old episode of ER

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Seana30

New member
I was just flipping through the channels and an old episode of ER caught my attention because they said Cystic Fibrosis. It is about a 17 year old young man with CF who does not want to be intabated, but since he is 17 his mom gets to make the decisions.

This really made me think. My husband and I know what each others wishs are if something happens, but I don't know what my kids would want.

This might be a very personally question but..........did, and at what age did your parents talk to you about your wishes? Did they talk to you about a DNR, etc. I would not want to scare the crap out of Courtney, but would like to know how she feels about all of this.

Seana
 
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JazzysMom

New member
I remember that episode. I think it was Dr. Carter that he was so upset with because Carter knew what his wishes were, but since he was a minor they did what the Mother wanted. That is a tough call as a parent!
 
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Allie

New member
RARRRR that episode makes me so mad, she totally disregards his wishes! I think, no matter how hard it is to lose a child, you have no right to impose your wishes about your life and death on them. Especially at that age. I remember when it orginally aired, I had to calm Ry down and convince him that no one in his family would ever do that to him. He was freaking out about it.

Okay, on to the question. Ry's family was always very upfront about everything. When Ry had to have his appendix out at 14, they talked abiout what Ry wanted to do if things went wrong. Ry never wanted to be intubated and live with a machine living for him, and so that was always known by his parents and me, and anyone he thought needed to know. It depends on how you have talked to her before, some parents choose not to tell their kids the turth about CF life expectancy, so they can't very well bring that up. Ry's family was honest about it all, so talking about it wasn't an issue. It wasn't a "this will happen" it was "if something bad happens". I think Courtney is smart enough to get that, but use your discretion.
 
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Emily65Roses

New member
I saw it today too! That episode, quite frankly, makes me irate. I understand where his mother's decision came from, but he's an adult and made it clear what his choice was. When she said to vent him, he fought. They had to restrain him to get it in. I don't care how much I want my child to stick around; if it was a CF-type situation and there was really no hope left, I couldn't watch a doctor force a tube down their throat as they fought it. He's much more adult than a lot of "regular" 18 year olds and can't make his own decisions. That drove me nuts. He's not an idiot, he knew what he was doing and what he wanted.

As for me personally, I don't remember the first time I said anything to my mom about it. I talked to Mike about it from pretty early on. And recently we got Five Wishes documents and filled them out, specifying what we do or don't want done, if something should happen. You can be incredibly specific, and write anything you want. And as long as it's signed by witnesses and such (doesn't have to be anyone legal), it's fully legal. Not in all states, some require another step or two, but in CT, at least, it's 100% legal. You get to choose who your "agent" is. Basically that's the person that can make decisions for you if you're unable. I made Mike mine and his is me (it can be anyone you want, you don't have to be married or anything). He knows exactly how I feel, and respects me enough that if something happened, and nothing was going to work (other than to delay by a few days/weeks), he would let me go. I trust that (and him) with all my heart, so I'm set as far as DNC legal document-type stuff goes.

I really don't remember how old I was when I first started thinking about it. But I made pretty concrete decisions in the last 2 years, and finally made them legal around this past Christmas.
 
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thelizardqueen

New member
My mum and I have always talked openly about my wishes. I can't remember when it was she brought it up. I even think it was something I even brought up myself around the age of 9-13. As it stands right now, Cory is my "agent". He knows what I want done, etc in the event that I can't make a decision myself. In the event that he and I break up (heaven forbid), or something happens to him, my mum knows my wishes. I have a living will at home. I haven't filled it out yet, but I should get around to that sometime soon.
 
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cutiepatootie

New member
<span style=" color: #800000; font-family: Verdana;">My parents
didn't really come out and talk to me about what I wanted or
anything like that.  I was just always told at a young age
that I would probably not live as long as everyone else.  So I
just came out and told my parent what my wishes were, when I was
younger.  I think it was around the age of 13 too.  So I
can't really help you out in how my parents asked me about what my
wishes were.   All I have to say is if she know allot about
her illness and the types of consequences that come with it, she
might have already thought about it, and just not said anything to
you about it.  Its not always easy to talking to your parents
about stuff like that.  I'm almost 30 and I still have a hard
time talking about that with my parents.  If you really want
to know what shes thinking about and you have a good relationship
with her you should just sit down with her and ask her about it she
might want to talk about it with you, she just might not know
exactly how to bring up a conversation like that with her parents.
 I hope I help you out a little, on how to go about a topic
like this.  I hope everything work
out!!!    
 
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Allie

New member
I really want to go rent this now, even though I know it ticks me off. How's that for emotionally masochistic?
 
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Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Allie</b></i>

I really want to go rent this now, even though I know it ticks me off. How's that for emotionally masochistic?</end quote></div>


/shocked look


How did you get out of your bindings?!?! I thought I told you only one toe, to use for typing, for 2 mins a day? It seems daddy has to remind you why i'm called daddy. You know what to do...
 
