Frustrated with friends and family

[karismom]

YOU ARE NOT ALONE!!!!!!!!!!!!!!!!!!!!!!!!!!


my daughter has had TWO transplants and is very ill and does not have much time left, struggles every day to just survive one more day plus my only other daughter has cf as well and my ENTIRE family acts like it is no big deal!!! the nurses told me 25 yrs ago when kari was born not to expect our families to be there for us and they were SO right! my family even feels the need to judge the way that i am handling all of this, and my mother said to me after i found out that holli had cf as well "oh lisa get off the pity pot, everyone has problems in their life" i wanted to slap her so hard. i will write more on this subject later, i get so so mad that i have to cool down!!

lisa

 

[karismom]

YOU ARE NOT ALONE!!!!!!!!!!!!!!!!!!!!!!!!!!


my daughter has had TWO transplants and is very ill and does not have much time left, struggles every day to just survive one more day plus my only other daughter has cf as well and my ENTIRE family acts like it is no big deal!!! the nurses told me 25 yrs ago when kari was born not to expect our families to be there for us and they were SO right! my family even feels the need to judge the way that i am handling all of this, and my mother said to me after i found out that holli had cf as well "oh lisa get off the pity pot, everyone has problems in their life" i wanted to slap her so hard. i will write more on this subject later, i get so so mad that i have to cool down!!

lisa

 

[karismom]

YOU ARE NOT ALONE!!!!!!!!!!!!!!!!!!!!!!!!!!


my daughter has had TWO transplants and is very ill and does not have much time left, struggles every day to just survive one more day plus my only other daughter has cf as well and my ENTIRE family acts like it is no big deal!!! the nurses told me 25 yrs ago when kari was born not to expect our families to be there for us and they were SO right! my family even feels the need to judge the way that i am handling all of this, and my mother said to me after i found out that holli had cf as well "oh lisa get off the pity pot, everyone has problems in their life" i wanted to slap her so hard. i will write more on this subject later, i get so so mad that i have to cool down!!

lisa

 

[LisaV]

Friends and family (like me) will never feel what parents feel. It is not their child. They are not charged with protecting at all costs. We can be sad and worried - all of that -- but finally we get to go home. We are finally off the hook. While parents never are. Use us for what we're good for. Distraction. Someone (who can keep some semblence of calm) to reach out to when it gets too tough. Someone to give you respite. Someone to bring "normal" into the house.

Friends and family (including parents of young CFers) will never feel what spouses feel. Spouses need to be mutually respectful and the "well" spouse needs to let the CF spouse make their own decisiions. To parents who think of having total control this can look like disinterest or neglect. Parents of adult CFers might have a clue, but then maybe not since there is always the option of the adult CFer doing a short/longterm regression back to childhood ways of letting the parent take over.

I think we all need to let go of the idea that others are totally going to "get" what we feel and to give us what we want at any givien moment. Just ask for what you'd like and if you get it fine. If you don't then don't take it personally and instead take what folks can offer easily.

And tho' it isn't a very pretty thought, I think that parents abd spouses are sometimes angry and jealous that friends and family DO get to just leave the scene. They can have CF-free times anytime they want just by not having contact for a while. (And another not so pretty thought is that CFers are sometimes angy and jealous that their parents and spouses don't have the illness.) And sometimes parents and spouses and CFers can get a false sense of control. We think if we work harder we can beat the CF. And we think that if other family members would focus more of their energy on the CF that that would help beat the CF. But all that would do would be to wear out even more people in the family. All that would mean is that CF would have sucked more life out of others.

Finally there is only so much you can do to fight CF and so much energy that it deserves. We all need time for fun and laughter. There are times CF just plain needs to be ignored.

Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.

 

[LisaV]

Friends and family (like me) will never feel what parents feel. It is not their child. They are not charged with protecting at all costs. We can be sad and worried - all of that -- but finally we get to go home. We are finally off the hook. While parents never are. Use us for what we're good for. Distraction. Someone (who can keep some semblence of calm) to reach out to when it gets too tough. Someone to give you respite. Someone to bring "normal" into the house.

