Loving and and being a Caregiver to a CFer

LisaV

New member
Lance,
I am so much older than the other widows that what I might say may not help bring any clarity. And I am a parent of an adult daughter, so that is a bit different too.

I guess I would say to any parent that I have found that it works best to support the choices of your child. I am concerned that Talia says she is scared and unsure.

To Talia's Dad: I would suggest that you encourage Talia's to really focus on her feelings about this (rather than Lance's or yours). It is her life and her journey. On a decision like this she needs to be very very selfish so that when she looks back on her choices (life) she will feel OK with them and feel like she has lived her life and not someone elses. She needs to really explore what it might mean: perhaps to be childless, to be a young widow; to have to be a handson nurse to a husband, to have the extroardinary privledge of loving and being loved by someone until death parts them (an experience that will change her forever and for both better and worse put her most out of sync with her age mates)

While it is important to be there for others, it is also important not to pretend to be braver than we are. We have seen some folks "break" under the strain of marriage to a CFer and we would not want that for either Lance or Talia.

For myself, I went into my marriage (my 2nd marriage at age 42 already with an adult child) with my eyes wide open knowing I would be a widow before I retired. I have no regrets. My second husband had the gift of love and empathy. On his death bed I thanked him for giving me the unconditional love that no one else ever had.

If I had it to do over again, I would have loved him and lived with him until death parted us, but I am not sure I would have a civil marriage. By being married to me once he was really ill my husband became totally dependent on me for medical insurance and much of his income--and he had to put up with the indigity of having me do things for him (like bowel management) that he really hated unless we paid out of pocket for PCAs. I make a good living, but the expense was high and there were services he could have had (like PCAs paid for by Medicaid) if he had not actually been married to me but instead just living with me.

I know this isn't exactly what you were hoping for Lance, but I don't think this means that your relationship is "screwed".

Better to enter into it with everyone's feet on the ground if you want it to have the quality that you want and if you want it to last.

Keeping you all in my heart.
____
Edited to add: Here is a link to an article I wrote to help folks who were making the transition from being the well spouse of a chronically ill or disabled person to being a widow/widower. <a target=_blank class=ftalternatingbarlinklarge href="http://www.wellspouse.org/index.php?option=com_content&task=view&id=184&Itemid=36">http://www.wellspouse.org/inde...=view&id=184&Itemid=36</a> I think a careful read will help people discover a lot about what being a well spouse involves and how one changes because of it.
 

LisaV

New member
Lance,
I am so much older than the other widows that what I might say may not help bring any clarity. And I am a parent of an adult daughter, so that is a bit different too.

I guess I would say to any parent that I have found that it works best to support the choices of your child. I am concerned that Talia says she is scared and unsure.

To Talia's Dad: I would suggest that you encourage Talia's to really focus on her feelings about this (rather than Lance's or yours). It is her life and her journey. On a decision like this she needs to be very very selfish so that when she looks back on her choices (life) she will feel OK with them and feel like she has lived her life and not someone elses. She needs to really explore what it might mean: perhaps to be childless, to be a young widow; to have to be a handson nurse to a husband, to have the extroardinary privledge of loving and being loved by someone until death parts them (an experience that will change her forever and for both better and worse put her most out of sync with her age mates)

While it is important to be there for others, it is also important not to pretend to be braver than we are. We have seen some folks "break" under the strain of marriage to a CFer and we would not want that for either Lance or Talia.

For myself, I went into my marriage (my 2nd marriage at age 42 already with an adult child) with my eyes wide open knowing I would be a widow before I retired. I have no regrets. My second husband had the gift of love and empathy. On his death bed I thanked him for giving me the unconditional love that no one else ever had.

If I had it to do over again, I would have loved him and lived with him until death parted us, but I am not sure I would have a civil marriage. By being married to me once he was really ill my husband became totally dependent on me for medical insurance and much of his income--and he had to put up with the indigity of having me do things for him (like bowel management) that he really hated unless we paid out of pocket for PCAs. I make a good living, but the expense was high and there were services he could have had (like PCAs paid for by Medicaid) if he had not actually been married to me but instead just living with me.

