Looking for advice

[wallflower]

Seriously, though, I have a question for you cfers out there. For the last couple of months, my bf and I have been talking about what a future with cf could be. I try to be pretty real about it and not sugar coat anything, but it is something that we both worry about.

I have been very well most of my life, and he has never seen me sick in the almost 4 years we've been together. Maybe I'll never get sick, maybe I will. The thing I am trying to figure out, is how fair is it to put him through all those years of uncertanty? Not only watching me get sick and possibly die, but the financial aspect of it too. When you get to your late 30's, you tend to look more closely at things like retirement and limited income.

I worry about when I reach the point I won't be able to work anymore, and wont have an income, and possibly insurance. I know there is SSDI, but experience has taught me not to count on the government.

I know that 'love can conquer anything' and all that stuff, but is it really right to ask someone to do that?

 

[anonymous]

BArb, I know you are asking for a CF'ers opinion but I would suggest you ask a spouse instead. We really know. I think it is only normal for you to wonder that. I am sure Troy feels that way now. Was this fair, to have a family and have them count on him for support now that he is sick. It is alot of pressure. I will tell you, it is all worth it. I would not trade lives with anyone. My life is not pretty and many would not trade with me but it is all I know. Troys CF has made us appreciate every day. Every birthday, every stollen moment, every laugh. We appreciate things to their fullest. Many may say our parties are a bit over the top but I will never say that when I look at videos one day. I will probably wonder why I didnt do more. Everytime we have cake, we put candles in it and celebrate. The love that Troy has shown me is like none other I have ever seen.

So, I would say, leave it up to your boyfriend. Let him decide. Can he really walk away from love for fear of losing it one day? Doesnt that sound silly. Should he love you for years to come or stop today? Is that something he really has power over? Take the reality out of it. Could he be hit by a car tomorrow. Would you then wish you had said goodbye to him yesterday to take the sting out of it? No! I told Allie the other day that her life is better because Ry was in it, not worse because he is no longer. I kinda like that and will remember it one day when I need it most. I realize what my future may look like, but today, its all good! And thats all I care about.

Good luck

Karen

 

[julie]

Barb,

I'm a nonCFer speaking out here, I hope you don't mind.

It really depends on where your boyfriends comfort level is with the entire situation. Mark and I had many many discussions where he posed some of the same questions you did. I would assume that since you two have bene together for almost 4 years, you've had some honest discussions about CF and all of the long term possibilities-oh, silly me, I see you mentioned that. If even after all of that, he wants to stay, and he knows all the possibilities... then he really does want to be there-regardless of some future difficulities.

We had a few rough patches where Mark thought I would be better off without him and he didn't think it was fair that I invest so much time and yes, money into a relationship where he might get really sick and I have to care for him or he passes away early and I would have to be the sole provider and so on... The thing is, I WOULD RATHER SPEND WHATEVER TIME I CAN GET WITH HIM (BE IT 5 YEARS OR 25 YEARS) THAN TO "GO ON WITH MY LIFE", SEARCHING FOR THE LOVE AND CONNECTION THAT I HAVE WITH HIM AND NEVER FINDING IT AND NEVER BEING HAPPY. I hope that makes sense.

Does your current employer offer any type of disability plan, short or long term? How about a private insurance company (I recently started a thread about his, you may be able to benefit from it). You can recieve that disability money in addition to the SSDI. How about a savings account or a 401k? You can take out of a 401K for "emergencies" without being penalized, you just have to jump through a few hoops. Just a few things I can think of right now.

And to answer your question regarding is it right to ask someone to do that??? If the person's heart is truly in the relationship then it really doesn't matter-honestly. I am speaking from someone in your boyfriends shoes and I and I can tell you, YES mark and I do worry about finances-all of the time we worry (especially now with three babies on the way). BUT then we also look at his brother who has a wife, 3 kids and makes 400k a year and HE worries about finances too-maybe moreso than we do (he spends his money VERY VERY irresponsibly!!) You are right in your statement, love can conquer anything, it really can. The only issue is figuring out if the other persons heart is really in it. Are they doing it out of true and pure love (and even if they do it for that reason, they will still have worries and fret about things) or are they doing it out of obligation? That's somethin only the two of you can figure out.

Best of luck Barb!

