Relationships and dialysis.

[kitkatz]

I remember writing the above post in March and then the roles reversed and I had to take care of Victor when he has his accident in May 2006.  It was a role reversal extreme. Now I have to carry in the groceries from the car and remember to get the trash out on Wednesday mornings. I had to do the running around to hospitals rooms and to rehab to see him.I was by myself for three weeks and had to learn new coping skills real fast. And after he came home I had to take care of him with antibiotics and be sur ehe had what he needed. 

Thank God we are over a year out from all of this heartache and stress.  Now we are back to taking care of ech other. He drives me to dialysis and picks me up. I am getting spoiled.  (He just wants the car to run his errands.) 

[Ken Shelmerdine]

I just don't know what I'd do without my wife Rita. She's my rock. We've been married 33 years and in that time  we've had some great times together and also a tragic loss of our only child Donna Louise in 1980 from Cystic Fibrosis at 4 years old. Although we can never reconcile it we got through it and stuck together. Rita also has her Mum to worry about. She's 84 years old and has vascular dementia. It has turned her mother very mean and aggressive and most of the time she gives Rita hell.

[RichardMEL]

I don't know why but I didn't see this thread till now!

Certainly dealing with dialysis adds a whole other dimension to the usual relationship issues we all face.

One thing that really disappointed me some years ago was with a young lady I had been seeing for about 2 years. This woman has a sister who has had *2* kidney transplants (!) and had been doing dialysis etc.. yet when I was told at the time dialysis was right around the corner for me, and I was struggling a bit.. I got absolutely NO support from this person.. and this is someone who SHOULD have had some idea what that meant for me given her own sister's experience.. but no I felt like she had no empathy(or attempt) at what I was facing and moreso didn't seem to really want to give me support. Of course there was another major issue that got in the way of our relationship and lead to us splitting up (basically she wanted to settle down and have kids, and I don't want to have kids...so I pretty much let her go to find someone who COULD give her what she wanted) but certainly the perceived lack of support was a big factor... I didn't feel much like fighting for someone who I felt wouldn't be there to support me when I *did* eventually start dialysis (which was 2 years later, as it happens). That woman is now married and well.. I wish her luck. I hear from her from time to time which is nice.

Since starting dialysis other things have been problematic. My last girlfriend had no real issue(I think) with dialysis, though she never visited me at the unit or came to see what it was all about.. but it was more a physical issue with what I could or couldn't do due to low energy levels (you all know what I'm getting at )... she was pretty understanding but MY issue was that I felt inadequate because I know I could do so much more if I was healthy you know? So I was feeling like I was letting her down because of my condition. As it happens she left the country to teach English for a year or more in China, so that's not an issue anymore! lol

The other issue, and I have discussed this with a couple of people on dialysis that are of a similar age, is telling a new interest just what the deal is and how they take it. How much do you reveal and when?? Given the fear that someone you're interested in may run off screaming if you lay it all out for them right away... and do you need togo on and on with someone you've just met.. and so on and so forth. One of my dialysis friends has this EXACT issue right now and we were talking about it the other day - she's met someone a month or so ago.. they've been on a few dates and spent time together. He knows she has dialysis but perhaps not the extent of all her medical issues and what it means etc...and she's not sure how to approach the situation given she is keen and he seems keen and she doesn't want him to be overwhealmed with it all and disappear.  The other side of that coin is, of course, if they run off because of something like that are they really someone you want to be in a relationship anyway?? So I guess it's one way to test someone's character?!!

Personally I always try to be as upfront and honest as possible... I mean I'm not going to meet a girl someplace and say "hey nice to meet you.. now just so you know I've got kidney failure...." but by the same token I'm not going to hide it either.

It's a delicate road.

[MyssAnne]

So far I have been lucky. I found my fiancee before I started dialysis, he was with me when my neph told me it was time. He's been there for me. All I can hope is that he'll be there for me when I have my transplant (whever that will be!). When I started dating, I knew I had a kdney problem, and that was a problem for me. How was I gonna tell prospectives about this? Some were scared, some were disgusted (!?), and some were okay with it as long as it didn't affect them.

