Discussing life expectancy with your spouse

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wskirchner

New member
It's so funny, I'm going through my own issues this Spring into Summer and now Summer into Fall. My health has drastically declined and myself and my husband have really had to think this over. We had a family meeting at the hospital the last time we really had a good talk about it with me, my husband, my mom and my sister (my dad passed away 3 years ago). We sat down and talked about everything. Transplant, lobectomy, disability, etc. Suffice it to say it was not a fun conversation BUT necessary. My husband and I have been married for 4+ years and he is the optimist and I think this was good for him to come floating back to Earth a little and for my realistic self to grow a little wings (hope doesn't hurt anything). Anyway like everyone is saying; talk, plan, write it down and for goodness sakes get a living will!! And write down everything in your will. I recently started a blog to talk about CF life and the downhill slide and we invested in a video camera so everyone has videos of better days should things slide faster than expected. Plan, plan and LIVE while you can!!
 
B

Blessed4Times

New member
@ David - Thanks for the advice about a long term life plan. I think that's a much better way of thinking about the end stage of CF without getting overly emotional. This movie/reality moment was only the second one I've had in nearly 2 years and it was eye-opening because I am generally very optimistic about life. His health has fluctuated quite a bit in the last few years with FEV1's between 39-55% and it's hovering around 50% now. My goal is for him to retire within 2 years time and go on SSDI because I can't see his body holding up a full time work schedule much longer than that. His job is very high stress and he's exhausted every day as it is. Add that with CF and it doesn't make for a good combination. We live off of one income now which is difficult sometimes, but doable. I think because we have children we are always discussing goals for the kids, for us, for our house, my education, etc. on a regular basis. I agree with what you said about feeling "pressure" about CF related heath issues. Part of me thinks that my fiance wants to be the provider and be the head of our household as he is that he refuses to rest when his is sick. It's like his mind thinks he's the energizer bunny and his body fails him, resulting in quite a bit of frustration. In time I hope that not working will give him more peace and the necessary time he needs for all the therapy and medication.
 
B

Blessed4Times

New member
@ David - Thanks for the advice about a long term life plan. I think that's a much better way of thinking about the end stage of CF without getting overly emotional. This movie/reality moment was only the second one I've had in nearly 2 years and it was eye-opening because I am generally very optimistic about life. His health has fluctuated quite a bit in the last few years with FEV1's between 39-55% and it's hovering around 50% now. My goal is for him to retire within 2 years time and go on SSDI because I can't see his body holding up a full time work schedule much longer than that. His job is very high stress and he's exhausted every day as it is. Add that with CF and it doesn't make for a good combination. We live off of one income now which is difficult sometimes, but doable. I think because we have children we are always discussing goals for the kids, for us, for our house, my education, etc. on a regular basis. I agree with what you said about feeling "pressure" about CF related heath issues. Part of me thinks that my fiance wants to be the provider and be the head of our household as he is that he refuses to rest when his is sick. It's like his mind thinks he's the energizer bunny and his body fails him, resulting in quite a bit of frustration. In time I hope that not working will give him more peace and the necessary time he needs for all the therapy and medication.
 
B

Blessed4Times

New member
@ David - Thanks for the advice about a long term life plan. I think that's a much better way of thinking about the end stage of CF without getting overly emotional. This movie/reality moment was only the second one I've had in nearly 2 years and it was eye-opening because I am generally very optimistic about life. His health has fluctuated quite a bit in the last few years with FEV1's between 39-55% and it's hovering around 50% now. My goal is for him to retire within 2 years time and go on SSDI because I can't see his body holding up a full time work schedule much longer than that. His job is very high stress and he's exhausted every day as it is. Add that with CF and it doesn't make for a good combination. We live off of one income now which is difficult sometimes, but doable. I think because we have children we are always discussing goals for the kids, for us, for our house, my education, etc. on a regular basis. I agree with what you said about feeling "pressure" about CF related heath issues. Part of me thinks that my fiance wants to be the provider and be the head of our household as he is that he refuses to rest when his is sick. It's like his mind thinks he's the energizer bunny and his body fails him, resulting in quite a bit of frustration. In time I hope that not working will give him more peace and the necessary time he needs for all the therapy and medication.
 
