Giving up, when do you know?

[strateup]

I haven't commented on this site for quite some time.  i have now been on dialysis for thirteen plus years. I started with a transplant in 1995 and been through it all every since.  Yes there are lots of wonderful positive stories people have to tell about life on dialysis.  I could even sell about anyone how i have managed to carve out a fulfilling life dealing with this disease.  The reality of it all haunts me more and more everyday.  I am chained to a piece of machinery, i feel as though i have been imprisoned for the last thirteen years.  I have gotten to watch my children grow up and become young adults and for that and the technology I am thankful.  I have a loving and supportive wife who is my care partner who is still a young beautiful 42 year woman.  I recently got onto face book and saw an old girlfriend that i believed i would have spent my life with.  I read in her profile all of the things she has done and places she has went and how wonderful her life is.  I look back on my life and think how could I have put such limitations on my wife.  I think she could of had so much more if she had not been with me.  like I said she is a young 42 and there is so much more out there for her.  I feel that at this point she could have such a more rewarding and fulfilling life if I were gone.  I started Nx Stage a few months ago and expected that i would have much more energy and stamina.  I see little to no improvement at all.  My kids are pretty self sufficient they really don't need me.  Can anyone relate with me on how I am feeling?  I am just thinking about giving up.

[Jean]

That is a very moving story Strate Up. However, since I am a wife, and since I was a caregiver, I think you should discuss this with your wife before you go any further. I am all but positive, she will be upset with you. If she wanted to do all those glorious and wonderful things, she would have done so. I would bet she is happiest being with you. Give it a try.

[bevvy5]

Yours is the first IHD post that has brought me to tears.  I can't know how you feel but I hope you will read my post.  It's the hardest thing I have ever written

My husband is the one with the bum kidneys.  We have been married for almost 33 years.  Two kids, self sufficient, two grandkids.  I almost lost him two months ago due to complications of this loathsome disease. 

I love him.  I rarely allow myself to think of life without him but in those middle of the nights, it's terrifying 

Yeah, he talks about retiling the kitchen.  He talks about renovating our vacation home - which I know we may have to sell but I can't even bear to express that to him.  Do I care about any of that?  Not a wit.  We loved to travel, now we can't - although we're hoping.  Do I care?  Maybe a bit but we take shorter trips - together - and that's good. 

He is the father of my children.  He knows my fears and my weaknesses.  He puts up with all those little things that I know drive him crazy.  When he was sick in hospital, I did "personal care" that I would never have believed I would do, and I was happy that I could at least make him a little more comfortable when we honestly didn't know if he would live or die.  But I love him and I just cannot even fathom not having him here.

So don't you dare give up.  She needs you.  Your children need you.  We don't want anybody else or another life.  And if you ask her, she will tell you.

[glitter]

As a woman and the former care giver of my husband, I do have a dif. perspective My husband died last year.....he was 51- I was 40. You have a loving and supportive wife who probably loves you with every fiber of her being, she will NEVER get over losing you. You may think she will be better off- but there are no guarentees in this short life we have- and she loves you. Imagine the giant hole that would be left in YOUR heart if she were to die....now think of the giant hole that would rip through HER soul if you were to die. She would spend the rest of her life missing you every day.....every single day. Finding  someone who loves you is truely what life is about- she probably would not trade one other 'thing' with the happy family she has. All those things do not matter if you have no one to share your life with. I search people faces- looking for a glimpse of my husband here on earth and I will never find it. I will never get over losing my husband- my kids will never get over losing Dad. Your kids still need the stability of knowing your here..and your grandkids need to know you. There are some things no one can teach but YOU. I could go on all night about how greif sucks, but right now you are ALIVE. I do know that it must be hard, I am not a dialysis patient myself, but I do know what it feels like to be the one left behind.

[Sunny]

Your wife is still there and she must love you very much.
I have often felt guilty about what I must be putting my husband through these 9 years I've been dealing with kidney disease. Not to mention what it must have been like for my children who were 9 and 11 when I first got sick. Now that my children are 19 and 20, I see it has made them stronger and more empathetic of others. As for my husband, I make sure he gets to go have plenty of fun doing the things he likes to do without me. I'll bet many of us have thought about how hard our disease is on our spouses. Who knows what fun stuff is just around the corner. I'd say don't give up. Maybe reassess things to see what can be changed a little to make things better.