[st789]

Thanks for sharing Richard.  In some ways, I understand your perspectives on this topic.  I am a young 30's myself.  After reading several heart break stories in this site about relationship and dialysis, I made a decision to be very very careful about my potential partner because of so many issues to deal with.  I have my tx. already but still very very caution about approaching the lady.  I mean I enjoy checking and appreciating their beauties and all.

I do not understand why a lady would not be more understanding given her sister had 2 kidney tx.  This is why I am so envy of some members here with supports and caring partners.

I would also go with honest policy is the way to go.

[KICKSTART]

I too can add myself to this list !  My hubby walked out on me just as i started dialysis and ive never seen him since (over 2 yrs ago now) . I have also tried the 'up front' approach .. in fact i started a thread (I'm not a leper) because of these issues. People i tell either become distant or stop chatting altogether. So when do you say something ? Seems this illness gets us in every way , both medically and socially.

[thegrammalady]

this statistic is about children with disabilities but since i'm alone i've wondered what the stats are regarding marriages/relationships where one of the partners is ill.

over 90% of all marriages with a disabled child ends in divorce.

i'll talk to anyone at anytime about kidney disease, wheather they want to hear it or not, "bad" habit from having a severely disabled child. if i run across a guy sometime that doesn't want to dump me because of it, well we'll just see if and when that ever happens.

[poohkari]

I'm just shocked and, honestly, horrified that so many of you have had such horrendous times with relationships. I can't fathom being married to someone and then just walking out when times get hard!

As the girlfriend to the patient, sure it's hard. It sucks. I'm mad a lot of the time - partly because I know things will never be the same and I don't feel we enjoyed them enough before Wade got sick. Even though I was given several "outs" when this all started, I never once thought about leaving Wade. I just wouldn't do that. I don't think that's rare - I would think that would be the normal reaction to anyone who has a relationship with someone on dialysis, or with health problems. Who knows? Maybe i'm just special! 

[st789]

I think u r very special poohkari, to stand strong by ur man in hell or heaven.  Would I ever have the fortune to meet a lady with strong character like u?

[angela515]

The father of my kids stuck by my side through my transplant failing and me starting dialysis. We broke up for other reasons, and I actually am the one who finally gave up completely and didn't want to try anymore due to not seeing any changes in him. My concern is now I am single.. I already have "baggage", 2 children, I also feel it's important for me to let anyone who I may date know that I do have medical problems, and even though I have a perfect working transplant now, it may not be that way forever (knock on wood) and dialysis is something that might be a part of my life again. I don't like to keep secrets and bring someone into my life blindsided I want them to know what could happen so they know what their getting into.

I don't know if I'll be alone forever or not... only time will tell... I am happy with it just being myself and my children but I have dreamed of having a "family" of my own since I was little... so having someone to spend the rest of my life with would be ideal for me, and I want my children to have a male role model in their life on a daily basis. 

[RichardMEL]

I think what a number of these situations shows us is more about the person who walks out or can't handle it because they don't have the strength or emotional maturity or whatever to handle it... Someone up above said something that stuck out at me... hold on....

The lovely MyssaAnne said...

I knew I had a kdney problem, and that was a problem for me. How was I gonna tell prospectives about this? Some were scared, some were disgusted (!?), and some were okay with it as long as it didn't affect them.

That last line really gets me. Not that MA wrote it... but the selfishness of the "it's ok as long as it doesn't affect them" part.... but then again when I think about it, I too am guilty of the same sort of thing when I think about being involved with someone with a child/children.. Because in some ways I wouldn't really want that as well (selfiish) but in others with the right person I could see it...

I am really angry with KS's hubby for walking out on her right when she needed him the most. What part of the vows about "in sickness and in health" did he miss?? that's horrible.

Unfortunately dealing with someone's medical issues on top of the other "normal" stuff can often be a deal breaker, specially for people just looking for a "fun" and "no stress" relationship... supporting and being understanding of someone with medical issues is often too much "work" and "stress" for some of these people and it's very sad but unfortunately we are the ones who usually lose out.

I am very happy for all of the people here who support and are supported by wonderful partners..... that is good to read

[MyssAnne]

Richard, you are so right, so many people really do want just fun and games, no baggage, of any kind, children, parents, or illnesses. Which is sad. I have come to value my friends and family who have stuck with me, and have supported me. Then I found this site, and found people who KNOW what it's like. It's hard, even for those who WANT to understand, just what it is we go through. To me, all of you are so special, so strong, so determined. I'm honored to have gotten the chance to know you. Thank YOU for your example of strength.

