At the nursing home I work at, we have a man who is pretty much in the same condition as Terry.
He was in a motorcycle accident at the age of 19. He has been in our nursing home for 13 years.
Rodney cannot move by himself, he cannot speak, he cannot eat or drink. He has a feeding tube. His parents come every morning and he is moved from his bed to a special wheelchair (that is almost like a bed, with head raised). He has to be restrained in this wheelchair so he stays positioned correctly, his head has to be positioned in a special pillow to keep his neck and head in position. His parents wheel him around the nursing home for an hour or so, constantly pushing his head back in to position when the pillow starts to slide.
The rest of the time Rodney is in bed, unable to move. His parents have set up a TV facing him with cartoons on daily for him to watch.
When the Schindlers speak of responses by Terry, I am assuming they are the same responses as I see in Rodney. Occasionally, when I talk to Rodney he will either make a loud grunting noise or his eyes will open up wider or he blinks. I don't know for sure what this means, I don't think anyone does. But to me, it is simply responses like that of an infant. When you speak to a baby their eyes may follow you, they may make some noise, they may "smile". To me, these responses are more like reflex. Responding to stimulation, but no understanding.
Rodney has no life. His "life" is lying in a nursing home bed unable to communicate. Unable to let you know if he is in pain, unable to let you know if he isn't feeling well, unable to make decisions about his "life" and verbalize them, unable to simply let anyone know if he is even comfortable or not. For 13 years he has been unable to taste food, to drink. For 13 years he has been unable to move his body. His muscles are atrophied. His arms stiff and pulled close to his chest, his hands curled. One leg is straight out, toe pointed and stiff as a board.
Rodney could live this way, sustained by that feeding tube for many, many more years. He will probably out-live his parents. When his parents are gone, he is completely at the mercy of whatever nurse or aid is on duty. No family. Just exisiting in a nursing home bed.
Do I have the answers? No. Do I know what Rodney may be thinking, if he is thinking at all? No.
I do know how sad it is. I can imagine that if Rodney could speak, I would think he would say, let me go. How can anyone possibly want to live like this?
His mother did admit to me once, that if she had to do it all over again, she would have let him go in the very beginning, after the accident.
Terry's parents have stated that no matter what the level of their daughters brain function, she is still their daughter. To me, this sounds like they are thinking only of themselves.
As I stated I do not have the answers. I just know that I see this on a daily basis and I cannot imagine wanting to exist in this way. Because it is only existing, not living.
I feel bad for Rodney as he cannot tell us what
he wants.
Which brings me to a very important subject:
Living Wills. Everyone should have one. No matter your age. At 19, before Rodney had that accident do you think he would have any idea that he would soon have a horrific accident and live the rest of his "life" as a vegetable in a nursing home? Of course not. People think that only elderly need to get a living will done.
What happened to Terry, what happened to Rodney, can happen to anyone, it can happen to you. Don't let your future be decided by someone else. Make your wishes be known now.
Here is a site where you can download a simple living will stating you do not want any life sustaining procedures (including a feeding tube).
www.la-legal.com/forms.htmHere is a site that explains Advanced Directives and Living Wills. You can also download forms here also.
www.hcdecisions.org/AdvanceDirectives.aspMake your wishes concerning your health, your life known. Get it in writing. Do not leave the decision up to someone else. It is your life.