L

ltlhook

New member
This is the "can't get away from it" conversation. You can avoid it but sooner or later it WILL be at your front door knocking. I was married for 7 years and with him for 5 years prior, a total of 13 years. He DID NOT want to talk about the inevitable, ever. His father commited suicide when my ex was 18 yrs old and days away from graduating high school. I think that always had something to do with it but reguardless he never wanted to talk about it. Notice I did say EX. We got divorced in 2005.

Anyway the reason I say all of that is I am now married to a great man who is willing to talk about anything whenever I want/need. He is more than I could ask for. He is also a medic in the Air Force so it helps that he knows medical stuff. He did have to think about all that marrying me would entail since he has 2 kids that he would bring into the marriage. He had to think about them. I'm thankfull that he was willing to take the chance. Being the one with CF it is hard to let someone love you because you know what you will put them through with CF. I know for me that I am not afraid to talk about dieing or to die but it is the thought of leaving everyone that I love. I don't want anyone to hurt or be sad. I would love to outlive everyone then I wouldn't have to worry about people being sad or hurt that I died.

We plan things in the future but know that things can always change. It goes the same way with my husband being in the Air Force. He can get short notice orders to deploy, which has happened. We take everyday that we get together and make the most of it. I am receive disability (SSDI). Pretty much everything is in my husbands name with "transfer upon death" to me, if he were to die before I do. We have everything set up to go through me if he dies and I will then disperse to the kids. I do have a life insrance right now through the military but when he retires I will not have that anymore. We have already decided that we both want to be cremated with a memorial service, no viewing. My mother knows my wishes so everyone is on board.

I could talk about this for a long time, so I will end it here.
 
L

ltlhook

New member
This is the "can't get away from it" conversation. You can avoid it but sooner or later it WILL be at your front door knocking. I was married for 7 years and with him for 5 years prior, a total of 13 years. He DID NOT want to talk about the inevitable, ever. His father commited suicide when my ex was 18 yrs old and days away from graduating high school. I think that always had something to do with it but reguardless he never wanted to talk about it. Notice I did say EX. We got divorced in 2005.

Anyway the reason I say all of that is I am now married to a great man who is willing to talk about anything whenever I want/need. He is more than I could ask for. He is also a medic in the Air Force so it helps that he knows medical stuff. He did have to think about all that marrying me would entail since he has 2 kids that he would bring into the marriage. He had to think about them. I'm thankfull that he was willing to take the chance. Being the one with CF it is hard to let someone love you because you know what you will put them through with CF. I know for me that I am not afraid to talk about dieing or to die but it is the thought of leaving everyone that I love. I don't want anyone to hurt or be sad. I would love to outlive everyone then I wouldn't have to worry about people being sad or hurt that I died.

We plan things in the future but know that things can always change. It goes the same way with my husband being in the Air Force. He can get short notice orders to deploy, which has happened. We take everyday that we get together and make the most of it. I am receive disability (SSDI). Pretty much everything is in my husbands name with "transfer upon death" to me, if he were to die before I do. We have everything set up to go through me if he dies and I will then disperse to the kids. I do have a life insrance right now through the military but when he retires I will not have that anymore. We have already decided that we both want to be cremated with a memorial service, no viewing. My mother knows my wishes so everyone is on board.

I could talk about this for a long time, so I will end it here.
 