[RichardMEL]

To be fair though.. it's easier for us to relate because we KNOW.... If you asked me about dialysis the day before I was diagnosed I would have said something like "yeah, I saw something about it in Star Trek IV" and know absolutely nothing about it, and likely I wouldn't have given it much thought.

I think it's normal for people in general out there in "society" who are not directly exposed to serious medical conditions like kidney failure, cancer, HIV, whatever.... well it's sort of like "out of sight out of mind" and not their concern.

And you can understand ignorance from those people. Some are curious... some are fearful(!) and others just don't want to know... those are all fairly normal sorts of reactions too I think.

The thing that annoys me, as I said above, is people who ARE touched by such things - via a family member or close friend or whatever who DON'T show interest/empathy/some level of understanding.... Like in the thread Karen547 started about her father's comments to her about her catheter or Kickstart's hubby walking out on her when she started dialysis... sigh

The sad thing is that these reactions too are, I'm sure, common human reactions.

[kitkatz]

I have turned into such a bitch recently I am surprised the hubby does not tell me to just shut up!

[paris]

Mine doesn't know what to think of me some days, either.  I am sure it is hard to have your spouse or partner be where we are.  They want the life we had before---but so do we.  I get so tired of being "up" and making everyone else think this will all be fine.   I know they have a burden to carry, but  this isn't an easy spot for us to be in either.  Some days you can't help but be scared and mad.

[MyssAnne]

So true, Paris. And it's hard for them, I know, bless their hearts. All we can do is be grateful we have family and friends willing to BE there for us, as confused as they are!!  Heck, WE get confused too!

[kitkatz]

God, I want our lives back. The ones before dialysis and before the amputation.  Our lives have changed so dramatically in the past years. Everything is different.  I am so full af anger and anguish at things at times.   But then I look at my husband and am glad he is still here and he is glad I am still here. 

I guess leaning on each other as we go in the next phase of our lives is not so bad.  I pray God will help us.

[paris]

MyssAnne and Kitkatz, you are both right. Everything could be much worse.  Just a little pity party now and then!!  That's why I love it here. 

[RichardMEL]

The other difficult thing for those around us who care about us and love us is that often when things are down and we're pissed off with our situations and having a bad time of it we often can lash out at those closest to us because... well... they are there... And that's so not fair at all, but can happen.... So that is another stress on relationships.

[MyssAnne]

Good point, Richard, we do lash out. About all we can do is let them know it is not them personally.  Paris, I LOVE a good pity party every now and then!  Everyone is entitled to one, no matter what your situation, that's my philosophy!! And if you're gonna have one, make it a darn good blowout of a party!!!

[geoffcamp]

Went back in time and read this thread. I was still outraged at how most of our relationships go!  As for myself nothing has changed at all in the 5 plus year since this topic was brought up. I've dated some and I even met who I thought was going to be the one. She came to dialysis with me held my hand seemed great with everything but within a month decided "I was not independent enough of a man for her". I felt like a truck ran me over!!!  Not independent enough!!??  WTF?  I do everything myself I never asked her for anything. She said she wanted to come to a session and I set it up!  I did all the planning of our outings and activities!!  That was over a year ago and recently with in the last 3 weeks she has been calling and texting me. Went to lunch chatted and I'm still hurt by her actions and reasons so I'm having a difficult time dealing with why this attempted reconnection. I invited her to a hockey game on valentines day and she said she wanted to go and seemed excited. I'm just so confused. Am I in the friends zone?  Are there other reasons for the reconnection??  I feel like I have to keep up a guard at all times for risk of expecting or wanting too much. I had resigned myself to being alone the rest of my life before I met her a few years ago and felt the same way when she broke it off. I don't know what to think but I'm taking the approach of letting her do the chasing. I don't call or text her unless she initiates it first. (And that is HARD). I guess if we still have fun together and we have a good time at the hockey game I think I will ask her....  Hey so what's up?  I had feelings for you and I thought you did for me also. But you made a design and I backed out of your life at your request. Should I enjoy our time and have fun but expect it to be a friends only relationship?  And what happens if I still feel I want more from you??  I can't gauge her now!  She seems to want to get close again but I don't know and I'm afraid to cross that line and have it go wrong. At least she is a decent friend to hang out with and I'm scared if I push it too much I'll send her running again. It NEVER gets easier or less complicated!  UGH. It was kind of depressing to re-read this and know not a damn thing has changed in all these years!!!  I hope others are doing better job coping and have been more successful than I have in love and relationships!!  K well I think I'll stay away from reading old posts for awhile!!  LOL. It's just very frustrating how my life seems to be at a complete stand still and very little has changed for the better!!  G.

