A SENSITIVE ISSUE

[LisaV]

I don't think it is so much a question about having a talk about CF being a "death sentence" with the statistics that is useful. As everyone always points out the stats are just that stats - they don't tell muuch about how the disease will progress in any one person. But I think the talk about having a progresssive life-threatening disease would be useful - particularly the progressive part. And how the progression is measured (lower FEV1 numbers, increase in exacerbations, etc)

So when to have it is the question. I would say that 18 is too late to have the talk because by 18 the CFer is legally responsible for their own care. Too wait that long is almost to be diagnosed as an adult.
Is 16 too late? That would give the Cfer some time to go thru the "grieving process" while still at home to receive emotional support. But it sure would be a chaotic last 2 years of high school. And how many dreams would the CFer already have that they thought they could reach without any effort at all? How pissed would they be to find out how much effort and dumb luck it will take to reach them?
What about 14? That could just knock the socks off of the first 2 years of high school.
Or 12? That would be junior high. And 8? Well you could have the talk at 8, but can 8-year olds really understand "progressive" at all?

Maybe it is like sex and you tell the truth all along, but only make darn sure that they hear it by junior high? Maybing thinking about having just one "talk" is not useful at all.

But whenever you have it, once you've "shared" the information, you're going to have a kid who goes thru a lot of the difficult emotions. By sharing (especially if you wait and do it with the one talk) you are basically giving your kid the diagnosis. Remember how you were the first year or two after the diagnosis? Well, now it will be your kid that feels all of that stuff.


JoAnn Le Maistre wrote a good book called "After the Diagnosis" for people with progressive illnesses. (Here is a link to a small piece called "Coping with Chronic Illness" from that book <a target=_blank class=ftalternatingbarlinklarge href="http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html">http://www.alpineguild.com/COP...CHRONIC%20ILLNESS.html</a> .) She identifies the stages of the ongoing emotional process of living with the progressions as crisis, isolation, anger, reconstruction, intermittent depression, and renewal. She suggests that they are felt first when one is diagnosised, but that one each milestone in the progression. I recommend the book because my husband (who was a therapist as well as living with progressive illness) thought it was the best thing out there for the general public.

Someone asked if an 8-year old who knew the truth could be happy. I forget sometimes that for many the first person they have ever known with a progressive life-threatening Dx is their CFer. I don't know about 8 (see above) and I don't know what "happy" is, but there are lots teenagers and adults who have joy in their life. Le Maistre talks about how to be "able-hearted" while living with progressive illness. I would suggest that those who are able-hearted are able to feel joy in their lives. If you want to hear joy in the life of someone with a progressive illness read "Too Late to Die Young" by Harriet McBryde Johnson. Now there's someone I would love to hang out with if I was having a down moment. Her joy is contagious.

 

[Emily65Roses]

I didn't read every response, so if I'm repeating, sue me.

I know I'm a little late on this one, but... 1. I just wanted to say I agree with eveything Allie said. Not that anyone is majorly shocked by that...

2. I agree with Amy as well. Not necessarily in everything she said, but that she has a right to say and that's she's qualified. Jane, I'm not attacking you. Like I said, I didn't read everyting that was said. I just had to put this out there: I hate when people say because we are adult CFers and don't have CF children that we don't know what we're talking about, or don't have the proper tools to answer any given question about kids with CF. You're right, we don't have CF kids. We ARE CF kids. We livd it, we know, in our opinions, what works and what doesn't.

And following Amy, Allie (and others, I'm sure), I think every child should be told ASAP. I do not remember ever being told... know why? Because I always knew. It was just always there, and I've always been aware, and I much prefer it that way. I think if it had been in the dark for years, and then my mom sat down and told me, I would've had to restrain myself from smacking her. I'm not saying, original poster, that your child doesn't know. She probably does, at least to a degree. I'm just using the extreme example of parents that outright lie to their kids. It's much more beneficial to tell a child all of the truth available to you. It's available to you and you don't even have CF. Why should you keep information you have away from them when it's THEIR body? Kids can handle a lot more than people usually give them credit for.

 

[Emily65Roses]

I didn't read every response, so if I'm repeating, sue me.

I know I'm a little late on this one, but... 1. I just wanted to say I agree with eveything Allie said. Not that anyone is majorly shocked by that...

2. I agree with Amy as well. Not necessarily in everything she said, but that she has a right to say and that's she's qualified. Jane, I'm not attacking you. Like I said, I didn't read everyting that was said. I just had to put this out there: I hate when people say because we are adult CFers and don't have CF children that we don't know what we're talking about, or don't have the proper tools to answer any given question about kids with CF. You're right, we don't have CF kids. We ARE CF kids. We livd it, we know, in our opinions, what works and what doesn't.