Friends and family (including parents of young CFers) will never feel what spouses feel. Spouses need to be mutually respectful and the "well" spouse needs to let the CF spouse make their own decisiions. To parents who think of having total control this can look like disinterest or neglect. Parents of adult CFers might have a clue, but then maybe not since there is always the option of the adult CFer doing a short/longterm regression back to childhood ways of letting the parent take over.

I think we all need to let go of the idea that others are totally going to "get" what we feel and to give us what we want at any givien moment. Just ask for what you'd like and if you get it fine. If you don't then don't take it personally and instead take what folks can offer easily.

And tho' it isn't a very pretty thought, I think that parents abd spouses are sometimes angry and jealous that friends and family DO get to just leave the scene. They can have CF-free times anytime they want just by not having contact for a while. (And another not so pretty thought is that CFers are sometimes angy and jealous that their parents and spouses don't have the illness.) And sometimes parents and spouses and CFers can get a false sense of control. We think if we work harder we can beat the CF. And we think that if other family members would focus more of their energy on the CF that that would help beat the CF. But all that would do would be to wear out even more people in the family. All that would mean is that CF would have sucked more life out of others.

Finally there is only so much you can do to fight CF and so much energy that it deserves. We all need time for fun and laughter. There are times CF just plain needs to be ignored.

Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.

 

[LisaV]

Friends and family (like me) will never feel what parents feel. It is not their child. They are not charged with protecting at all costs. We can be sad and worried - all of that -- but finally we get to go home. We are finally off the hook. While parents never are. Use us for what we're good for. Distraction. Someone (who can keep some semblence of calm) to reach out to when it gets too tough. Someone to give you respite. Someone to bring "normal" into the house.

Friends and family (including parents of young CFers) will never feel what spouses feel. Spouses need to be mutually respectful and the "well" spouse needs to let the CF spouse make their own decisiions. To parents who think of having total control this can look like disinterest or neglect. Parents of adult CFers might have a clue, but then maybe not since there is always the option of the adult CFer doing a short/longterm regression back to childhood ways of letting the parent take over.

I think we all need to let go of the idea that others are totally going to "get" what we feel and to give us what we want at any givien moment. Just ask for what you'd like and if you get it fine. If you don't then don't take it personally and instead take what folks can offer easily.

And tho' it isn't a very pretty thought, I think that parents abd spouses are sometimes angry and jealous that friends and family DO get to just leave the scene. They can have CF-free times anytime they want just by not having contact for a while. (And another not so pretty thought is that CFers are sometimes angy and jealous that their parents and spouses don't have the illness.) And sometimes parents and spouses and CFers can get a false sense of control. We think if we work harder we can beat the CF. And we think that if other family members would focus more of their energy on the CF that that would help beat the CF. But all that would do would be to wear out even more people in the family. All that would mean is that CF would have sucked more life out of others.

Finally there is only so much you can do to fight CF and so much energy that it deserves. We all need time for fun and laughter. There are times CF just plain needs to be ignored.

Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.

 

[JazzysMom]

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



Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.</end quote></div>



AMEN TO THAT!

 

[JazzysMom]

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



Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.</end quote></div>



AMEN TO THAT!

 

[JazzysMom]

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



Considering all the emotion that CF brings to a family and how little the system does to offer us support in dealing with that, I am sometimes amazed that we all do as well as we do.</end quote></div>



AMEN TO THAT!

 

[carbeau]

WOW i just read your post (I'm new to this site) and although I can't compare being a carrier (my husband and I are both carriers but our daughter is unaffected).............with what you are dealing with. Going through all the testing etc we always felt that nobody but us (and his sister as her son has CF) could really understand. We could only rely on one another and to this day my mother still doesn't believe I'm a carrier (I've been tested 2x......as the hospital had some problems with the med equipment and offered to retest me).

None of our friends ever wanted to talk to us about it and our family jsut kept telling us she wasn't positive. Thankfully they were right, but it would have been nice to actually have somone validate our feelings and emotions.

Maybe other people really can't empathize, now matter how hard they try.

