A SENSITIVE ISSUE

[LisaV]

There's a subthread in here from some parents saying something like "I have never talked to him/her about the likelihood of an 'early' death. But even tho I haven't spoken to him/her about it. I know that he/she knows that. He/she has been so sick or had so many treatments that he/she <i>must</i> know that. Becuase he/she knows that, there is no need for me to talk with them about it. " . Also sometimes an idea that "it is really hard for me to initiate this talk (or to to talk about this at all) and it would be really hard for him/her to hear" that I have just decided <i>not</i> to talk about it".

As a widow (not a parent) I have not ever had the experience of not talking out loud about death with my child. But it was something that was hard for my husband and I to talk about (and, as adults, we both really did know about it and really did know that the other knew). Still when it did become a topic we did talk about it really was a relief. The possiblity of death was no longer the elephant in the living room. He no longer had to deal with our fears alone, but could express his fears to me so I would know when to give that kind of explicity support and understanding.

I would think it would be the same thing for kids/teeneagers with CF. That it would be helpful/important for them to be given "permission" to talk about the whole possible death thing with their parents.

So I am confused. Do you parents who haven't had "the talk" with your kids, really feel like your kids can share their fears about death with you? (I gather they are not doing so now - or you would havre sort had the talk.) Do you think because they don't share those fears with you that they do not have the fears? Or do you think that they haqve those fears but are just keeping those fears to themselves? And if they are just keeping those fears to themselves, are you OK with them being all alone with those fears?

Is there some way for a parent to give a kid permission to talk about their feelings about the possibility of their early death without having "the talk"? Without at least aksing "what do you make of the "staitistics" about CF (since you are so sure your kids all ready know)- how do you feel about things when you read those". Without at least sharing their own fears by saying sometime something like "I was really scared you were going to die during that last pneumonia" or "I am so glad you are so healthy, sometimes when I see the statistics about CF I sort of get frightened" .

I waited to ask my mom about pleasure and sex until I knew the facts and just wondered shy she was so sqjuirrely about talking about it - sort of just to put her on the spot (asked "I know the facts of having sex, but <i>why</i> would anyone do that if they didn't want babies?) Watching her discomforit comfirmed for me that it was a topic she just couldn't talk about - especially to talk about the stuff that was finally the most important to me.

I think about the article I posted earlier where Harriet writes "I didn't know the word, but I knew my mother as in 'denial'." about her mom's comments to her when she was young. I think denial is an underrated coping mechanism. Maybe it is one that a parent can use forever - as long as their kid doesn't mess with it by sharing their fears? But It is a hard thing to decide to break through the denial of someone you love so if your kids think you are in denial they might not talk to you anyway. Denial finally isn't one that the CFer can really use for any length of time once it becomes really important for them to tak;e charge of their own treatments.

Anyway, can someone explain to me and to the orignal poster exactly WHY you think it is so emotionally healthy for parents to never talk about the statistics about shortened life with their teeneagers (at least) and are up on the web browsing around or in libraries where they can bump into statistics all of the time? Isn't not having the talk about lifespan with CF sort of like not having the sex and/or drug talk with your kid but letting your kid find out about these things from the "street" (but worse I think , because their "street" would not be older CFers but ignorant folks)

Wouldn't you as the parent want to be the one to frame the information instead of it just coming in some other way? Wouldn't being more open also allow you and your teenager to discuss qualifty of life issues as well as length of life issues? I know that the bottom line for all parents is pretty much that their job is to just keep the kid alive everything else be damned if it comes to that, but there is so much more to parenting - particularly to parenting a kid with CF. What quality of life is when you might not live as long as others is a question that folks with CF really wrestle with. (Do I go on straight to college or do I travel between high school and college while I still can. for sure?) Can you work with your teenager on this question if you don't even acknowledge to each other that a shortened lifespan is a possiblity? If you wait too long (until they are juniors or seniors) then the sheer trauma of it all can make it hard to make decisions (need time to integrate the truth in a safe setting first maybe?)

Are you not having the discussion because you really truly feel that having the facts is bad for your kid, or because denial is your main coping mechanism and you won't be able to do denial the same way once you've tolkd your kid the facts? I know you all want your kids to have a "normal" life . Do you think that will be impossible once they know the facts? Is it really ever possible for someone who has CF to have the exatly same life as someone who does not? Isn't the best we can do to just life the life we have fully? To do that, don't we have to know and accept the realities of our situation (which includes the realities of our physical health as well as financial sitatuions like insurance issues ) to accept both our strengths and our limitations?