L

ltlhook

New member
This is the "can't get away from it" conversation. You can avoid it but sooner or later it WILL be at your front door knocking. I was married for 7 years and with him for 5 years prior, a total of 13 years. He DID NOT want to talk about the inevitable, ever. His father commited suicide when my ex was 18 yrs old and days away from graduating high school. I think that always had something to do with it but reguardless he never wanted to talk about it. Notice I did say EX. We got divorced in 2005.
<br />
<br />Anyway the reason I say all of that is I am now married to a great man who is willing to talk about anything whenever I want/need. He is more than I could ask for. He is also a medic in the Air Force so it helps that he knows medical stuff. He did have to think about all that marrying me would entail since he has 2 kids that he would bring into the marriage. He had to think about them. I'm thankfull that he was willing to take the chance. Being the one with CF it is hard to let someone love you because you know what you will put them through with CF. I know for me that I am not afraid to talk about dieing or to die but it is the thought of leaving everyone that I love. I don't want anyone to hurt or be sad. I would love to outlive everyone then I wouldn't have to worry about people being sad or hurt that I died.
<br />
<br />We plan things in the future but know that things can always change. It goes the same way with my husband being in the Air Force. He can get short notice orders to deploy, which has happened. We take everyday that we get together and make the most of it. I am receive disability (SSDI). Pretty much everything is in my husbands name with "transfer upon death" to me, if he were to die before I do. We have everything set up to go through me if he dies and I will then disperse to the kids. I do have a life insrance right now through the military but when he retires I will not have that anymore. We have already decided that we both want to be cremated with a memorial service, no viewing. My mother knows my wishes so everyone is on board.
<br />
<br />I could talk about this for a long time, so I will end it here.
 
P

Printer

Active member
Blessed:
<br />
<br />There is a thread "CF's over 40" It is on the main page now. Read through it.
<br />
<br />Bill
 
T

TleighsHusband

Guest
Bless4times, we men do like to be that provider, and I would imagine that will be one of those things your husband will have to work through as his health progresses. Tiffany and I came to the conclusion that even though we worked hard at doing everything right (treatments, healthcare, schedule, etc.) that CF was progressive and chronic. We didn't let that get us down (or at least tried not to) but rather we allowed those realities to help us not get frustrated with what was happening with her health. It kept us from going down that dangerous road of feeling guilty when things got worse and helped her not feel guilty or depressed when she was not able to do as much.

Tiffany also struggled with putting her loved ones in such difficult situations with her health -- it always amazed her that people would love her knowing what they would have to go through. But I can tell you, I am so thankful that she opened her life to me and that we had an amazing marriage, friendship, and love.
 
T

TleighsHusband

Guest
Bless4times, we men do like to be that provider, and I would imagine that will be one of those things your husband will have to work through as his health progresses. Tiffany and I came to the conclusion that even though we worked hard at doing everything right (treatments, healthcare, schedule, etc.) that CF was progressive and chronic. We didn't let that get us down (or at least tried not to) but rather we allowed those realities to help us not get frustrated with what was happening with her health. It kept us from going down that dangerous road of feeling guilty when things got worse and helped her not feel guilty or depressed when she was not able to do as much.

Tiffany also struggled with putting her loved ones in such difficult situations with her health -- it always amazed her that people would love her knowing what they would have to go through. But I can tell you, I am so thankful that she opened her life to me and that we had an amazing marriage, friendship, and love.
 
T

TleighsHusband

Guest
Bless4times, we men do like to be that provider, and I would imagine that will be one of those things your husband will have to work through as his health progresses. Tiffany and I came to the conclusion that even though we worked hard at doing everything right (treatments, healthcare, schedule, etc.) that CF was progressive and chronic. We didn't let that get us down (or at least tried not to) but rather we allowed those realities to help us not get frustrated with what was happening with her health. It kept us from going down that dangerous road of feeling guilty when things got worse and helped her not feel guilty or depressed when she was not able to do as much.
<br />
<br />Tiffany also struggled with putting her loved ones in such difficult situations with her health -- it always amazed her that people would love her knowing what they would have to go through. But I can tell you, I am so thankful that she opened her life to me and that we had an amazing marriage, friendship, and love.
 
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