 

[carbeau]

WOW i just read your post (I'm new to this site) and although I can't compare being a carrier (my husband and I are both carriers but our daughter is unaffected).............with what you are dealing with. Going through all the testing etc we always felt that nobody but us (and his sister as her son has CF) could really understand. We could only rely on one another and to this day my mother still doesn't believe I'm a carrier (I've been tested 2x......as the hospital had some problems with the med equipment and offered to retest me).

None of our friends ever wanted to talk to us about it and our family jsut kept telling us she wasn't positive. Thankfully they were right, but it would have been nice to actually have somone validate our feelings and emotions.

Maybe other people really can't empathize, now matter how hard they try.

 

[carbeau]

WOW i just read your post (I'm new to this site) and although I can't compare being a carrier (my husband and I are both carriers but our daughter is unaffected).............with what you are dealing with. Going through all the testing etc we always felt that nobody but us (and his sister as her son has CF) could really understand. We could only rely on one another and to this day my mother still doesn't believe I'm a carrier (I've been tested 2x......as the hospital had some problems with the med equipment and offered to retest me).

None of our friends ever wanted to talk to us about it and our family jsut kept telling us she wasn't positive. Thankfully they were right, but it would have been nice to actually have somone validate our feelings and emotions.

Maybe other people really can't empathize, now matter how hard they try.

 

[sweetwhite30]

I think it may be scary to some is why they rather change the subject.It also maybe uncomfortable to them to think about but either way family should be supportive and not go and back off and be distant but some eventually do or will,my husbands family is all jehovah witnesses and all they talk about is when there be no more sickness in the world and really dont touch on the subject much and i make no efforts to call them or anything ,they see their grandma about once every 6 to 8 months mind you she lives around the corner.When they get to talking about their beliefs and views it is hard not to get mad because i am facing the present with my child with c.f not how many ever yrs that they believe gods coming to wipe out sickness and no im not a jehovah witness and i can not stand when they start talking like that makes me mad because they are not dealing with today,the present but they are merely indulging on what could be the future. I have told them time and time again it sounds nice but i have to live for today for isaiah not the hope of what ever you believe and htye huff and puff and do not understand.....i have a friend who is my support system when i need a ear and this site as well now but it would be nice for the family to just be there and not shrug it off as if it is nothing to worry about.

 

[sweetwhite30]

I think it may be scary to some is why they rather change the subject.It also maybe uncomfortable to them to think about but either way family should be supportive and not go and back off and be distant but some eventually do or will,my husbands family is all jehovah witnesses and all they talk about is when there be no more sickness in the world and really dont touch on the subject much and i make no efforts to call them or anything ,they see their grandma about once every 6 to 8 months mind you she lives around the corner.When they get to talking about their beliefs and views it is hard not to get mad because i am facing the present with my child with c.f not how many ever yrs that they believe gods coming to wipe out sickness and no im not a jehovah witness and i can not stand when they start talking like that makes me mad because they are not dealing with today,the present but they are merely indulging on what could be the future. I have told them time and time again it sounds nice but i have to live for today for isaiah not the hope of what ever you believe and htye huff and puff and do not understand.....i have a friend who is my support system when i need a ear and this site as well now but it would be nice for the family to just be there and not shrug it off as if it is nothing to worry about.

 

[sweetwhite30]

I think it may be scary to some is why they rather change the subject.It also maybe uncomfortable to them to think about but either way family should be supportive and not go and back off and be distant but some eventually do or will,my husbands family is all jehovah witnesses and all they talk about is when there be no more sickness in the world and really dont touch on the subject much and i make no efforts to call them or anything ,they see their grandma about once every 6 to 8 months mind you she lives around the corner.When they get to talking about their beliefs and views it is hard not to get mad because i am facing the present with my child with c.f not how many ever yrs that they believe gods coming to wipe out sickness and no im not a jehovah witness and i can not stand when they start talking like that makes me mad because they are not dealing with today,the present but they are merely indulging on what could be the future. I have told them time and time again it sounds nice but i have to live for today for isaiah not the hope of what ever you believe and htye huff and puff and do not understand.....i have a friend who is my support system when i need a ear and this site as well now but it would be nice for the family to just be there and not shrug it off as if it is nothing to worry about.