[YLGuy]

Steve,
Please listen to what bevvy wrote.  Talk to your wife or even consider clergy or someone professional.  I bet you still have some of that "still kickin a@@" spirit left. 

[MooseMom]

I think it is possible that you are operating under too many assumptions, most of them probably untrue.

You assume that your ex-girlfriend has this wonderful life.  People lie on Facebook.  She's not going to write that she is fat and miserable.  She can post any old crap.  She may indeed have gone to Timbuktu, but she wouldn't tell the world about the dysentery she got while there.

You assume that just because your kids are self sufficient that they don't need you anymore.  I remember that while I was in college, my parents disappeared from my life because I, like everyone else that age, became totally self absorbed.  This didn't change until I married and had a baby.  I don't know if your kids plan to start families of their own, but if they have their own punkins, that makes you a grandad, and I assure you that grandparents are a godsend.

Lastly, you assume that your wife would rather not be burdened by you.  I don't think it is fair that you are doing her thinking for her.  The full extent of my illness became apparent less than a year after my husband and I married; we had just one year of joy together and five of years of terror.  I am about to start dialysis and am trying to get on the transplant list.

[MooseMom]

part 2...  I feel incredibly guilty that I have burdened him with all of this.  He didn't know his potassium from his phosphorus before he married me.  Unfortunately, now he does.  But I wouldn't dare assume that I knew exactly what was in his heart or that he would rather be with someone else.  I understand how you are feeling; most of us probably have felt like you do at some time. But we need to remind ourselves that everyone has some cross to bear.  Ours is kidney failure. Would you abandon your wife or love her less if she was stricken with breast cancer?  Probably not.

I think that the least you can do is to speak to your wife about how you are feeling.  Give her the opportunity to defend herself before you unilaterally make a decision.  I can truly understand the desire to give up.  I'm not even on D yet, but I have felt like giving up.  I have had this disease for almost 20 years, and all the pills and diets have not immunized me against kidney failure.  I can't imagine it all getting harder, but it will get a LOT harder.

I don't mean to sound trite, but the reality is that technology is moving at lightning speed.  Companies like NxStage are working all the time to come up with newer and more portable machines.  The fact that America is fat and diabetic works in our favour because there is going to be an enormous demand for new modalities and technologies for renal replacement therapy.  Now really is not the time to give up.  Could you perhaps consider staying with NxStage and not making any major decisions until, say, the end of the year?  Can you give yourself a little more time?

[Rerun]

Women are very different then men.  I am the one with kidney failure (woman).  We were married for 2.5 years when I had kidney failure.  All our dreams were crushed.  I could tell my husband resented me for getting sick.  Even though I got a transplant after only 9 months of dialysis then I got fat from the prednisone.  He hated me for that too.  I felt like you.  If my transplant ever failed I would not go back on dialysis and just release him to finally fulfill his dreams.  After 10 years and me working full-time to support his financial dreams he dumped me for another woman.  We divorced and I pursued my careear.  My kidney finally failed 7 years later.  So it lasted 17 years.  This woman he married.  She had 4 boys.  After another 10 years he has no more fulfilled his dreams than if we had stayed together.  Well, maybe he is happier but they don't travel or do anything different.  Oh, and his father is now on dialysis so he has to deal with that.  God Forbid!   

So, I guess what I'm saying.... You wife would probably stay with you even if you were paralyzed from the neck down.  If she hasn't left you yet for her dreams, she wouldn't do anything different if you were gone except curl up in a corner and die.

If you are not having major problems, just hang in there for the ride.  Learn to pack up your Nxstage and go somewhere.  I do know how you feel.  I know where I'm going and it is a much better place.  But, I keep going to dialysis. 

[Sluff]

You obviously love your wife with everything you have. We have bouts of stinkin thinkin, occasionally but thats all it is Srateup. This is the life that you and your wife have been dealt with and you both are dealing with it the best you know how. Be happy she loves you back. You need to just go to her and tell her how you feel and tell her that urge can be very strong at times, but tell her how special she is and how lucky you are to have her and thank her for her loyalty during the tough times. 