 

[LisaV]

There's a subthread in here from some parents saying something like "I have never talked to him/her about the likelihood of an 'early' death. But even tho I haven't spoken to him/her about it. I know that he/she knows that. He/she has been so sick or had so many treatments that he/she <i>must</i> know that. Becuase he/she knows that, there is no need for me to talk with them about it. " . Also sometimes an idea that "it is really hard for me to initiate this talk (or to to talk about this at all) and it would be really hard for him/her to hear" that I have just decided <i>not</i> to talk about it".

As a widow (not a parent) I have not ever had the experience of not talking out loud about death with my child. But it was something that was hard for my husband and I to talk about (and, as adults, we both really did know about it and really did know that the other knew). Still when it did become a topic we did talk about it really was a relief. The possiblity of death was no longer the elephant in the living room. He no longer had to deal with our fears alone, but could express his fears to me so I would know when to give that kind of explicity support and understanding.

I would think it would be the same thing for kids/teeneagers with CF. That it would be helpful/important for them to be given "permission" to talk about the whole possible death thing with their parents.

So I am confused. Do you parents who haven't had "the talk" with your kids, really feel like your kids can share their fears about death with you? (I gather they are not doing so now - or you would havre sort had the talk.) Do you think because they don't share those fears with you that they do not have the fears? Or do you think that they haqve those fears but are just keeping those fears to themselves? And if they are just keeping those fears to themselves, are you OK with them being all alone with those fears?

Is there some way for a parent to give a kid permission to talk about their feelings about the possibility of their early death without having "the talk"? Without at least aksing "what do you make of the "staitistics" about CF (since you are so sure your kids all ready know)- how do you feel about things when you read those". Without at least sharing their own fears by saying sometime something like "I was really scared you were going to die during that last pneumonia" or "I am so glad you are so healthy, sometimes when I see the statistics about CF I sort of get frightened" .

I waited to ask my mom about pleasure and sex until I knew the facts and just wondered shy she was so sqjuirrely about talking about it - sort of just to put her on the spot (asked "I know the facts of having sex, but <i>why</i> would anyone do that if they didn't want babies?) Watching her discomforit comfirmed for me that it was a topic she just couldn't talk about - especially to talk about the stuff that was finally the most important to me.

I think about the article I posted earlier where Harriet writes "I didn't know the word, but I knew my mother as in 'denial'." about her mom's comments to her when she was young. I think denial is an underrated coping mechanism. Maybe it is one that a parent can use forever - as long as their kid doesn't mess with it by sharing their fears? But It is a hard thing to decide to break through the denial of someone you love so if your kids think you are in denial they might not talk to you anyway. Denial finally isn't one that the CFer can really use for any length of time once it becomes really important for them to tak;e charge of their own treatments.

Anyway, can someone explain to me and to the orignal poster exactly WHY you think it is so emotionally healthy for parents to never talk about the statistics about shortened life with their teeneagers (at least) and are up on the web browsing around or in libraries where they can bump into statistics all of the time? Isn't not having the talk about lifespan with CF sort of like not having the sex and/or drug talk with your kid but letting your kid find out about these things from the "street" (but worse I think , because their "street" would not be older CFers but ignorant folks)

Wouldn't you as the parent want to be the one to frame the information instead of it just coming in some other way? Wouldn't being more open also allow you and your teenager to discuss qualifty of life issues as well as length of life issues? I know that the bottom line for all parents is pretty much that their job is to just keep the kid alive everything else be damned if it comes to that, but there is so much more to parenting - particularly to parenting a kid with CF. What quality of life is when you might not live as long as others is a question that folks with CF really wrestle with. (Do I go on straight to college or do I travel between high school and college while I still can. for sure?) Can you work with your teenager on this question if you don't even acknowledge to each other that a shortened lifespan is a possiblity? If you wait too long (until they are juniors or seniors) then the sheer trauma of it all can make it hard to make decisions (need time to integrate the truth in a safe setting first maybe?)

