How much of ESRD do you share with your spouse?

[MooseMom]

I don't want my husband to be my "caregiver".

After reading so many posts from the spouses and caregivers on this forum over the years, I am beginning to suspect that I am internalizing so many issues related to my kidney disease and am being more and more closemouthed about it.  I don't know if this is a good thing or not.  I don't bother telling my husband when I have labs or appointments or tests or much of any such thing anymore.  I mapquested University of Wisconsin- Madison because I'm going to have to go up there for a pre-eval appt sometime soon, and I just envisaged taking the trip by myself.  I've thought about how I will drive myself up there if I should get "a call", again not thinking about the concept of my husband coming along.  I've been so intent upon keeping him out of my medical drama that he is not really my "partner" in this anymore, and again, I don't know if this is a good thing.  If you start protecting your spouse from the affects of your disease, both physical and emotional affects, it seems to destroy some of the intimacy that is so crucial to marriage.

How much do you tell your spouse about the practical, logistical, physical and emotional chaos that comes with CKD/ESRD? 

[Katonsdad]

Wow  MooseMom . I don't tell her . you think I a, going to post It here ?  (LOL)
My wife is not my care giver . She is my Care partner as is my son ,  At 10 years old , we went out for dinner and they gave me the wrong dish . It was covered in gravy.  I returned the meal and he said . Gravy is a liquid food . Isn't it ?  He is very careful what he offers and my wife tries to stick to a ESRD shopping list for me while still buying what she an the 10 yr old likes.    As far as what goes on at the center . I don't tell her about the  patient who you
see for weeks then he never comes back , She does not need to hear about that. She like to see good labs . as I do . And is concerned about how to make them better.  She cares about what happens but does not pry about everything.  If I'm tired afterward . she knows and does not push me.

I need my care partner and she needs me.  We are thriving together with the support of each other and our little man

Katonsdad

[ToddB0130]

I am not partnered, but I believe you should be keeping your partner appraised of everything.  Can (or should) he make every appointment ? Not really.  But I think it would be good for him to know what your labs are coming back as and certainly what you're doing about your transplant so that he's prepared to help (AND DRIVE) when you need him to be.  I try to keep family and friends updated on issues and where my overall numbers stand (and what doctors I will be seeing in a given week).  I find it's better to have people to share it all with.  Your health affects your partner too,  so I say keep him informed.

[justme15]

my view on this changes each day. some days, I'm like you, and just want to handle everything myself. I don't want to burden him with my  issues and  problems, because frankly he just doesn't understand them.  on the other hand I feel he needs to know what I am going through so that he *can* get an understanding.   he recently did a day long evaluation to be a potential donor. after sitting all day in the MD office, being interrogated by various doctors, poked and prodded during the physical exam, he said he felt sad that I have to through this!  I didn't want him to be sad, but i kind of felt relieved that he was finally understanding  some of what I have to go through as a kidney patient.
he also went with me to one of my neph appointments and when the doc talked about how my kidneys were failing and I really needed a transplant, I think it really hit him then. 
So to make a long story short, I feel I need to keep him involved so that he understands the seriousness of my situation. sometimes I think he is in denial about what is happening to me.

[monrein]

Mine knows everything that's going on...good, bad and ugly...but I do pretty much everything I need to on my own.  All labs, neph visits, bone densities, mammograms, gynecologist, dermatologist, dentist etc.  I don't view him as my care giver at all, no way, shape or form.  I view him as my husband and pal.  Having said this, if I need him to go with me to a particular appt. I'll ask him to...just recently I needed someone to get me home from a gum surgery appt.   He's around for transplants and takes me to the ER if I need to go there.  I also send him home asap when it's clear what's happening and I urge him not to visit the hospital every day necessarily and not to stay too long when he does.  Sometimes I'll tell him NOT to come to the hospital, like when my first trx had to be removed two months after the second one went in and I wasn't out of surgery until midnight but he came anyway because he wanted to be there.
I do talk about my fears and worries with him but I can't dwell on them too long myself so I like to put a moratorium on these kinds of things for both of our sakes.  We've been at this a long time...

[Traveller1947]

For me, caring for and caring about amount to the same thing.  If your situations were reversed and your husband was the one with kidney disease, would you be content to sit by while he went through all that's involved with this disease by himself?  I don't think so...

[big777bill]

  My wife and I go through this and all the other health problems I've had over the years hand in hand. We do everything together whether it's her or I with the problem, we are partners to the end. I wouldn't want it any other way. We took each other for better or worse richer or poorer. Those vows meant alot to the both of us. That's how we make our marriage work and so far it hasn't failed us. 

[cattlekid]

Okay, here's my opinion and it probably ain't gonna be much liked by a lot of folks here.

I must preface for those of you who don't know me that I am the dialyzor and my DH is my care partner.  Hell, I don't even want to call him my care partner.  He tapes my needles in, pulls my needles out and helps when I need help in an emergency situation or can't reach something.  That's pretty much where it stops when it comes to day to day.