[Stacy Without An E]

You may not feel like it right now, but from my perspective, you're a very lucky guy.

I have been on Dialysis six years now, and would give anything to have a loving wife, beautiful children, and a family of my own.

I've been alone through this entire process with no one to count on.  Friends have evaporated and I don't feel I can talk to my family, because all they want to hear is positive news, which I can't really provide.  So I don't share anything.

Its easy to dwell on what we don't have because of the evil process of Dialysis.  Appreciating what we do have, that's the difficult part.

Take care.

[monrein]

I haven't commented on this site for quite some time.  i have now been on dialysis for thirteen plus years. I started with a transplant in 1995 and been through it all every since.  Yes there are lots of wonderful positive stories people have to tell about life on dialysis.  I could even sell about anyone how i have managed to carve out a fulfilling life dealing with this disease.  The reality of it all haunts me more and more everyday.  I am chained to a piece of machinery, i feel as though i have been imprisoned for the last thirteen years.  I have gotten to watch my children grow up and become young adults and for that and the technology I am thankful.  I have a loving and supportive wife who is my care partner who is still a young beautiful 42 year woman.  I recently got onto face book and saw an old girlfriend that i believed i would have spent my life with.  I read in her profile all of the things she has done and places she has went and how wonderful her life is.  I look back on my life and think how could I have put such limitations on my wife.  I think she could of had so much more if she had not been with me.  like I said she is a young 42 and there is so much more out there for her.  I feel that at this point she could have such a more rewarding and fulfilling life if I were gone.  I started Nx Stage a few months ago and expected that i would have much more energy and stamina.  I see little to no improvement at all.  My kids are pretty self sufficient they really don't need me.  Can anyone relate with me on how I am feeling?  I am just thinking about giving up.

Dear Strateup
You have written a very haunting and touching post because it so accurately expresses the  truth of what many of us feel and think, perhaps not all the time but most certainly at times.
I was 26 when I started on D and many of the dreams my husband and I had were exchanged for different ones, not by choice but by necessity.  We never had children, as a result of ESRD, our lives of travel changed as a result of ESRD, my career path took a very different route as a result of ESRD, our marriage was sorely tested as a result of ESRD and so on and so on.  However, without children we took advantage of the freedom that afforded to pursue some other things that parenthood would most certainly have curtailed, we both went back to school and my husband graduated from law school at 40, which our other plans would have precluded, we took up new recreational pastimes because we couldn't travel to wild exotic places which we loved doing.  I sometimes think that we are like rivers, the water has to flow, even if it means cutting a new channel because the usual one has become blocked. 
I cannot pretend that this course has been easy.  It hasn't and it isn't.  13 years is a very long time on D and you're tired, I really understand that because although the longest I was on was 5 years, I was frequently tired and overwhelmed too.  I was willing to let my husband go and seek out someone to have children with and live a more normal life.  I hope that he considered it carefully, I think he did, and he's still here.  I'll be honest...he may be a better person than I am and I don't know if I would have made the same decision.  Your wife could leave you...it's not uncommon, as some here have already said, she might feel guilty but she could learn to live with it and leaving is a legitimate choice (no matter how angry or judgmental others might be).  But, so far she's still there and that's a legitimate choice also.  You say that you wonder how you could have placed such restrictions on her and her life but you've forgotten that YOU DID NO SUCH THING.  Kidney disease did it, not you. 