[cdwbrooklyn]

Geoff, you are being too hard on yourself.  When one seeks an ex-lover, it’s because he or she wants him or her back.  Sometimes, people say negative things toward dialysis patients and our lovers, unfortunately, listen to them.  I think she really was not comfortable with you being on dialysis but could not tell you immediately during the time you guys were dating.  Suddenly, focusing on your dialysis and not you as a man, she decided to leave and give you a lame excuse.  Now reality check, she met other men to realize they were not you and didn’t treat her the way you did. Now all of a sudden, you look good to her and she wants you back.

However, if you really want her back, give your demands and learn to forgive her. If she follows your demands, she really wants your back.  Just let her know that nothing changed.  What she left you for is still there and does she really want that to be a part of her life because it’s a part of your life and its not going anywhere.   

If we don’t learn to forgive, we will not move on in live.  Things are not the same with you as you have grown and know what you want and what you will not tolerate.  Don’t be hard on yourself.  I’ve always learned that if you love someone, let him or her go.  If he or she returns then it was meant to be according to why he or she returned. So find out what she really wants and make your decision and demands from there. 

Just my opinion…. 

[GoingThere]

My ex left me 3 days after I started Dialysis. I erased her from my memory. But it was tough then.

[geoffcamp]

 . UGH!  So depressing how much your life changes in every way and all in a 3 month period for me!!

My ex left me 3 days after I started Dialysis. I erased her from my memory. But it was tough then.

That sucks but it's almost exactly the same thing that happened to me. When I got sick and was not the same "normal" guy bringing home good money from job and wanting (and having energy to) to go out and do things like bars, parties or even a movie she bolted so fast!!!  (Not woman bashing just my personal thoughts!). It seemed like and still does quality women do not exist for me any more. Of all the ways ESRD has changed my life this one is by far the hardest to handle for me. I never imagined my life like this!!  And since I was transplanted even if I found the "perfect" person I can't have a family of my own. I've been tested and being sick or the drugs made me sterile. I always just took for granted I would have a family. But here I am at 43 years old living alone and year by year more and more any thoughts or dreams I had have become haunting nightmares!!!!  On the bright side (better quit my whining) I have survived very well. If you met me there would not be a chance in the world you would think I have all these health problems. And really that is a BIG part of the problem. How could a guy like me over 6 feet tall in decent shape expect anyone to understand inside I'm an F'ing mess?  Even when I look in the mirror I can't believe the difference in how I look and how I feel. I can't justify it. By all appearances I should be out there in life doing everything I imagined but my inside body just does not allow it!! 

cdwbrooklyn:   Good advise. It maybe true she has figured out that I'm a good catch (so to speak) after some time. I'm going to open the door and see how things play out because its worth a try. I'd rather give it a shot then wonder what if?!  But it still concerns me the ability of her (and others) just to do a complete 180 the second something happens!  So I will have to wrestle my mind into clearing the slate and give a shot at starting again. THX for advise, you know men (collectively) have NO CLUE what's going on in a woman's head!!!  LOL. So any advise from opposite sex is always welcomed! 

[jeannea]

I don't think it's women who can't deal with sick men. I find men can't deal with sick women either. I think it's people. They can't deal with what they don't understand. Most people don't want to think about mortality, their own or someone else's. They also have a Hollywood idea of what dating and falling in love should be and dialysis doesn't fit into that. It takes a real maturity to be open to people like us and age is no indication of maturity.

I am also 43. I was diagnosed when I was 22. I had thought the whole world of possibilities was open to me and then it turned upside down. I know I will never have love in my life. I do have some beautiful nieces who think I'm pretty great.