 

[Mommafirst]

Weird that this topic got bumped up today. I was just coming on to see if I was alone with in-laws who just don't get it. I guess I'm not.

Alyssa was diagnosed with CF in July. So we saw them all in the days when we were just reeling from the diagnosis. My MIL did not say ONE word to me about it. Not a word of support, not a word of comfort, not a word of acknowledgement. Since then, she talks briefly with my hubby, but when she gets me on the phone, she just asks for my husband -- again since July NOT ONE friggin word of support. So today she mentions something about Alyssa looking "normal", and I said (and I promise it was not at all sarcastic), "Do you know anything about cystic fibrosis?" She says, "no, not really." So I say, "We have a basic book the CF center gave us that has some very simple explanations, would you like to borrow it." She says, "No, I'm comfortable with what I know." I then say, "Well maybe it would help, since you may be basing your expectations on some very outdated information, the CF world may have changed in the last decade or so." She says, "No, I really don't need to know anymore than she has fragile lungs." WTF???? Let me backtrack by saying she is not a stupid woman. Furthermore, she is a nurse. In fact, not just a nurse, but she teaches nursing at two different colleges, and is a few credits shy of a PhD in nursing. When my mother heard about the diagnosis she devoured every reading I gave her, as she wants to know what we are dealing with and how to help. But his mother, who should be MUCH more capable of managing this is acting like if she ignores its true then it will go away.

I heard her tell my husband (I was in the kitchen being the regular slave as she never picks up ONE dish to help when she's at our home) that his sister mentioned Alyssa might have had to go to the hospital this week. She said she wouldn't be able to see her in the hospital, she just couldn't cope with it. Yeah, and I can? She doesn't get to be the victim here. Yes, it stinks to have a grandaughter with cystic fibrosis -- but guess what? It stinks even more for it to be your daughter. Maybe she could offer a little support instead of making it all about herself. Like offer to help with the boys if Alyssa needed to go into the hospital, or even tell us she is praying for us and Alyssa, or SOMETHING EVEN A LITTLE BIT SUPPORTIVE!!! I can't make this a taboo topic forever, I don't want Alyssa to be different, but I also think its good to talk about it a bit.

 

[Mommafirst]

Weird that this topic got bumped up today. I was just coming on to see if I was alone with in-laws who just don't get it. I guess I'm not.

Alyssa was diagnosed with CF in July. So we saw them all in the days when we were just reeling from the diagnosis. My MIL did not say ONE word to me about it. Not a word of support, not a word of comfort, not a word of acknowledgement. Since then, she talks briefly with my hubby, but when she gets me on the phone, she just asks for my husband -- again since July NOT ONE friggin word of support. So today she mentions something about Alyssa looking "normal", and I said (and I promise it was not at all sarcastic), "Do you know anything about cystic fibrosis?" She says, "no, not really." So I say, "We have a basic book the CF center gave us that has some very simple explanations, would you like to borrow it." She says, "No, I'm comfortable with what I know." I then say, "Well maybe it would help, since you may be basing your expectations on some very outdated information, the CF world may have changed in the last decade or so." She says, "No, I really don't need to know anymore than she has fragile lungs." WTF???? Let me backtrack by saying she is not a stupid woman. Furthermore, she is a nurse. In fact, not just a nurse, but she teaches nursing at two different colleges, and is a few credits shy of a PhD in nursing. When my mother heard about the diagnosis she devoured every reading I gave her, as she wants to know what we are dealing with and how to help. But his mother, who should be MUCH more capable of managing this is acting like if she ignores its true then it will go away.

I heard her tell my husband (I was in the kitchen being the regular slave as she never picks up ONE dish to help when she's at our home) that his sister mentioned Alyssa might have had to go to the hospital this week. She said she wouldn't be able to see her in the hospital, she just couldn't cope with it. Yeah, and I can? She doesn't get to be the victim here. Yes, it stinks to have a grandaughter with cystic fibrosis -- but guess what? It stinks even more for it to be your daughter. Maybe she could offer a little support instead of making it all about herself. Like offer to help with the boys if Alyssa needed to go into the hospital, or even tell us she is praying for us and Alyssa, or SOMETHING EVEN A LITTLE BIT SUPPORTIVE!!! I can't make this a taboo topic forever, I don't want Alyssa to be different, but I also think its good to talk about it a bit.