Now, I want to ask you a question, about depression.  I don't mean feeling blue like everyone does at times or feeling awful after an upsetting loss which is normal, but real, clinical depression when nothing feels worthwhile, when all you want to do is sleep or be listlessly awake for hours on end.  This is very common for us who must live with kidney disease and there is help available that is worth looking into.  Would you ever consider asking to speak to a social worker and see about getting assessed for this.  When we feel really wretched, we truly lose sight of the forest for the trees and even the beauty of the tree in front of us becomes dim. 
Please also consider talking honestly to your wife about how you're feeling.  Way back, when my husband was struggling with feeling very trapped he couldn't say a word about it and yet I knew and thought I understood his feelings more than he did.   Often, the things we imagine are way worse than the reality. 
There's no point thinking about other people's lives and how wonderful they are because no one but no one really knows the interior workings of those.  Situations that look perfect most often are far from being so and situations and relationships that may be unappealing to some can bring deep satisfaction and contentment to the participants.  Life really isn't a spectator sport.  Far more important is to look at your circumstances with your own wife and try to make some room for activities that, while maybe not your or her first choice, would still keep you connected to each other and take you out of yourself and the restrictive routines imposed by kidney disease. 
I wish you well, and please know that you can come here any time and dump your feelings.  Get them out and sometimes that can provide a bit of relief, if even temporarily, so you and your wife can then enjoy an evening at the movies or whatever.

[okarol]

The responses on this thread are amazing.

Other people's lives may look fun-filled and care free, but that's often not the case. Every household has issues, some are more hidden that others. My husband has been disabled from a skiing injury to his back, and after multiple surgeries he is still in pain. It's been 12 years and family and friends still ask, "Is he getting better?" It even took me a long time to accept the limitations it put on our lives. Would he have chosen this path for us? No way. He has done the best he can. I know he probably feels like you do, that there's so much more he wishes he could do for us. Teaching our 2 younger kids to do things like ride bikes or help them build a treehouse, or many other physical activities. He just couldn't do it like he did with the older 2. Family travel has been without him, and very limited. He hasn't even been able to work, which I think is the biggest blow. But through all this we still all count on him to be there, to be the dad. Maybe not like anyone elses, but as best as he can be.
Best wishes to you. I hope you can hang in there.

[galvo]

strateup, I understand where you're at. Been there, and still go there occasionaly. You've prompted some excellent replies, and I can't add to them. One day at a time, mate, one day at a time.

[sullidog]

I just wanna say dido to everything said here, and yes one day at a time, that's all you can do, especially me since I don't know what's going to happen from one day to the next, how I'm gonna feel, etc.
Troy

[strateup]

Thanks all for your kind words of support.  Several of your posts brought tears to my eyes.  I don't think that i am depressed and I don't consider myself suicidal.  I guess maybe I have just been looking at things the wrong way.  My wife is off on a week long trip with her girlfriends.  When I talk to her each evening I can hear a sparkle in her voice that I recognize from years ago.  We have been together for 22 years, as you all know this disease slowly pulls at you, both spiritually and physically.  At 47 years old I feel like an old man, not the man that who used to be able to move the heaven and earth for my wife.  It is all still in my heart but the energy and stamina are simply no longer there. It just seems that if I really loved her I would let her go, all of my best years are gone.   When she returns home I will have a heart to heart with her.  Thanks again for sharing your stories with me.  May God Bless You All

[Phraxis]

First I hope the conversation with your wife went well -- I anticipate that it did. Well maybe after she gave you a stiff peace of her mind for thinking so "selfishly" that she would be happier without you. (I trust that statement is meant to reflect the positiveness that I sense in your relationship, and that expressed in so many of the other postings.

But I am going to also offer a different perspective, of course you feel that way. I think all of us do at some point, and in some cases plenty of times. But I will offer advice that I gave a young girl that was had CP that restricted her control of her rght side -- "of course you feel like people doing allot for you, and sometimes that may make you feel like they would be better off if you weren't around, but that is because you have lost sight of your responsibility to match their kindness with your own efforts. And there will be times that the effort just to survive will be all you can muster but always remember that we love you and that is all we ask is that you keep fighting, and let me worry about how much you have just pissed me off."

That young girl is now a woman of twenty and has graduated high school , and is taking college courses. When she heard about my kidney failure last year , she sent me an email exhorting me to keep fighting and offering kidney.

When you are sick it is easy to lose sight from time to time of our value to others, and even need to question your own value but you are responsible to pull yourself out of that place and return to your loved ones.  and in your case it sounds like you may have Grandkids someday that will need to meet you.