And following Amy, Allie (and others, I'm sure), I think every child should be told ASAP. I do not remember ever being told... know why? Because I always knew. It was just always there, and I've always been aware, and I much prefer it that way. I think if it had been in the dark for years, and then my mom sat down and told me, I would've had to restrain myself from smacking her. I'm not saying, original poster, that your child doesn't know. She probably does, at least to a degree. I'm just using the extreme example of parents that outright lie to their kids. It's much more beneficial to tell a child all of the truth available to you. It's available to you and you don't even have CF. Why should you keep information you have away from them when it's THEIR body? Kids can handle a lot more than people usually give them credit for.

 

[Emily65Roses]

I didn't read every response, so if I'm repeating, sue me.

I know I'm a little late on this one, but... 1. I just wanted to say I agree with eveything Allie said. Not that anyone is majorly shocked by that...

2. I agree with Amy as well. Not necessarily in everything she said, but that she has a right to say and that's she's qualified. Jane, I'm not attacking you. Like I said, I didn't read everyting that was said. I just had to put this out there: I hate when people say because we are adult CFers and don't have CF children that we don't know what we're talking about, or don't have the proper tools to answer any given question about kids with CF. You're right, we don't have CF kids. We ARE CF kids. We livd it, we know, in our opinions, what works and what doesn't.

And following Amy, Allie (and others, I'm sure), I think every child should be told ASAP. I do not remember ever being told... know why? Because I always knew. It was just always there, and I've always been aware, and I much prefer it that way. I think if it had been in the dark for years, and then my mom sat down and told me, I would've had to restrain myself from smacking her. I'm not saying, original poster, that your child doesn't know. She probably does, at least to a degree. I'm just using the extreme example of parents that outright lie to their kids. It's much more beneficial to tell a child all of the truth available to you. It's available to you and you don't even have CF. Why should you keep information you have away from them when it's THEIR body? Kids can handle a lot more than people usually give them credit for.

 

[Diane]

I dont remember my parents ever mentioning anything about life expectancy, but beings my mom was a nurse, i read all about the life expectancy being 18 (at that time) in her medical books. We eventually discussed it at some point and my mother reminded me that it doesnt mean i am going to only live to 18, that it was just SOME people didnt make it past 18. Some healthy people don't either. I have had a lot of perfectly healthy people in my life die young for all kinds of various reasons, and im pretty sure not one of them ever gave a thought that they would only live to a certain age. Although cf has a statistical surviving age ,not everyone will even make it to that age, and some will far exceed it. I think it is definitely up to the parent to decide when the time is right to mention it to your child about the possibility of an early demise. I also think it is wise to remind them that everyone on the face of the earth faces the same possibility, but for different reasons of coarse. Kind of makes the cf patient feel less singled out for a possible early departing. I definitely think it is all in how you word it that will make it less scary to hear .

 

[Diane]

I dont remember my parents ever mentioning anything about life expectancy, but beings my mom was a nurse, i read all about the life expectancy being 18 (at that time) in her medical books. We eventually discussed it at some point and my mother reminded me that it doesnt mean i am going to only live to 18, that it was just SOME people didnt make it past 18. Some healthy people don't either. I have had a lot of perfectly healthy people in my life die young for all kinds of various reasons, and im pretty sure not one of them ever gave a thought that they would only live to a certain age. Although cf has a statistical surviving age ,not everyone will even make it to that age, and some will far exceed it. I think it is definitely up to the parent to decide when the time is right to mention it to your child about the possibility of an early demise. I also think it is wise to remind them that everyone on the face of the earth faces the same possibility, but for different reasons of coarse. Kind of makes the cf patient feel less singled out for a possible early departing. I definitely think it is all in how you word it that will make it less scary to hear .

 

[Diane]

I dont remember my parents ever mentioning anything about life expectancy, but beings my mom was a nurse, i read all about the life expectancy being 18 (at that time) in her medical books. We eventually discussed it at some point and my mother reminded me that it doesnt mean i am going to only live to 18, that it was just SOME people didnt make it past 18. Some healthy people don't either. I have had a lot of perfectly healthy people in my life die young for all kinds of various reasons, and im pretty sure not one of them ever gave a thought that they would only live to a certain age. Although cf has a statistical surviving age ,not everyone will even make it to that age, and some will far exceed it. I think it is definitely up to the parent to decide when the time is right to mention it to your child about the possibility of an early demise. I also think it is wise to remind them that everyone on the face of the earth faces the same possibility, but for different reasons of coarse. Kind of makes the cf patient feel less singled out for a possible early departing. I definitely think it is all in how you word it that will make it less scary to hear .

