs them), putting her upside down in bed and doing percussion for almost half an hour, suctioning, turning her and percussing the other side for almost half an hour. She has a bath and if she isn't too gurgly I can read her stories or do some sensory play with her, she can track with her eyes so we work on that. There are also stretches to do so that she doesn't stiffen up so much we can't put her clothes or nappy on anymore. Then loads more percussion and suction before bed in hopes that she'll be clear enough to sleep through the night. (She usually doesn't.) She also goes to school during the week if she isn't sick and there they do extra activities with her (I'm not sure what they are as I don't go).
I enjoy working with her, of course I've come to love her, and it's gotten to the point where I'm so used to talking to her that even when I'm at home I've caught myself saying 'Olivia...' after a sentence (yes, I often talk to myself). It's become habit to include her in conversation even though she can't answer back verbally. I know she's listening and when she really wants to, she'll open her eyes really wide which is when I wish I could read her mind. Sometimes work is tiring but mostly I've gotten the hang of it now. This morning was another story.
There was a moment where the physio asked me what time it was and only ten minutes had passed (it felt like hours) and in those ten minutes Olivia's oxygen levels had gone from below 40 to above 50 and back down again (100 is where you should be), she'd stopped breathing and I was beginning to wonder just how I was going to handle her dying on me. She didn't. She pulled through but like I said, I'm not sure how I feel about that. And the fact that I'm not sure about that is horrifying and confusing. It's also funny how in the middle of a crisis a person can be completely calm, focused and on the ball but completely fall apart afterwards. (Me, currently trying to get it together before my night shift.)
I've said this many times to many people but I'm putting it out there - if anything ever happens to me and I need to be put on oxygen or anything involving the fact that I can't live without assistance....just don't. I have bent over Olivia's ear this week, all the while holding the oxygen mask over her face because that's my job and it's what I'm 'supposed' to be doing, telling her that if she was tired of fighting, she could stop. Because in my heart, I believe it's the right thing to be telling her - even if my actions are contradicting my words - and because I know no one else has the strength to tell her. To be clear I don't want Olivia to die, I want what's best for her and I don't necessarily think that -living- is it.
People in the medical profession deal with this all the time. You're supposed to save lives but what if in saving a life, you are really just prolonging a death? Drawing it out? If Olivia could talk what would she tell me? Would she say 'For god's sake, leave me alone already, I've been trying to die for 15 years.'
In my heart, I think she would.
Comments
my thoughts
Wow no joke this is morbid and controversial and yet so much a part of many of our lives. I think most of the world has thought about this topic. Know a family member or friend of the family who has dealt with it, or worry about it as their parents begin to age.
In my case I have lived with fear of it for most of my life. What would happen if I got so sick I could not longer speak for myself, and what if the only thing keeping me alive was machines?
Well I know what I want to happen, pull the damn plug, but it is not that easy is it? Before getting married my next of kin was my sister and her only request was to make sure two people were listed on my living will because as much as she wishes to do what I have asked she is not sure she has the strength.
That scared me for a long time, would the people I listed in my living will actually follow through? I suspect the two listed right now will (likely they will fall over each other getting to the plug ~lol~) but what if you don't have a living will? What if you were never in a position to tell someone like Olivia? I wish I had the answers, I know that the world does not generally look with favor on people who would give these souls some release.
I personally feel for them and for those that must sit by and watch them fight for each second of life. I wish I had answers, for them, or even for you, but then I don't think you were looking for answers here.
I guess I just wanted to remind you that others sympathize with your plight and that if Olivia can't at least speak up for herself I am sure she knows someone is looking out for her even if it is nothing more then letting her know it is ok to let go if she is ready for that.
You are an angel in your own rights even if you forget that sometimes, just be there for her let her take your strength and use it as she sees fit, to let go or live another day.
A hallway between open doors
'I enjoy working with her, of course I've come to love her' - in that one sentence, I think, you've justified her entire time here. We exist for many reasons, none so universal nor important than to give others the opportunity to overlook our imperfections and feel love towards us.
No matter when she goes, she has been loved at least once and as such her time wasn't a waste - good on you.
M.
not morbid..practical
I know what you are saying and I am with you all the way
Wow
I have sooooo felt like this many-a-times. But the question has always eluded me. 'Am I here to play god....'(if there is one). Medicine has advanced so much that we do more than at times we should. I agree with that.....
I could go on, but all I will say is that the doctors wanted to give up on you.....do I need to say anymore.
You did what you were meant to do. Olivia knows, I am sure, that you care for her and only want the best for her. I am sure you allow her to feel much needed comfort. I wish I knew what to say to make this ok for you..but it never will be. It is what it is.....and sometimes that really sucks. Love you.
making a difference
hey K...I loved reading...despite the emotional trauma you may have been feeling. It is amazing however that even with Olivia's medical difficulties she still has the power to make a difference in the lives of so many people. Thanks you for sharing (as always, doll!)
just a thought..
(disclaimer: you're there, I'm not.. I'm speaking about this in the abstract, you're talking about an individual.. so take all this with a grain of salt.)
I'm always wary when people talk about 'quality of life'. Most people, especially those who've never been chronically sick or disabled think that pain or not being able to move through the world in 'normal' ways is the worst thing in the world.. Some people (not saying you do, just some people) seem think that living a life that includes being in pain every day or needing help to do things means that you have no 'quality of life'. And I don't buy that. At least, not necessarily. There are levels, and there are degrees.. and the body is a pretty amazing thing that can learn to adapt and cope with and get used to a lot of things.
This girl you're talking about sounds like she follows stories, goes to school, she participates (cause listening is participating) in conversations, she probably has some beautiful thoughts that we'll never know about. It sounds like she enjoys things, enjoys life.
WE may think that we could never live that way, but it's all she's ever known. Who's to say that those little, simple things that aren't worth it? I think that ultimately, it's about whether a person's joy outweighs the pain they're in.. and that's something that Olivia probably could never tell you, something we couldn't ever know. All we have to go on is our own ideas about life and how we would want to live it.. and our fear of pain, of dependence on people.
Society in general seems to be so quick to say that some people 'have no quality of life', but I think that says more about society than about the people actually living those lives.