 

[Mommafirst]

Weird that this topic got bumped up today. I was just coming on to see if I was alone with in-laws who just don't get it. I guess I'm not.

Alyssa was diagnosed with CF in July. So we saw them all in the days when we were just reeling from the diagnosis. My MIL did not say ONE word to me about it. Not a word of support, not a word of comfort, not a word of acknowledgement. Since then, she talks briefly with my hubby, but when she gets me on the phone, she just asks for my husband -- again since July NOT ONE friggin word of support. So today she mentions something about Alyssa looking "normal", and I said (and I promise it was not at all sarcastic), "Do you know anything about cystic fibrosis?" She says, "no, not really." So I say, "We have a basic book the CF center gave us that has some very simple explanations, would you like to borrow it." She says, "No, I'm comfortable with what I know." I then say, "Well maybe it would help, since you may be basing your expectations on some very outdated information, the CF world may have changed in the last decade or so." She says, "No, I really don't need to know anymore than she has fragile lungs." WTF???? Let me backtrack by saying she is not a stupid woman. Furthermore, she is a nurse. In fact, not just a nurse, but she teaches nursing at two different colleges, and is a few credits shy of a PhD in nursing. When my mother heard about the diagnosis she devoured every reading I gave her, as she wants to know what we are dealing with and how to help. But his mother, who should be MUCH more capable of managing this is acting like if she ignores its true then it will go away.

I heard her tell my husband (I was in the kitchen being the regular slave as she never picks up ONE dish to help when she's at our home) that his sister mentioned Alyssa might have had to go to the hospital this week. She said she wouldn't be able to see her in the hospital, she just couldn't cope with it. Yeah, and I can? She doesn't get to be the victim here. Yes, it stinks to have a grandaughter with cystic fibrosis -- but guess what? It stinks even more for it to be your daughter. Maybe she could offer a little support instead of making it all about herself. Like offer to help with the boys if Alyssa needed to go into the hospital, or even tell us she is praying for us and Alyssa, or SOMETHING EVEN A LITTLE BIT SUPPORTIVE!!! I can't make this a taboo topic forever, I don't want Alyssa to be different, but I also think its good to talk about it a bit.

 

[Ratatosk]

My folks are visiting and my mom once again is nagging me about how I should visit because my sister has never ever met her nephew. Well, she can sure as heck travel all over the countryside to visit high school friends and relatives that are a bit more well off, but when it comes to us --- nope. I even offered to send her an airline ticket.

Prior to DS's birth and subsequent CF diagnosis, I would've just let the guilt trips and backhanded comments slide. But I've changed. Life's too short. I just don't have the time or energy to deal with all the drama.

I feel bad for my dad 'cuz he loves seeing DS, but right now, I just can't handle flying by myself with DS --- drugs, compressor & vest as carryons, with flight changes. And they're the ones who moved 2000+ miles away. My mom has always been a bit of a hypochondriac and instead of getting to know my son, she's more focused on his illness. It's almost as if it's a great coup for her -- "pay attention to me. My grandchild has a horrible disease"

 

[Ratatosk]

My folks are visiting and my mom once again is nagging me about how I should visit because my sister has never ever met her nephew. Well, she can sure as heck travel all over the countryside to visit high school friends and relatives that are a bit more well off, but when it comes to us --- nope. I even offered to send her an airline ticket.

Prior to DS's birth and subsequent CF diagnosis, I would've just let the guilt trips and backhanded comments slide. But I've changed. Life's too short. I just don't have the time or energy to deal with all the drama.

I feel bad for my dad 'cuz he loves seeing DS, but right now, I just can't handle flying by myself with DS --- drugs, compressor & vest as carryons, with flight changes. And they're the ones who moved 2000+ miles away. My mom has always been a bit of a hypochondriac and instead of getting to know my son, she's more focused on his illness. It's almost as if it's a great coup for her -- "pay attention to me. My grandchild has a horrible disease"