I know this isn't exactly what you were hoping for Lance, but I don't think this means that your relationship is "screwed".

Better to enter into it with everyone's feet on the ground if you want it to have the quality that you want and if you want it to last.

Keeping you all in my heart.
____
Edited to add: Here is a link to an article I wrote to help folks who were making the transition from being the well spouse of a chronically ill or disabled person to being a widow/widower. <a target=_blank class=ftalternatingbarlinklarge href="http://www.wellspouse.org/index.php?option=com_content&task=view&id=184&Itemid=36">http://www.wellspouse.org/inde...=view&id=184&Itemid=36</a> I think a careful read will help people discover a lot about what being a well spouse involves and how one changes because of it.
 

LisaV

New member
Lance,
I am so much older than the other widows that what I might say may not help bring any clarity. And I am a parent of an adult daughter, so that is a bit different too.

I guess I would say to any parent that I have found that it works best to support the choices of your child. I am concerned that Talia says she is scared and unsure.

To Talia's Dad: I would suggest that you encourage Talia's to really focus on her feelings about this (rather than Lance's or yours). It is her life and her journey. On a decision like this she needs to be very very selfish so that when she looks back on her choices (life) she will feel OK with them and feel like she has lived her life and not someone elses. She needs to really explore what it might mean: perhaps to be childless, to be a young widow; to have to be a handson nurse to a husband, to have the extroardinary privledge of loving and being loved by someone until death parts them (an experience that will change her forever and for both better and worse put her most out of sync with her age mates)

While it is important to be there for others, it is also important not to pretend to be braver than we are. We have seen some folks "break" under the strain of marriage to a CFer and we would not want that for either Lance or Talia.

For myself, I went into my marriage (my 2nd marriage at age 42 already with an adult child) with my eyes wide open knowing I would be a widow before I retired. I have no regrets. My second husband had the gift of love and empathy. On his death bed I thanked him for giving me the unconditional love that no one else ever had.

If I had it to do over again, I would have loved him and lived with him until death parted us, but I am not sure I would have a civil marriage. By being married to me once he was really ill my husband became totally dependent on me for medical insurance and much of his income--and he had to put up with the indigity of having me do things for him (like bowel management) that he really hated unless we paid out of pocket for PCAs. I make a good living, but the expense was high and there were services he could have had (like PCAs paid for by Medicaid) if he had not actually been married to me but instead just living with me.

I know this isn't exactly what you were hoping for Lance, but I don't think this means that your relationship is "screwed".

Better to enter into it with everyone's feet on the ground if you want it to have the quality that you want and if you want it to last.

Keeping you all in my heart.
____
Edited to add: Here is a link to an article I wrote to help folks who were making the transition from being the well spouse of a chronically ill or disabled person to being a widow/widower. <a target=_blank class=ftalternatingbarlinklarge href="http://www.wellspouse.org/index.php?option=com_content&task=view&id=184&Itemid=36">http://www.wellspouse.org/inde...=view&id=184&Itemid=36</a> I think a careful read will help people discover a lot about what being a well spouse involves and how one changes because of it.
 

LisaV

New member
Lance,
I am so much older than the other widows that what I might say may not help bring any clarity. And I am a parent of an adult daughter, so that is a bit different too.

I guess I would say to any parent that I have found that it works best to support the choices of your child. I am concerned that Talia says she is scared and unsure.

To Talia's Dad: I would suggest that you encourage Talia's to really focus on her feelings about this (rather than Lance's or yours). It is her life and her journey. On a decision like this she needs to be very very selfish so that when she looks back on her choices (life) she will feel OK with them and feel like she has lived her life and not someone elses. She needs to really explore what it might mean: perhaps to be childless, to be a young widow; to have to be a handson nurse to a husband, to have the extroardinary privledge of loving and being loved by someone until death parts them (an experience that will change her forever and for both better and worse put her most out of sync with her age mates)

While it is important to be there for others, it is also important not to pretend to be braver than we are. We have seen some folks "break" under the strain of marriage to a CFer and we would not want that for either Lance or Talia.