 

[Scarlett81]

Yes Diane-I agree.
I think there has to be a balance between presenting the "cold hard truth" and optimism. If a kid hears-this disease will kill you one day-might they think well I'm going to live high on the hog, so to speak (sorry I grew up on a farm) and not care for myself properly b/c I'm gonna die anyway? Optimism has to be stressed-environmental and emotional factors have to be included. Not all bodies are the same like Diane said.
I just think you should always end on a positive note. Kids are resilient but they have limits to what they can handle.

 

[Scarlett81]

Yes Diane-I agree.
I think there has to be a balance between presenting the "cold hard truth" and optimism. If a kid hears-this disease will kill you one day-might they think well I'm going to live high on the hog, so to speak (sorry I grew up on a farm) and not care for myself properly b/c I'm gonna die anyway? Optimism has to be stressed-environmental and emotional factors have to be included. Not all bodies are the same like Diane said.
I just think you should always end on a positive note. Kids are resilient but they have limits to what they can handle.

 

[Scarlett81]

Yes Diane-I agree.
I think there has to be a balance between presenting the "cold hard truth" and optimism. If a kid hears-this disease will kill you one day-might they think well I'm going to live high on the hog, so to speak (sorry I grew up on a farm) and not care for myself properly b/c I'm gonna die anyway? Optimism has to be stressed-environmental and emotional factors have to be included. Not all bodies are the same like Diane said.
I just think you should always end on a positive note. Kids are resilient but they have limits to what they can handle.

 

[anonymous]

Christian I am sitting here shakin' at the thought of the Dr kickin' me out of the appt. I can see that in my future!! LOL -- I can say that as a mom -- i always tell my girls that we are one heart because I am never away from them during any hospital visits, etc. My girls are starting to get older and I recently mentioned to the 13 yr old that one day when she is in the hopsital she might not want me to stay over. She told me I was crazy but ... I know the day will come when I am going to have to cut the umbiblical cord. Ouch -- it will really hurt!!

Anyway, back to the topic. I have NOT told my two girls they have a death sentence or the projected median age of survival.

However, they are getting to the ages (10 & 13) where they need to learn that they have to become responsible for their health. Therefore, I have told them about the repercussions of not doing their treatments and not taking their meds as prescribed. The 13 yr old is becoming more compliant as she grows up. As I am sure, the 10 year old will do also. They all have to be taught that there are results from their actions. This goes with everyone really ... walk in front of the car ... not good. Dont do your therapies ... not good either. It is all part of life and eventually the kids will realize that their involvement or lack of will make a difference!!!

Deb <img src="i/expressions/heart.gif" border="0">
Mom of 3 (Two w/CF)

 

[anonymous]

Christian I am sitting here shakin' at the thought of the Dr kickin' me out of the appt. I can see that in my future!! LOL -- I can say that as a mom -- i always tell my girls that we are one heart because I am never away from them during any hospital visits, etc. My girls are starting to get older and I recently mentioned to the 13 yr old that one day when she is in the hopsital she might not want me to stay over. She told me I was crazy but ... I know the day will come when I am going to have to cut the umbiblical cord. Ouch -- it will really hurt!!

Anyway, back to the topic. I have NOT told my two girls they have a death sentence or the projected median age of survival.

However, they are getting to the ages (10 & 13) where they need to learn that they have to become responsible for their health. Therefore, I have told them about the repercussions of not doing their treatments and not taking their meds as prescribed. The 13 yr old is becoming more compliant as she grows up. As I am sure, the 10 year old will do also. They all have to be taught that there are results from their actions. This goes with everyone really ... walk in front of the car ... not good. Dont do your therapies ... not good either. It is all part of life and eventually the kids will realize that their involvement or lack of will make a difference!!!

Deb <img src="i/expressions/heart.gif" border="0">
Mom of 3 (Two w/CF)

 

[anonymous]

Christian I am sitting here shakin' at the thought of the Dr kickin' me out of the appt. I can see that in my future!! LOL -- I can say that as a mom -- i always tell my girls that we are one heart because I am never away from them during any hospital visits, etc. My girls are starting to get older and I recently mentioned to the 13 yr old that one day when she is in the hopsital she might not want me to stay over. She told me I was crazy but ... I know the day will come when I am going to have to cut the umbiblical cord. Ouch -- it will really hurt!!

Anyway, back to the topic. I have NOT told my two girls they have a death sentence or the projected median age of survival.