So here goes....there is caring about someone and then there is obsessing.  No matter what, the dialyzor is going to do what s/he wants to do.  If that means that the dialyzor is going to not be compliant (God I hate that word) with meds, diet or treatments, then that's the way it's going to be.  The only person that can change that is the dialyzor themselves.  If my husband started obsessing about every bite I took, every aspect of my treatment and every lab result, I'd go bat-poo crazy. 

None of this is to say that he isn't concerned.  I hear it when he goes into the bedroom to have a phone conversation with a friend or a family member.  He thinks I can't hear him and I don't eavesdrop on purpose, but if I am in the room next to him, I can hear his end of the conversation and I can hear the concern in his voice.  But he is a veteran of more surgeries and medical procedures than I could ever fathom (born with hydrocephalis and several brain surgeries as a child) so he takes all of this in stride.

Having said all that - what do I share?  Well, he went through partial NxStage training with me, just enough to know what to do in emergencies.  Other than that, he knows when my dr. appointments are and I always share the results in general terms. He takes me for procedures when he needs to, although I try to always be able to drive myself to and from as his job does not afford him a lot of time off.

In the end, we are still husband, wife and best friends.  ESRD has not changed any of that.

PS. to MooseMom - I am going to start evaluation at UW-Madison as well.  We can drive together if we can swing it for the evals.   

[CebuShan]

Moosemom, Cattlekid, how about we make it a road trip? I, too, am going to UW MadIson! In answer to your question, I share as little as possible. My husband really doesn't handle it well. He gets angry if I am too tired or don't feel well. I know it's because he's frustrated. Sometimes it's hard to take though. We'te been married 27 years and have split up twice since I've been sick. I stopped by his work one day and his coworkers said they were glad I was feeling good because they can always tell how I am feeling by the way my husband acts. Since I refuse to be the cause of my husband losing his job, I simply don't tell him unless he asks directly. Just before Christmas, the drs were concerned about an echocardiogram that I had. I told no one except my pastor. I didn't want to ruin anyone's holidays. I told him after I had a second echo done in January that was much better. I fully expect him to completely leave sooner or later. His older brother (whom he idolises) left his wife of 30+ years as she was dying of cancer. She passed a week ago and he said he is not going to the memorial service! Jerk! Anyway, it's nice to have someone here to help with the heavy lifting but I'm not going to hold my breath that it will last.

[cariad]

Moosemom, Cattlekid, how about we make it a road trip? I, too, am going to UW MadIson! In answer to your question, I share as little as possible. My husband really doesn't handle it well. He gets angry if I am too tired or don't feel well. I know it's because he's frustrated. Sometimes it's hard to take though. We'te been married 27 years and have split up twice since I've been sick. I stopped by his work one day and his coworkers said they were glad I was feeling good because they can always tell how I am feeling by the way my husband acts. Since I refuse to be the cause of my husband losing his job, I simply don't tell him unless he asks directly. Just before Christmas, the drs were concerned about an echocardiogram that I had. I told no one except my pastor. I didn't want to ruin anyone's holidays. I told him after I had a second echo done in January that was much better. I fully expect him to completely leave sooner or later. His older brother (whom he idolises) left his wife of 30+ years as she was dying of cancer. She passed a week ago and he said he is not going to the memorial service! Jerk! Anyway, it's nice to have someone here to help with the heavy lifting but I'm not going to hold my breath that it will last.

CebuShan, I am lost for words. I had no idea the stress you were under.

[lmunchkin]

I think it is different for the man than the woman. Women react with emotion and Men do not.  My J tells me all the time, that if it were me he would be there just as Iam. Maybe so, but I don't think he would.  I can't see him coming home after working all day and putting me on the machine, doing the bills,cleaning the house, doing the laundry, going to pharmacy a couple days a week and getting grocery's and in the summer time-mowing, weed eating,ect.....  Not to mention, those women who have young children to watch after, God help you!
Do I think a man, husband or bf would do the same for you, I tend to think not, but know there are a few in that rare occasion that would.

It's not their fault necessarily, it's in their DNA!  Women are the nurturers by nature. Men are the providers!

Now having said this, I do believe that they would be there for us if we ever needed them. My husband is a good man, but if the tables were turned, I do not think he could do the same for me. Even when we first got married, he had it made cause I did everything!  I was glad to do it and very Blessed to have him to share my life with. But let's face it yall, this disease has turned our worlds Upside down.  Our loved one's never asked for this and we didn't either.

So, MM, I would let him in to help some!  You are a very independent person like me, but you know it doesnt hurt to lean on him every now and then!  I suspect that you will be the one doing it all, as far as D goes, but He should be there for you in some sort of way helping you out.  I would certainly have him go to training, so in case you should need him. But yea, I think given the dynamics, you will certainly do a lot of it on your own.  That could be a good thing too!

lmunchkin
 

[MooseMom]

Thanks everyone for your replies.  Every couple handles these types of things differently, and I guess we all just do what works for us. 

I really should say, for fairness' sake, that my husband has a very demanding job and works long hours.  Once a week after work, he also teaches graduate courses in law.  So, he has a lot on his plate.  That is another reason I am gradually keeping more and more to myself. 