For myself, I went into my marriage (my 2nd marriage at age 42 already with an adult child) with my eyes wide open knowing I would be a widow before I retired. I have no regrets. My second husband had the gift of love and empathy. On his death bed I thanked him for giving me the unconditional love that no one else ever had.

If I had it to do over again, I would have loved him and lived with him until death parted us, but I am not sure I would have a civil marriage. By being married to me once he was really ill my husband became totally dependent on me for medical insurance and much of his income--and he had to put up with the indigity of having me do things for him (like bowel management) that he really hated unless we paid out of pocket for PCAs. I make a good living, but the expense was high and there were services he could have had (like PCAs paid for by Medicaid) if he had not actually been married to me but instead just living with me.

I know this isn't exactly what you were hoping for Lance, but I don't think this means that your relationship is "screwed".

Better to enter into it with everyone's feet on the ground if you want it to have the quality that you want and if you want it to last.

Keeping you all in my heart.
____
Edited to add: Here is a link to an article I wrote to help folks who were making the transition from being the well spouse of a chronically ill or disabled person to being a widow/widower. <a target=_blank class=ftalternatingbarlinklarge href="http://www.wellspouse.org/index.php?option=com_content&task=view&id=184&Itemid=36">http://www.wellspouse.org/inde...=view&id=184&Itemid=36</a> I think a careful read will help people discover a lot about what being a well spouse involves and how one changes because of it.
 

LisaV

New member
Lance,
<br />I am so much older than the other widows that what I might say may not help bring any clarity. And I am a parent of an adult daughter, so that is a bit different too.
<br />
<br />I guess I would say to any parent that I have found that it works best to support the choices of your child. I am concerned that Talia says she is scared and unsure.
<br />
<br />To Talia's Dad: I would suggest that you encourage Talia's to really focus on her feelings about this (rather than Lance's or yours). It is her life and her journey. On a decision like this she needs to be very very selfish so that when she looks back on her choices (life) she will feel OK with them and feel like she has lived her life and not someone elses. She needs to really explore what it might mean: perhaps to be childless, to be a young widow; to have to be a handson nurse to a husband, to have the extroardinary privledge of loving and being loved by someone until death parts them (an experience that will change her forever and for both better and worse put her most out of sync with her age mates)
<br />
<br />While it is important to be there for others, it is also important not to pretend to be braver than we are. We have seen some folks "break" under the strain of marriage to a CFer and we would not want that for either Lance or Talia.
<br />
<br />For myself, I went into my marriage (my 2nd marriage at age 42 already with an adult child) with my eyes wide open knowing I would be a widow before I retired. I have no regrets. My second husband had the gift of love and empathy. On his death bed I thanked him for giving me the unconditional love that no one else ever had.
<br />
<br />If I had it to do over again, I would have loved him and lived with him until death parted us, but I am not sure I would have a civil marriage. By being married to me once he was really ill my husband became totally dependent on me for medical insurance and much of his income--and he had to put up with the indigity of having me do things for him (like bowel management) that he really hated unless we paid out of pocket for PCAs. I make a good living, but the expense was high and there were services he could have had (like PCAs paid for by Medicaid) if he had not actually been married to me but instead just living with me.
<br />
<br />I know this isn't exactly what you were hoping for Lance, but I don't think this means that your relationship is "screwed".
<br />
<br />Better to enter into it with everyone's feet on the ground if you want it to have the quality that you want and if you want it to last.
<br />
<br />Keeping you all in my heart.
<br />____
<br />Edited to add: Here is a link to an article I wrote to help folks who were making the transition from being the well spouse of a chronically ill or disabled person to being a widow/widower. <a target=_blank class=ftalternatingbarlinklarge href="http://www.wellspouse.org/index.php?option=com_content&task=view&id=184&Itemid=36">http://www.wellspouse.org/inde...=view&id=184&Itemid=36</a> I think a careful read will help people discover a lot about what being a well spouse involves and how one changes because of it.
<br />
<br />
 

bittyhorse23

New member
Lance

I am not a spouse I am the one with CF but I wanted to respond anyway.