Are you not having the discussion because you really truly feel that having the facts is bad for your kid, or because denial is your main coping mechanism and you won't be able to do denial the same way once you've tolkd your kid the facts? I know you all want your kids to have a "normal" life . Do you think that will be impossible once they know the facts? Is it really ever possible for someone who has CF to have the exatly same life as someone who does not? Isn't the best we can do to just life the life we have fully? To do that, don't we have to know and accept the realities of our situation (which includes the realities of our physical health as well as financial sitatuions like insurance issues ) to accept both our strengths and our limitations?

 

[LisaV]

There's a subthread in here from some parents saying something like "I have never talked to him/her about the likelihood of an 'early' death. But even tho I haven't spoken to him/her about it. I know that he/she knows that. He/she has been so sick or had so many treatments that he/she <i>must</i> know that. Becuase he/she knows that, there is no need for me to talk with them about it. " . Also sometimes an idea that "it is really hard for me to initiate this talk (or to to talk about this at all) and it would be really hard for him/her to hear" that I have just decided <i>not</i> to talk about it".

As a widow (not a parent) I have not ever had the experience of not talking out loud about death with my child. But it was something that was hard for my husband and I to talk about (and, as adults, we both really did know about it and really did know that the other knew). Still when it did become a topic we did talk about it really was a relief. The possiblity of death was no longer the elephant in the living room. He no longer had to deal with our fears alone, but could express his fears to me so I would know when to give that kind of explicity support and understanding.

I would think it would be the same thing for kids/teeneagers with CF. That it would be helpful/important for them to be given "permission" to talk about the whole possible death thing with their parents.

So I am confused. Do you parents who haven't had "the talk" with your kids, really feel like your kids can share their fears about death with you? (I gather they are not doing so now - or you would havre sort had the talk.) Do you think because they don't share those fears with you that they do not have the fears? Or do you think that they haqve those fears but are just keeping those fears to themselves? And if they are just keeping those fears to themselves, are you OK with them being all alone with those fears?

Is there some way for a parent to give a kid permission to talk about their feelings about the possibility of their early death without having "the talk"? Without at least aksing "what do you make of the "staitistics" about CF (since you are so sure your kids all ready know)- how do you feel about things when you read those". Without at least sharing their own fears by saying sometime something like "I was really scared you were going to die during that last pneumonia" or "I am so glad you are so healthy, sometimes when I see the statistics about CF I sort of get frightened" .

I waited to ask my mom about pleasure and sex until I knew the facts and just wondered shy she was so sqjuirrely about talking about it - sort of just to put her on the spot (asked "I know the facts of having sex, but <i>why</i> would anyone do that if they didn't want babies?) Watching her discomforit comfirmed for me that it was a topic she just couldn't talk about - especially to talk about the stuff that was finally the most important to me.

I think about the article I posted earlier where Harriet writes "I didn't know the word, but I knew my mother as in 'denial'." about her mom's comments to her when she was young. I think denial is an underrated coping mechanism. Maybe it is one that a parent can use forever - as long as their kid doesn't mess with it by sharing their fears? But It is a hard thing to decide to break through the denial of someone you love so if your kids think you are in denial they might not talk to you anyway. Denial finally isn't one that the CFer can really use for any length of time once it becomes really important for them to tak;e charge of their own treatments.

Anyway, can someone explain to me and to the orignal poster exactly WHY you think it is so emotionally healthy for parents to never talk about the statistics about shortened life with their teeneagers (at least) and are up on the web browsing around or in libraries where they can bump into statistics all of the time? Isn't not having the talk about lifespan with CF sort of like not having the sex and/or drug talk with your kid but letting your kid find out about these things from the "street" (but worse I think , because their "street" would not be older CFers but ignorant folks)

Wouldn't you as the parent want to be the one to frame the information instead of it just coming in some other way? Wouldn't being more open also allow you and your teenager to discuss qualifty of life issues as well as length of life issues? I know that the bottom line for all parents is pretty much that their job is to just keep the kid alive everything else be damned if it comes to that, but there is so much more to parenting - particularly to parenting a kid with CF. What quality of life is when you might not live as long as others is a question that folks with CF really wrestle with. (Do I go on straight to college or do I travel between high school and college while I still can. for sure?) Can you work with your teenager on this question if you don't even acknowledge to each other that a shortened lifespan is a possiblity? If you wait too long (until they are juniors or seniors) then the sheer trauma of it all can make it hard to make decisions (need time to integrate the truth in a safe setting first maybe?)