 

[JazzysMom]

Quite honestly this is a hard one. Until you see the worst of CF a person doesnt really know what they are in for. I hate to be a downer, but its true. My husband & have been together 9 1/2 years and tho I had my problems thruout that time including hospital admits....it wasnt until my problems last year that it really registered with him. He finally realized that I cant always bounce back & that the chances of me dying before him & leaving him raising our daughter was reality & not just talk. I am fortunate to know he loves me with every inch of his being & tells me/shows me that constantly. Sadly there are some CFers whose spouses cant handle it & they get out of the relationship. I dont ridicule these people because it is hard at its best. This is definitely something that you need to use examples of people to get the point across. You dont know what the future holds like you said. You can be sick tomorrow & never bounce back or you can go on another 10 years doing find. Even tho CF is progressive we all know that each person varies with when it starts & how quickly it progresses. I sure sound negative dont I.....I dont mean to because even tho its rough, the love & bond between a CFer & their mate is quite unique & special!

 

[EnergyGal]

Hi Julie
I did a search on the disablity link and could not find it. Could you send me the link in this thread please.

Such good advice given.

 

[Faust]

I've been in a few long term relationships, this current one the longest, and probably/hopefully my last one. She used to cry at times, at night, when thinking about me and what will happen eventually. She would cry and say things like it's not fair and all that stuff. I told her, I don't look at it like that. Nothing is "fair" in life. Totally normal healthy men with 3 kids and married leave the house and get creamed by a cement truck. Is that fair? A young girl walks home from school in broad daylight and gets abducted, raped, and murdered...Was that fair? How about hurricane katrina doing what it did to many innocent people, was that fair? After a few crying sessions, she figured out that we shouldn't dwell on the negatives, and we should just be happy we have each other, and I will do everything in my power to remain here with her and in as best health as I can attain. Aside from some social drinking, I won't knowingly do anything to harm myself, so I can remain here with her.


We will be getting married soon and looking into a child after that, finances and fate willing. I think a good point should be made for if you think you offer this other person enough in whatever ways for them to not side on leaving when it comes to your health and the inevitable. Do you make them laugh often? Are you always real nice to them? Do you go out of your way to make them happy? Do you please them sexually and then some? Do you listen to them good? Do their general needs come first often? Are you generally an a*s to them or their family?


To me, people "sell" themselves to others. Just like a job interview, or impressing a potential mate on a first date. If you start to grossly lack in one area over a long period of time, those other people will start to lean more towards the negatives associated with your disease. Do it/neglect it even more so, and the option for leaving seems more and more desireable. Of course their character is also a factor. You know how so many women in long term relationships or marriage cheat on their mate? Well they do so due to neglect or if their mates are just abusive in any particular area. We all know what I think about men cheating, which is a different ball of wax in general. That old phrase "If you don't pet the kitty, the kitty will get pet somewhere else" isn't a direct sexual metaphor, it can be applied to any relationship in any area.


I've known several mates of CF's who have left, and i've known several mates of CF's who stuck around. It can be a big crap shoot, but there is relevance with regard to what the CF does or doesn't do.

 

[LisaV]

I knew my husband had a chronic progressive illness when I married him. I didn't know how quickly it would progress and I really had not anticipated the degree of disability he would have and for how long.

I have no regrets. He was the love of my life. Spiritually, it was right for us to marry. And because I was making a good income we were able to provide for him at home.

That said, he would have had more options if we had not married. He would have been eligible for Medicaid for example (which would have paid for transportation to and from appointments and for Personal Care Attendents). We would have been less concerned about protecting monies for my old age.

In sum, I think if you just "live together" (have a committment ceremony or whatever) then you can make sure you're not a financial burden on him if that's your concern. It's impossible to say how you will both feel if you ever become so ill/disabled that you need real handson caregiving.

Still, even tho' it was a completely impractical decision, I'm glad we went for broke and got married. Rip loved me completely and unconditionally. He supported me emotionally every day. (And that means during both my parents' and sister's deaths, and his illness, and my work craziness.) His joy of life and committment to living life every day (no matter how frail he was) was contagious. He was a wonderful role model No one can ever take that away from me--and it will give me strength for the rest of my life.

Only the 2 of you can decide.
But don't give up on him without giving him a chance I'd say.

 

[Allie]

Here's the thing, Barb. It's not your choice to make whether he can handle it or not, it's his.

If you've been very honest with him this whole time about what CF is and what it'll eventually do (kudos, by the way), then he knows. He doesn't care. He has chosen to love you over all that, come what may. Heck, Ry told me he was going to die when he proposed, and I still accepted lol.

Not to get all terribly mushy and stuff, but love is worth the while. I had only 7 years with Ry, which was way too short of a time, but I wouldn't trade those 7 years for anything.

I worked, I took care of the income when Ry got sick. You make do. All he can ask of you is to do what you can while you can. I'm sure he won't ask more of you.

Don't cheat him out of an opportunity to love you because of what the future will bring. All you can do is cling to each other. I would have been so angry if Ry had decided not to marry me because of his CF. He was my world, and my everything, and to be cheated out of a chance to have known that, to have known true love, that's terribly unfair.