I can totally understand their fears for their daughter. It is something most parents fear for their children when they marry, only when they marry a CFer that fear is much more realistic. However, I also think that if she loves you and wants to spend her life with you, they should let her.

CF is not easy, not for anyone involved. I respect her admitting she is not sure she is up for the challenge. It means she truly understands what is in store.

None of us are sure of our fate. She could marry a "healthy" man only to have him die from a freak accident.

Having CF makes you respect life and love that much more. We realize just how fragile and special life is.

I know it isn't much but I hope it helps a little.

Good Luck!!!

<img src="i/expressions/heart.gif" border="0">
 

bittyhorse23

New member
Lance

I am not a spouse I am the one with CF but I wanted to respond anyway.

I can totally understand their fears for their daughter. It is something most parents fear for their children when they marry, only when they marry a CFer that fear is much more realistic. However, I also think that if she loves you and wants to spend her life with you, they should let her.

CF is not easy, not for anyone involved. I respect her admitting she is not sure she is up for the challenge. It means she truly understands what is in store.

None of us are sure of our fate. She could marry a "healthy" man only to have him die from a freak accident.

Having CF makes you respect life and love that much more. We realize just how fragile and special life is.

I know it isn't much but I hope it helps a little.

Good Luck!!!

<img src="i/expressions/heart.gif" border="0">
 

bittyhorse23

New member
Lance

I am not a spouse I am the one with CF but I wanted to respond anyway.

I can totally understand their fears for their daughter. It is something most parents fear for their children when they marry, only when they marry a CFer that fear is much more realistic. However, I also think that if she loves you and wants to spend her life with you, they should let her.

CF is not easy, not for anyone involved. I respect her admitting she is not sure she is up for the challenge. It means she truly understands what is in store.

None of us are sure of our fate. She could marry a "healthy" man only to have him die from a freak accident.

Having CF makes you respect life and love that much more. We realize just how fragile and special life is.

I know it isn't much but I hope it helps a little.

Good Luck!!!

<img src="i/expressions/heart.gif" border="0">
 

bittyhorse23

New member
Lance

I am not a spouse I am the one with CF but I wanted to respond anyway.

I can totally understand their fears for their daughter. It is something most parents fear for their children when they marry, only when they marry a CFer that fear is much more realistic. However, I also think that if she loves you and wants to spend her life with you, they should let her.

CF is not easy, not for anyone involved. I respect her admitting she is not sure she is up for the challenge. It means she truly understands what is in store.

None of us are sure of our fate. She could marry a "healthy" man only to have him die from a freak accident.

Having CF makes you respect life and love that much more. We realize just how fragile and special life is.

I know it isn't much but I hope it helps a little.

Good Luck!!!

<img src="i/expressions/heart.gif" border="0">
 

bittyhorse23

New member
Lance
<br />
<br />I am not a spouse I am the one with CF but I wanted to respond anyway.
<br />
<br />I can totally understand their fears for their daughter. It is something most parents fear for their children when they marry, only when they marry a CFer that fear is much more realistic. However, I also think that if she loves you and wants to spend her life with you, they should let her.
<br />
<br />CF is not easy, not for anyone involved. I respect her admitting she is not sure she is up for the challenge. It means she truly understands what is in store.
<br />
<br />None of us are sure of our fate. She could marry a "healthy" man only to have him die from a freak accident.
<br />
<br />Having CF makes you respect life and love that much more. We realize just how fragile and special life is.
<br />
<br />I know it isn't much but I hope it helps a little.
<br />
<br />Good Luck!!!
<br />
<br /><img src="i/expressions/heart.gif" border="0">
 

laulau555

New member
Never let anyone get in the way of love. I've been with my boyfriend for 3 years, and if anything, cf has brought us closer. He endures just as much "pain and suffering" as i do, but thats what makes our love so strong. He has learned to appreciate life more, and to enjoy every moment, because thats what we CFers are all about right?! Your girlfriend's parents shouldn't be worried about her becoming a widow... no one says cf is going to kill you any faster than a car accident would, especially with all the new treatments. You should talk to her parents, and tell them honestly how positive a life of cf is, its not just a disease, its a way of life, that spreads to everyone who walks into it (in a good way)!
 