Keep fighting and safe journey

[cdwbrooklyn]

Strateup, by your picture, you are not a bad looking guy.  I do not believe your good years are over.  However, I do believe you are giving up too quickly.  You are still young although you feel old.   I've been on D for over 11 years and recently I started feeling like you.  Most of my good friends are married with more children (we all were single parents with one child) and I'm still single with one child who is grown now   I had a breakdown because I never thought I would be the one sitting out looking in wishing I was married with more children.  However, I wanted to kill myself but thinking about all the people I would disappoint, I decided it was not the best thing to do.  However, I was still hurting inside because it seems like everyone arrived and I didn't.  I started to feel it was some curse I was under and why live.  Nevertheless, I realized that I was comparing myself to others and not appreciating the things God blessed me with.  I started to think about all the things I have and all the people that love me and all the things I did not get to do yet and decided that killing myself is not the answer.  I've learned that I am not waking up every morning to be on dialysis.  I am on dialysis so I can wake up everyone and LIVE MY LIFE.  Now with that in mind, I starting to realize that being on dialysis is not that bad after all.  I made it 11 years going on 12 years and pray that I will live 40 - 50 more years if its God's will.   

[RightSide]

You may not feel like it right now, but from my perspective, you're a very lucky guy.

I have been on Dialysis six years now, and would give anything to have a loving wife, beautiful children, and a family of my own.

That's my situation too.
And I feel for you, as I do for Strateup.

I wish I knew what advice to give to Strateup--but I don't even know what it feels like to care so much about someone else that you don't want to be a burden on that person.  Because in my case as in yours, there is no such person in our immediate lives.

At this moment, I'm sitting in my apartment all by myself typing this.  I have no wife, no fiance, no girlfriend.  There is no such person whom I would be leaving behind, if I were to depart this earth tomorrow.  I envy Strateup for having a wife who cares so deeply about him.

Yet I'm not giving up.

[supporter]

Strateup, I hope I can help you out a little from the other side of your fence.  I am a 49 year old healthy man (as far as I know, at least) whose wife is just beginning dialysis after having been diagnosed with kidney disease a long time ago.  Our travel options are limited and there will be a lot of sacrifices ahead, but I can safely say that I really don't care, as long as I can spend time with her, and have that to look forward to.  My point is that I think that what we do in life doesn't really matter, and doesn't impact our happiness in the end.  What does matter, and what does ultimately impact our happiness is our ability to be fulfilled by what IS available to us in our daily lives.  What is fulfilling to me personally is to be able to talk to and share things like movies, books and art with my wife.  Other things are just filler or fluff - details to me that are arbitrary.  I believe the same things must be true for your wife.  No one held a gun to her head all this time.  She could have left if she really wanted to, but didn't.  Obligation or pity are insufficient motives to stay with someone, so I am sure your wife is fulfilled by having you in her life, not by her ability to travel or do physically demanding things with you.

Stacy and Rightside, try to hang in there, guys.  I know that's easy for me to say, and I don't know either of you in the least, but I do empathize with you, and care what happens to you; and I really do hope that you continue to be able to enjoy your lives, and to find fulfillment and pleasure out of life.  There is so much in life to learn about and to get pleasure from, depending on what interests you.

[supporter]

(Part 2)  Speaking of interesting and fulfilling things, I cam across a company called The Teaching Company, which offers college courses on DVD in every possible area of interest from classical music to literature to art to cosmology, history and everything else imaginable.  It can be found at www.TEACH12.com  or 1-800-832-2412.  My wife and I have purchased a few of these courses, and they really are very interesting and worthwhile.  They are something that I think can be extremely fulfilling and helpful for anyone in general, but especially for anyone with any physical limitations.

[kitkatz]

I know that my hubby and I lean on each other for support through the thick and thin of it.  Of course we have had to make drastic lifestyle changes over the past twenty four years since we married but through it all...kids, ESRD, dialysis,  injury and amputation (on his left leg). We have learned to value each other as a person.  Sure we are not the consumate vacationers, but we do get around a little bit as we can.  Our dreams involved getting along within this world. If we can help each other do it, then the world has been made a better place.



All the support I can give you are in these hugs...

[RichardMEL]

Gee mate this is a tough one.

I think there have been some wonderful replies already so I won't rehash what others have said.