Are you not having the discussion because you really truly feel that having the facts is bad for your kid, or because denial is your main coping mechanism and you won't be able to do denial the same way once you've tolkd your kid the facts? I know you all want your kids to have a "normal" life . Do you think that will be impossible once they know the facts? Is it really ever possible for someone who has CF to have the exatly same life as someone who does not? Isn't the best we can do to just life the life we have fully? To do that, don't we have to know and accept the realities of our situation (which includes the realities of our physical health as well as financial sitatuions like insurance issues ) to accept both our strengths and our limitations?

 

[Jane]

Good question LisaV,

In our case, we have always been open about CF, (except the life expectancy number) but we share information when appropriate for their age or emotional state. My kids know it is a serious illness, they know people stay healthier when they do their treatments and they know people who have died from it.

When Josh was in 7th grade, he chose to do a report for health class on CF. His health teacher called me, horrified to think that while researching he may discover something we don't want him to know. The sites he used from the school's list of health sites were rather generic, so "the number" was not listed, but we took it as an opportunity to talk about his research as a family.

When Josh was so sick last year with the events surrounding the rare myco-bacteria, we talked a lot about the uncertain future with the family and the doctors. Of course we remained optimistic about it, but Josh was overwhelmed and very unstable emotionally (anxiety and depression) so we decided to stop including him in the "what if" conversations and present news to him when it became more concrete. This is the part about knowing your own child when making decisions about how much to disclose.

Every family has to make these choices for themselves based on what they feel will be best for their kids. Unfortunately its trial and error and no parent makes the wisest choice all the time. Its part of being a parent.

 

[Jane]

Good question LisaV,

In our case, we have always been open about CF, (except the life expectancy number) but we share information when appropriate for their age or emotional state. My kids know it is a serious illness, they know people stay healthier when they do their treatments and they know people who have died from it.

When Josh was in 7th grade, he chose to do a report for health class on CF. His health teacher called me, horrified to think that while researching he may discover something we don't want him to know. The sites he used from the school's list of health sites were rather generic, so "the number" was not listed, but we took it as an opportunity to talk about his research as a family.

When Josh was so sick last year with the events surrounding the rare myco-bacteria, we talked a lot about the uncertain future with the family and the doctors. Of course we remained optimistic about it, but Josh was overwhelmed and very unstable emotionally (anxiety and depression) so we decided to stop including him in the "what if" conversations and present news to him when it became more concrete. This is the part about knowing your own child when making decisions about how much to disclose.

Every family has to make these choices for themselves based on what they feel will be best for their kids. Unfortunately its trial and error and no parent makes the wisest choice all the time. Its part of being a parent.

 

[Jane]

Good question LisaV,

In our case, we have always been open about CF, (except the life expectancy number) but we share information when appropriate for their age or emotional state. My kids know it is a serious illness, they know people stay healthier when they do their treatments and they know people who have died from it.

When Josh was in 7th grade, he chose to do a report for health class on CF. His health teacher called me, horrified to think that while researching he may discover something we don't want him to know. The sites he used from the school's list of health sites were rather generic, so "the number" was not listed, but we took it as an opportunity to talk about his research as a family.

When Josh was so sick last year with the events surrounding the rare myco-bacteria, we talked a lot about the uncertain future with the family and the doctors. Of course we remained optimistic about it, but Josh was overwhelmed and very unstable emotionally (anxiety and depression) so we decided to stop including him in the "what if" conversations and present news to him when it became more concrete. This is the part about knowing your own child when making decisions about how much to disclose.

Every family has to make these choices for themselves based on what they feel will be best for their kids. Unfortunately its trial and error and no parent makes the wisest choice all the time. Its part of being a parent.

 

[LisaV]

thanks, jane.
It is so individual. Yet this question and the responses to it bring to mind that maybe the hardest part of CF is the emotional part (for all). You mention your son's anxiety and depression - which I think I know from my husband and nieces.
It is so hard as a family member to know how to help with this.

Yet having feelings about the diagnosis and the progressive nature of the illness (including being anxious and depressed) seems so very normal. I would think that it is key to living a full life in the long run to both have "the facts" about the progressive nature of the illness and have discussions based on those while staying stable enough emotionally to be able to "function" fully.