However, they are getting to the ages (10 & 13) where they need to learn that they have to become responsible for their health. Therefore, I have told them about the repercussions of not doing their treatments and not taking their meds as prescribed. The 13 yr old is becoming more compliant as she grows up. As I am sure, the 10 year old will do also. They all have to be taught that there are results from their actions. This goes with everyone really ... walk in front of the car ... not good. Dont do your therapies ... not good either. It is all part of life and eventually the kids will realize that their involvement or lack of will make a difference!!!

Deb <img src="i/expressions/heart.gif" border="0">
Mom of 3 (Two w/CF)

 

[lemonstolemonade]

As a mom to an infant with CF, I had NEVER thought about this
issue. I hope the originator is getting some good info, I know I
sure am. I'm beginning to wonder when to discuss the issue with our
infant's sister (she's 2, doesn't have CF...it is way too early
anyway) and what to say about it. We don't want to shelter our
children so much that they do resent us later, but at the same
time, what a tightrope to have to walk balancing it all so as not
to leave a wake of destruction after "the
conversation."<br>
<br>
Thank you all for posting. I'm learning so much.<br>
<br>
Anne

 

[lemonstolemonade]

As a mom to an infant with CF, I had NEVER thought about this
issue. I hope the originator is getting some good info, I know I
sure am. I'm beginning to wonder when to discuss the issue with our
infant's sister (she's 2, doesn't have CF...it is way too early
anyway) and what to say about it. We don't want to shelter our
children so much that they do resent us later, but at the same
time, what a tightrope to have to walk balancing it all so as not
to leave a wake of destruction after "the
conversation."<br>
<br>
Thank you all for posting. I'm learning so much.<br>
<br>
Anne

 

[lemonstolemonade]

As a mom to an infant with CF, I had NEVER thought about this
issue. I hope the originator is getting some good info, I know I
sure am. I'm beginning to wonder when to discuss the issue with our
infant's sister (she's 2, doesn't have CF...it is way too early
anyway) and what to say about it. We don't want to shelter our
children so much that they do resent us later, but at the same
time, what a tightrope to have to walk balancing it all so as not
to leave a wake of destruction after "the
conversation."<br>
<br>
Thank you all for posting. I'm learning so much.<br>
<br>
Anne

 

[kayleesgrandma]

This is an interesting subject, one I've thought about quite alot. I still have mixed feelings, but there is some good advice here. I' wrestling witn how much information to let Kaylee's brother know. He's 7, and a total worry-wart. I think he will have an ulcer early in life. I have just let him know that Kaylee has a serious illness, must take her enzymes and do the vest. He's very protective of her, it's so precious sometimes to watch how he takes care of her. I imagine Kaylee will, over time, wonder why she gets sick, and has to do all her therapies. She's smart as a whip, so I think we'll need to tell her at some time early in her life. But I'm a little stuck at talking about death with a 5yr old. I know others of you have here, but I just can't do it right now. Please respect that. But thanks for all the different viewpoints.

 

[kayleesgrandma]

This is an interesting subject, one I've thought about quite alot. I still have mixed feelings, but there is some good advice here. I' wrestling witn how much information to let Kaylee's brother know. He's 7, and a total worry-wart. I think he will have an ulcer early in life. I have just let him know that Kaylee has a serious illness, must take her enzymes and do the vest. He's very protective of her, it's so precious sometimes to watch how he takes care of her. I imagine Kaylee will, over time, wonder why she gets sick, and has to do all her therapies. She's smart as a whip, so I think we'll need to tell her at some time early in her life. But I'm a little stuck at talking about death with a 5yr old. I know others of you have here, but I just can't do it right now. Please respect that. But thanks for all the different viewpoints.

 

[kayleesgrandma]

This is an interesting subject, one I've thought about quite alot. I still have mixed feelings, but there is some good advice here. I' wrestling witn how much information to let Kaylee's brother know. He's 7, and a total worry-wart. I think he will have an ulcer early in life. I have just let him know that Kaylee has a serious illness, must take her enzymes and do the vest. He's very protective of her, it's so precious sometimes to watch how he takes care of her. I imagine Kaylee will, over time, wonder why she gets sick, and has to do all her therapies. She's smart as a whip, so I think we'll need to tell her at some time early in her life. But I'm a little stuck at talking about death with a 5yr old. I know others of you have here, but I just can't do it right now. Please respect that. But thanks for all the different viewpoints.

 

[Kimmiek]

Yellowfrog,
I am sorry if I upset you, it was not my intention to do so. I read in here you were bothered somehow by the 2nd post, and I think that was me..


I wish you and your family all the best. And I do sincerely apologize.