About your wife... the thing to remember is that it takes two to tango right? You're worried about the burden you have put on her and what she might have missed out on, but the flip side of that is that if she was not with you, and leading the supposedly amazing life of the old gf on facebook... she'd be doing it without YOU !!!! She's married and stuck with you all these years not because she wanted a big screen TV, or holidays in Hawaii or any of that stuff. She fell in love with someone so terribly dear to her that nothing could stop her staying with her man - that's you!! Sure as hell not 13 years of bloody dialysis!! You need to remember that when you worry about what her life could have been.

I personally feel looking back and saying "what if?" just makes things worse. I mean what if I'd taken swimming seriously as a kid? flipside.. I may have drowned in a pool accident. What if I didn't have kidney disease, how amazing would life be?! Yep, totally amazing... but totally DIFFERENT.... Maybe better, maybe worse. Who's to say. The thing is you can't change it. I prefer to look forward, rather than back - the future is something I have a bit of a choice over as in how *I* approach it, and how I respond to what goes on. I think the same goes for you too, and everyoine else in our situation.

Like Stacy said you have a lot in your life that many people dream of - a loving wife, family doing well, etc. Me? I live alone with a cat (yes, I am going to become the crazy old cat man yelling at people from my window!). Could things be better for you? Absolutely.... but you've got what you've been dealt with. I say make the most of it...

Oh and one other thing.. You wrote that your wife is off for a girl's week away - that's fantastic!! This is HEALTHY for her. She is doing what she needs to do to de stress a bit, and have some her time - sounds like maybe she needed it. That is NOT to say she needed it because caring for you is a burden and she'd be better off without that - NO! NO! NO! Don't even go there!! What I mean is that we all need a vacation from the every day to recharge. I just had a mini one today where I flew interstate for the day. I didn't have any particular reason.. just wanted a change of scenery. I should be dog tired(been awake something like 18 hiours) but I feel pretty darn good.

I think you'll find your wife is doing just fine, and perish the thought if you DID give up - wouldn't that totally devistate her and your kids and extended family and friends? You may not realise this but she probably needs you more than you think. Love's a funny thing my friend.... work with it - not against it.
I bet some of that sparkle in her voice is because she misses being away from you....

Hang in there mate, an if you do feel it is all overwhealming to you then absolutely I suggest seeeking professional help - talk to your neph or social worker about a referral to someone who can help.

[MooseMom]

My wife is off on a week long trip with her girlfriends.  When I talk to her each evening I can hear a sparkle in her voice that I recognize from years ago.  We have been together for 22 years, as you all know this disease slowly pulls at you, both spiritually and physically.

If I had the opportunity to go away for a week with my girlfriends, you'd hear a sparkle in my voice, too!  Most wives have most, if not all, of the domestic duties.  I'd love a week away from the cookingcleaningshoppingscrubbingsweepinggardeninglaundryhaulingrecyclinghooveringdishwashingdustingetc.  I work hard and don't get pay, accolades or holiday.  Yes, ESRD slowly pulls at you, but so does domestic drudgery.  I suspect that it's the latter she wants a break from. 
 

[MooseMom]

  At 47 years old I feel like an old man, not the man that who used to be able to move the heaven and earth for my wife.  It is all still in my heart but the energy and stamina are simply no longer there. It just seems that if I really loved her I would let her go, all of my best years are gone.   When she returns home I will have a heart to heart with her.

It is hard to give practical advice to people you don't know, so if I post something that is largely irrelevant, my apologies.  I've been thinking about this discussion all day, and one thing occurs to me.  Just because you are on dialysis doesn't mean that you cannot be a caregiver.  There are many ways to care for someone.  Your wife has taken care of your dialysis needs, and you can look after her emotional needs.  Is there anyone else who can train with you on NxStage?  Find someone who would be willing to train with you so that your wife can take more breaks if she needs to.  The fact that she seems to be enjoying her week away tells me that it might be an idea to see if you can make that happen more often.  Perhaps you can talk to the social worker at your clinic; you could ask him/her to help you help your wife.  Be pro-active.  Make a plan for giving her more opportunities for time away.  Could one of your kids help?  Could one of them train on NxStage so that your wife could take the occasional break?