laulau555

New member
Never let anyone get in the way of love. I've been with my boyfriend for 3 years, and if anything, cf has brought us closer. He endures just as much "pain and suffering" as i do, but thats what makes our love so strong. He has learned to appreciate life more, and to enjoy every moment, because thats what we CFers are all about right?! Your girlfriend's parents shouldn't be worried about her becoming a widow... no one says cf is going to kill you any faster than a car accident would, especially with all the new treatments. You should talk to her parents, and tell them honestly how positive a life of cf is, its not just a disease, its a way of life, that spreads to everyone who walks into it (in a good way)!
 

laulau555

New member
Never let anyone get in the way of love. I've been with my boyfriend for 3 years, and if anything, cf has brought us closer. He endures just as much "pain and suffering" as i do, but thats what makes our love so strong. He has learned to appreciate life more, and to enjoy every moment, because thats what we CFers are all about right?! Your girlfriend's parents shouldn't be worried about her becoming a widow... no one says cf is going to kill you any faster than a car accident would, especially with all the new treatments. You should talk to her parents, and tell them honestly how positive a life of cf is, its not just a disease, its a way of life, that spreads to everyone who walks into it (in a good way)!
 

laulau555

New member
Never let anyone get in the way of love. I've been with my boyfriend for 3 years, and if anything, cf has brought us closer. He endures just as much "pain and suffering" as i do, but thats what makes our love so strong. He has learned to appreciate life more, and to enjoy every moment, because thats what we CFers are all about right?! Your girlfriend's parents shouldn't be worried about her becoming a widow... no one says cf is going to kill you any faster than a car accident would, especially with all the new treatments. You should talk to her parents, and tell them honestly how positive a life of cf is, its not just a disease, its a way of life, that spreads to everyone who walks into it (in a good way)!
 

laulau555

New member
Never let anyone get in the way of love. I've been with my boyfriend for 3 years, and if anything, cf has brought us closer. He endures just as much "pain and suffering" as i do, but thats what makes our love so strong. He has learned to appreciate life more, and to enjoy every moment, because thats what we CFers are all about right?! Your girlfriend's parents shouldn't be worried about her becoming a widow... no one says cf is going to kill you any faster than a car accident would, especially with all the new treatments. You should talk to her parents, and tell them honestly how positive a life of cf is, its not just a disease, its a way of life, that spreads to everyone who walks into it (in a good way)!
 

lightNlife

New member
This is an interesting position you find yourself in. I'm sure it must be weighing on you quite heavily.

When I was dating my husband, I often worried about what his parents would think. I thought they'd not want their son to marry someone who's lifespan was questionable.

What I can offer you by way of advice is that a letter is probably not going to have the same impact that an in-person conversation would. Also, remember that actions speak louder than words. I think your potential in-laws will have a much better reception of you if you can demonstrate that you're doing everything in your power to provide for your girl's needs. You need to prove that you're man enough to be married, and let your girl's dad see for himself that you are not his daughter's "puppy project."

Perhaps you want to show them this video of me and my husband:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
The part I think is particularly touching is when my husband says that there are things about CF that no one wants in their life, but there's a woman he wants in his life. I think if your girlfriend feels the same about you, that you're the man she wants in her life, then her parents will see that.

It's scary to go out on that limb and wait for the feedback from the folks. If you both can handle it with grace, courage and maturity, then I say go for it.
 

lightNlife

New member
This is an interesting position you find yourself in. I'm sure it must be weighing on you quite heavily.