If there's anything else I can help you with, don't hesitate to ask <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

I've questioned this before many times myself. I asked Mike about it on several occasions. He always gave me the same 4 answers, one after the next.
1). I'd rather have some time with you, than none at all.
2). I'm a big boy, I can make my own decisions.
3). I love you.
4). Shut up.

As long as you're honest with him, and I mean VERY honest (and it sounds like you are), he can make the decision for himself. If he chooses to stay, I say respect his choice.

 

[NoExcuses]

.

 

[julie]

Risa,

Here's the link <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7154&enterthread=y">http://forums.cysticfibrosis.c...did=7154&enterthread=y</a> I just got a few responses. This subject has been discussed in the past so tried to find some threads on the search feature but I couldn't (I also didn't dedicate too much time to searching before I posted).

Hopefully this will help you a bit.

 

[wallflower]

Thanks for the replies. I guess in my situation, it's not so much that I'm pushing him away, but that he is not sure himself. He wants to be with me, but he is afraid of the future. Knowing that he has so many fears, it is hard for me know if I should persist, or let him go. I hate the thought that I would be another source of stress for him (which in turn stresses me out).

Please don't bash him - he is a truly amazing guy. While I would be heartbroken if we parted ways, I wouldn't think any less of him if he is unable to handle this.

 

[miesl]

Another thing that might be helpful... have him come here and chat with everyone.

We promise we won't tell him any juicy stories about you!

 

[thelizardqueen]

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


but is it really right to ask someone to do that?</end quote></div>

Is it right to ASK your partner to stay with you, even knowing that the outcome is that you may die sooner then later? I don't think its a matter of you asking him to be with you, but rather it is HIS CHOICE to make. I often thought about this myself - how fair is it for me to put my bf through all of this, and then lose me sooner then later? He and I talked about it, and he told me that its his choice to make. I'm not forcing him to do anything he doesn't want to do. If he doesn't want to stick and around and see you die young, then he doesn't have to. The fact that he is with you long term says that he wants to be with you, no matter what. And I do hate to bring this point up, but he could easily die before you - hit by a bus, car accident, cancer, etc. NOthing in life is a certainty. But at the very least, it is his decision to make, you're not asking him to do anything he isn't willing and wanting to do.

 

[julie]

Completely understandable Barb. It's good that you two are able to talk about this and work it out, some don't have that luxury and the end result is just someone walking out.

This sounds like a really tough spot for him and for you. The bottom line Mark and I decided is that money and financial security isn't everything. Sure it's nice, but we could go our separate ways and something could happen to him and he could have nobody. Or I could part ways and something could happen to me and I would have nobody. It's really a hard situation. If he's having dobuts, let him talk it out (it sounds like he is) and figure it out.

Some people just aren't cut out to handle stuff like this, that's the bottom line and no judgement to them for it. To each his own. but it's definately something to work out.

I really wish you two the best!

 

[tiregrl19]

I have, until recently, been struggling with this. I would push my
ex boyfriends away once I thought I liked them a little to much to
avoid the stress of thinking about this. Then I found the guy I am
currently involved with and I knew there was no pushing him away. I
have had this conversation with him many times and he always tells
me that he can die tomorrow and that if it was an issue with him
then I would no about it long before now. So in a summary- what
everyone else is saying. He loves you because you are you--- your
CF made you the person you are, therefore he loves your CF too. If
it makes you feel better ask your doctor realistically how long he
thinks you have and what your chances of getting a lung transplant
are. Information is definately power!!! I hope your heart is inline
with your head soon. I hated being in that stage that you are at--

 

[anonymous]

A partner saying they are afraid is OK, I think.
To not say it would be lying, IMHO.
Anyone would be afraid.

But that's not the same thing as saying he wants out.

If he talks about it alot though, you need to hear that as information. It might not be wise for you to put yourself in a position where you are completely dependent on him (like married). Because if he does leave if you get sick after you're married it takes a lot longer to set yourself up as an indpendent person (get disability payments, medicaid, etc) and typically you won't be eligible until after a divorce becomes final which can take more than a year (and there would be an awful limbo).

You need to take care of yourself, first. As much as you say you love him, only you are right there and can judge whether or not it feels safe to you to put yourself in his care - whether it is just your heart or whether it is your financial and medical security.

My husband's greatest fear was that I would cut and run like his second wife. It took a lot for him to trust that I would do right by him if he got really sick. I feel honored that he did trust me - and think I honored that trust appropriately.

It's scarey for everyone.
I'm sure you will make the best choice for yourself.
I'll be thinking of you,
LisaV