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anonymous

New member
When DS was diagnosed shortly after birth wcf, that was the first thing I thought about. That was the one and only thing I knew about CF was from that episode on ER. Thank goodness a doctor came down and talked to us about CF 'cuz I was freaking. Liza
 
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Scarlett81

New member
My mom brought that up to me when I was like 16.

I think its maybe a good idea to gather the whole family around and talk about that stuff. That way, the sick kid won't feel so singled out. Provided that they're old enough-like 12+.
Maybe like-mom and dad don't want to upset anyone, but if something ever happened to us, you'd be safe with.....and if you kids ever got in an accident, we'd like you to....Kind of make it a broad topic?
 
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skh

Guest
Seana, thank you for bringing this up. I too have wondered about this. My daughter just turned 15 but has only known for the past 4 yrs. that she has cf. She knows all about cf and knows that her life expectancy is less than what her sisters may have. Her health is great at this point and she has never been hospitalized for her cf. We have had our talks but they have never included this topic. I don't want her to dwell on death and dying. I want her to live each day to its fullest. So, help me out here, I think for us I am going to hold off having this type of talk with her for a little bit. I could be so wrong on this, but teens have so much to deal with to begin with and then you through cf into the mix and it becomes almost overwhelming. I just don't want to do the wrong thing and Abby is so private the way it is with her cf. I am the only one that she is open with regarding her disease and I don't want to fail her. So, any advice is welcome.

Sue
 
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Emily65Roses

New member
My only advice to you, Sue, is be careful what you don't tell her. There's a lot of information out there... books, internet, other people. She may learn about CF in her bio class, where the books say we're supposed to die by the time we're 20 (depending on how old the books are, of course).

I know you don't want to throw more into her teenage years than necessary, but I think finding that information out in an off sort of way (instead of someone you love sitting you down and talking to you about it) would be more traumatizing.
 
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JustDucky

New member
Yeah, I remember that episode well, in fact, I believe I made my wishes be known after seeing that. What also prompted me to do my Advanced Directives is by what I saw in nursing everyday- I think the worst thing I saw as far as a person's wishes went was when a 95 year old woman had a massive stroke, no hopes for recovery and her family wanted everything, including intubation and feeding tubes, done for thier dear great grandmother. The reasoning? They wanted her to live to be 100, no matter what her quality of life was. Caring for that patient was easy, I made her comfortable...turned her and put lotion on her dry skin. But, it was her family that made it hard for me...it was almost unbearable to listen to them tallk about that..I would be present in the room as the doctor outlined her latest test results, he would be showing the CT scans to the family, explaining how her latest EEG tests were (she was basically a vegetable) and that she would never wake up again. She was ultimately intubated and passed about 3 weeks after her stroke, with a feeding tube in place. We had to code her when her heart failed, if anyone has seen a code up close and personal, it isn't like the TV's...they are very traumatic to the person, ribs are often broken and those who make it through a code, many times succumb to other complications. Now, I am not against codes, but try coding a 95 year old woman with extremely brittle bones.
Interestingly, I made out my advance directives before I was even placed on a vent, diagnosed with muscular problems and CF...I have made amendments to it because of my changing health. I am a very strong advocate for Advanced Directives, no matter your state of health.
Definitely makes you think, doesn't it?
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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skh

Guest
Emily, thanks for the response. Abby most definitely knows about her life expectancy. She was told that on her very first CF visit. And we have discussed death and dying - I just don't want that to be her focus. She is pretty upfront with me and we have discussed so many things - marriage, possibility of children or not. But I just don't want her to focus on the negative, I don't think that's health either. Does that make sense?

Sue
 
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Emily65Roses

New member
Oh well hell, I didn't know she already knew all the info. That's all I meant, it's important to have that info on hand. No one should ever focus on it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
We all talked about it when my mother was dying.
She had told me what she wanted (or didn't more truthfully) and so when everyone else arrived I brought them up to speed. Almost without prompting everyone started talking about what they wanted or didn't want.

Maybe that's one way to get younger folks to open up without making it about them. When the Quinline and Schiavo cases were in the news (depending on your age). That would have been an opening if you wanted it. I'm sure it will come up again. Actually now that the 2 Schiavo books are coming out it is in the news again, that gives you an opening.

It's important for everyone in the family to discuss.

My daughter was 18 when my mother died. She (my daughter) wanted everything as long as she'd have her wits about her and be able to proceed without much equipment (that meant vent but only if docs thought there was a good chance of coming off)- otherwise unplugg her. She also wanted the world's largest headstone saying "Beloved daughter, friend, etc etc) if she died.

She's 32 now and a mom. She's more into discreet headstones now, but still feels the same way about the other stuff but puts it in terms of "as long as I won't be a burden" or "as long as I'll be able to be a mother". Her husband knows in his gut what she wants. So g-d forbit it cmes to that, she'll get only the treatment she wants.

It's a tough conversation if it's only held with one person one time. If it's an ongoing conversation for everyone it's ok.
Have you told your daughter what you want or don't want if you ever are in that situation?. She ought to know that. You might well go first, you know.
 
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