When I was dating my husband, I often worried about what his parents would think. I thought they'd not want their son to marry someone who's lifespan was questionable.

What I can offer you by way of advice is that a letter is probably not going to have the same impact that an in-person conversation would. Also, remember that actions speak louder than words. I think your potential in-laws will have a much better reception of you if you can demonstrate that you're doing everything in your power to provide for your girl's needs. You need to prove that you're man enough to be married, and let your girl's dad see for himself that you are not his daughter's "puppy project."

Perhaps you want to show them this video of me and my husband:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
The part I think is particularly touching is when my husband says that there are things about CF that no one wants in their life, but there's a woman he wants in his life. I think if your girlfriend feels the same about you, that you're the man she wants in her life, then her parents will see that.

It's scary to go out on that limb and wait for the feedback from the folks. If you both can handle it with grace, courage and maturity, then I say go for it.
 

lightNlife

New member
This is an interesting position you find yourself in. I'm sure it must be weighing on you quite heavily.

When I was dating my husband, I often worried about what his parents would think. I thought they'd not want their son to marry someone who's lifespan was questionable.

What I can offer you by way of advice is that a letter is probably not going to have the same impact that an in-person conversation would. Also, remember that actions speak louder than words. I think your potential in-laws will have a much better reception of you if you can demonstrate that you're doing everything in your power to provide for your girl's needs. You need to prove that you're man enough to be married, and let your girl's dad see for himself that you are not his daughter's "puppy project."

Perhaps you want to show them this video of me and my husband:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
The part I think is particularly touching is when my husband says that there are things about CF that no one wants in their life, but there's a woman he wants in his life. I think if your girlfriend feels the same about you, that you're the man she wants in her life, then her parents will see that.

It's scary to go out on that limb and wait for the feedback from the folks. If you both can handle it with grace, courage and maturity, then I say go for it.
 

lightNlife

New member
This is an interesting position you find yourself in. I'm sure it must be weighing on you quite heavily.

When I was dating my husband, I often worried about what his parents would think. I thought they'd not want their son to marry someone who's lifespan was questionable.

What I can offer you by way of advice is that a letter is probably not going to have the same impact that an in-person conversation would. Also, remember that actions speak louder than words. I think your potential in-laws will have a much better reception of you if you can demonstrate that you're doing everything in your power to provide for your girl's needs. You need to prove that you're man enough to be married, and let your girl's dad see for himself that you are not his daughter's "puppy project."

Perhaps you want to show them this video of me and my husband:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a>
The part I think is particularly touching is when my husband says that there are things about CF that no one wants in their life, but there's a woman he wants in his life. I think if your girlfriend feels the same about you, that you're the man she wants in her life, then her parents will see that.

It's scary to go out on that limb and wait for the feedback from the folks. If you both can handle it with grace, courage and maturity, then I say go for it.
 

lightNlife

New member
This is an interesting position you find yourself in. I'm sure it must be weighing on you quite heavily.
<br />
<br />When I was dating my husband, I often worried about what his parents would think. I thought they'd not want their son to marry someone who's lifespan was questionable.
<br />
<br />What I can offer you by way of advice is that a letter is probably not going to have the same impact that an in-person conversation would. Also, remember that actions speak louder than words. I think your potential in-laws will have a much better reception of you if you can demonstrate that you're doing everything in your power to provide for your girl's needs. You need to prove that you're man enough to be married, and let your girl's dad see for himself that you are not his daughter's "puppy project."
<br />
<br />Perhaps you want to show them this video of me and my husband:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/caregivers/lifestyle/sickness_health.jsp
">http://www.cfvoice.com/info/ca...e/sickness_health.jsp
</a><br />
<br />The part I think is particularly touching is when my husband says that there are things about CF that no one wants in their life, but there's a woman he wants in his life. I think if your girlfriend feels the same about you, that you're the man she wants in her life, then her parents will see that.
<br />
<br />It's scary to go out on that limb and wait for the feedback from the folks. If you both can handle it with grace, courage and maturity, then I say go for it.
 
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