I know that as an adult what made my husband the craziest was folks talking behind his back (or right outside his room) about his condition and treatments. He'd scream at them that it was his body and his decisions. (Which, of course, as an adult was more than true.) As you are all "growing" your kids to become independent adults, at what point do you not only include them in all of the discussions, but stop going yourself (unless invited)?

 

[LisaV]

thanks, jane.
It is so individual. Yet this question and the responses to it bring to mind that maybe the hardest part of CF is the emotional part (for all). You mention your son's anxiety and depression - which I think I know from my husband and nieces.
It is so hard as a family member to know how to help with this.

Yet having feelings about the diagnosis and the progressive nature of the illness (including being anxious and depressed) seems so very normal. I would think that it is key to living a full life in the long run to both have "the facts" about the progressive nature of the illness and have discussions based on those while staying stable enough emotionally to be able to "function" fully.

I know that as an adult what made my husband the craziest was folks talking behind his back (or right outside his room) about his condition and treatments. He'd scream at them that it was his body and his decisions. (Which, of course, as an adult was more than true.) As you are all "growing" your kids to become independent adults, at what point do you not only include them in all of the discussions, but stop going yourself (unless invited)?

 

[LisaV]

thanks, jane.
It is so individual. Yet this question and the responses to it bring to mind that maybe the hardest part of CF is the emotional part (for all). You mention your son's anxiety and depression - which I think I know from my husband and nieces.
It is so hard as a family member to know how to help with this.

Yet having feelings about the diagnosis and the progressive nature of the illness (including being anxious and depressed) seems so very normal. I would think that it is key to living a full life in the long run to both have "the facts" about the progressive nature of the illness and have discussions based on those while staying stable enough emotionally to be able to "function" fully.

I know that as an adult what made my husband the craziest was folks talking behind his back (or right outside his room) about his condition and treatments. He'd scream at them that it was his body and his decisions. (Which, of course, as an adult was more than true.) As you are all "growing" your kids to become independent adults, at what point do you not only include them in all of the discussions, but stop going yourself (unless invited)?

 

[welshgirl]

lisa , my son is only 8 yrs old,at the moment he has no idea that he will more than likely die earlier than most people. if a see any sign in him that he is ready to know more we will tell him as best as we can. it is a very tricky situation for all of us. i just want him to enjoy his childhood as much as he can , while he can, i mean really,how can a child be happy if they know they are going to die prematurely?

 

[welshgirl]

lisa , my son is only 8 yrs old,at the moment he has no idea that he will more than likely die earlier than most people. if a see any sign in him that he is ready to know more we will tell him as best as we can. it is a very tricky situation for all of us. i just want him to enjoy his childhood as much as he can , while he can, i mean really,how can a child be happy if they know they are going to die prematurely?

 

[welshgirl]

lisa , my son is only 8 yrs old,at the moment he has no idea that he will more than likely die earlier than most people. if a see any sign in him that he is ready to know more we will tell him as best as we can. it is a very tricky situation for all of us. i just want him to enjoy his childhood as much as he can , while he can, i mean really,how can a child be happy if they know they are going to die prematurely?

 

[Scarlett81]

Ooh, Lisa good question. That's more of a caregiver question, but as a patient I thought I'd give my perspective too. I remember at 16 or 17 my office visits drove me crazy! My mothers presence was so overpowering-I just sat there, the guinea pig. She dominated the question asking, and orchestrated the whole visit. Now of course I'm not saying that's not the parents job, up to an age it is. And my mom did the best she knew to do at the time.

But I distinctly remember being 17 and we went to an appointment-when we got there they pulled my mom to the side and spoke to her. Then I went into the room alone while she waited outside. During it the doctor and nurse said-God, its so good to get you away from "that"-she's just too overpowering of a presence! And from now on we'd like to see you seperate from her. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

So there has to be a branching off at some point so the patient, even if they're still a young age-is given an opportunity to develop a relationship with the doc on their own. Their whole life will be dealing with doctors-they have to know how to do it responsibly. Give them part of the wheel.

As for the issue of telling kids all about their prognosis-I still think it depends on each circumstance. I do think they should know, but I don't see it to be a one size fits all jacket. (Again, being an adopted kid that came from an abusive background-if my mom had told me too young, another blow to my "world" would have been VERY bad. I'm glad I didn't know till I was older)

Hopefully if a kid knows, they'll be more motivated to care for themselves properly. Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. That's why I feel the whole picture should be considered when telling them. Not just ok, they're 6 now-tell them. Consider each child's personality and coping skills, and all the other things they're dealing with in their young life at that time.

 

[Scarlett81]

Ooh, Lisa good question. That's more of a caregiver question, but as a patient I thought I'd give my perspective too. I remember at 16 or 17 my office visits drove me crazy! My mothers presence was so overpowering-I just sat there, the guinea pig. She dominated the question asking, and orchestrated the whole visit. Now of course I'm not saying that's not the parents job, up to an age it is. And my mom did the best she knew to do at the time.

But I distinctly remember being 17 and we went to an appointment-when we got there they pulled my mom to the side and spoke to her. Then I went into the room alone while she waited outside. During it the doctor and nurse said-God, its so good to get you away from "that"-she's just too overpowering of a presence! And from now on we'd like to see you seperate from her. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

So there has to be a branching off at some point so the patient, even if they're still a young age-is given an opportunity to develop a relationship with the doc on their own. Their whole life will be dealing with doctors-they have to know how to do it responsibly. Give them part of the wheel.

As for the issue of telling kids all about their prognosis-I still think it depends on each circumstance. I do think they should know, but I don't see it to be a one size fits all jacket. (Again, being an adopted kid that came from an abusive background-if my mom had told me too young, another blow to my "world" would have been VERY bad. I'm glad I didn't know till I was older)

Hopefully if a kid knows, they'll be more motivated to care for themselves properly. Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. That's why I feel the whole picture should be considered when telling them. Not just ok, they're 6 now-tell them. Consider each child's personality and coping skills, and all the other things they're dealing with in their young life at that time.

 

[Scarlett81]

Ooh, Lisa good question. That's more of a caregiver question, but as a patient I thought I'd give my perspective too. I remember at 16 or 17 my office visits drove me crazy! My mothers presence was so overpowering-I just sat there, the guinea pig. She dominated the question asking, and orchestrated the whole visit. Now of course I'm not saying that's not the parents job, up to an age it is. And my mom did the best she knew to do at the time.

But I distinctly remember being 17 and we went to an appointment-when we got there they pulled my mom to the side and spoke to her. Then I went into the room alone while she waited outside. During it the doctor and nurse said-God, its so good to get you away from "that"-she's just too overpowering of a presence! And from now on we'd like to see you seperate from her. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

So there has to be a branching off at some point so the patient, even if they're still a young age-is given an opportunity to develop a relationship with the doc on their own. Their whole life will be dealing with doctors-they have to know how to do it responsibly. Give them part of the wheel.

As for the issue of telling kids all about their prognosis-I still think it depends on each circumstance. I do think they should know, but I don't see it to be a one size fits all jacket. (Again, being an adopted kid that came from an abusive background-if my mom had told me too young, another blow to my "world" would have been VERY bad. I'm glad I didn't know till I was older)

Hopefully if a kid knows, they'll be more motivated to care for themselves properly. Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. That's why I feel the whole picture should be considered when telling them. Not just ok, they're 6 now-tell them. Consider each child's personality and coping skills, and all the other things they're dealing with in their young life at that time.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

... Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. ...</end quote></div>


I think seeing any loved one (but particularily your kid) go through that emotional process is very difficult. I am afraid as family members we are not given much support or preparation in how to do that. I suppose that is at least one reason (if not the major reason) why it is so difficult to figure out when/if to have "the conversation".

-LisaV

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

... Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. ...</end quote></div>


I think seeing any loved one (but particularily your kid) go through that emotional process is very difficult. I am afraid as family members we are not given much support or preparation in how to do that. I suppose that is at least one reason (if not the major reason) why it is so difficult to figure out when/if to have "the conversation".

-LisaV

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

... Even if they have to go through the phases of grief-denial, anger, acting out. Parents should be prepared for that. ...</end quote></div>


I think seeing any loved one (but particularily your kid) go through that emotional process is very difficult. I am afraid as family members we are not given much support or preparation in how to do that. I suppose that is at least one reason (if not the major reason) why it is so difficult to figure out when/if to have "the conversation".

-LisaV

 

[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.

 

[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.