I am in the process of gathering all of my test results to send to Madison, but one thing I needed to do is get an updated chest x-ray.  The results came in the mail on Saturday, and I read with consternation a few phrases that signaled that all was not absolutely perfect.  I of course checked online to see what these words meant, and I told my husband that I needed to review the results of my report.  He didn't even ask what I was concerned about.  So I am not sure that I will ever share any lab result ever again. 

I would like to be generous in thinking that he was distracted by events at work and wasn't really tuned into me.  To be fair, that's probably true, but it still stung.  He has often commented that he doesn't like drama, and I jokingly reply that neither do I, but what can I do?  hahaha...uh, hmmm.

But I also think about the possibility that he maybe doesn't want to bring kidney stuff up because it might upset me.

Yes, we've had all of these conversations, but after seven years of this oppressive waiting game (will these labs be the ones that show I need dialysis?), we've had just about every variable of every conversation imaginable.

The really unpleasant things he just doesn't like to talk about...stuff like living wills, etc.  He's just gonna wing it if I croak.  Well, it won't be my problem, then, will it.  LOL!

Cattlekid, I don't see anything in your post that we wouldn't like.  I can't imagine my husband telling me off for eating chocolate because he's the one who buys it for me when he reckons I need a treat.  HE is the one with self-control issues, not me!  And he has no idea what meds I take.  Then again, he's never asked.  All I can do is tell him how to get the information he may need if there is an emergency.  He at least knows the name of my neph, and he knows how to get to the ER. 

I guess I posted this question because I am sort of in limbo.  I've done this for so long, and there is not anything new I can say to my husband, but the feelings are still there, and I don't know what to do with them.  I feel all of the stuff that is normal for any of us to feel, and I don't want to keep banging on about it.  I see the benefit of "sharing everything", but I am increasingly finding it difficult to do so because I fear him FINALLY saying, "Oh, do shut up about it!"  Not that I think he really would say that, but he might well think it and be too kind to actually say it.  That would be a deal breaker in my world.

Looks like there may be a girls' night out in Madison!  Whooppeeeee! 

[Lowilson]

I am exactly you!! I keep most of it to myself

[MooseMom]

Moosemom, Cattlekid, how about we make it a road trip? I, too, am going to UW MadIson! In answer to your question, I share as little as possible. My husband really doesn't handle it well. He gets angry if I am too tired or don't feel well. I know it's because he's frustrated. Sometimes it's hard to take though. We'te been married 27 years and have split up twice since I've been sick. I stopped by his work one day and his coworkers said they were glad I was feeling good because they can always tell how I am feeling by the way my husband acts. Since I refuse to be the cause of my husband losing his job, I simply don't tell him unless he asks directly. Just before Christmas, the drs were concerned about an echocardiogram that I had. I told no one except my pastor. I didn't want to ruin anyone's holidays. I told him after I had a second echo done in January that was much better. I fully expect him to completely leave sooner or later. His older brother (whom he idolises) left his wife of 30+ years as she was dying of cancer. She passed a week ago and he said he is not going to the memorial service! Jerk! Anyway, it's nice to have someone here to help with the heavy lifting but I'm not going to hold my breath that it will last.

CebuShan, I am lost for words. I had no idea the stress you were under.

I second that.  I don't expect my husband to make all of my problems go away, but I don't expect him to ADD to them, either.  I'm really sorry to hear this, CebuShan.

[MooseMom]

I am exactly you!! I keep most of it to myself

And why do you do this?  Is it just the way you're wired, or do you think your spouse doesn't want to know?  What DO you share, if you don't mind my asking?

See, I can't really answer those questions.  I don't think I've always been wired this way; I think I morphed.  Maybe my wiring has changed.

[Lowilson]

I think I am wired that way. I do not like to burden people with my issues. Sometimes I will tell him things but I not even sure he knows how to respond so I find it easier not to talk about it. I  waited for months to tell him about the transplant stuff. I was going to go by myself but they said you had to bring someone so I thought it might come off weird if didn't bring him.  For me this is a personal journey I find easier talking with you folks on the  forum.

Lori

[MooseMom]

For me this is a personal journey I find easier talking with you folks on the  forum.

Lori

See, now, this brings up another conundrum for me.  I suspect that a lot of us find it easier talking with other IHD members because 1.  they really understand, 2.  there's usually someone around at 3AM, 3. you can be as terror-stricken or as fed up as you like and no one will chastise you, and  4.  you don't have to look nice.  LOL!

I use IHD extensively (being a Premium Member for Life because I jibber jabber so much) for just this purpose, but I sometimes suspect that my husband resents it.  I think he may feel like I should do all my talking to him but deep down would probably hate it if I did.  I don't want to have to sneak onto the internet...that just seems so porny.

[MooseMom]

For me, caring for and caring about amount to the same thing.  If your situations were reversed and your husband was the one with kidney disease, would you be content to sit by while he went through all that's involved with this disease by himself?  I don't think so...

No, I wouldn't be content to "sit by", but there is inherent danger in using oneself as a measuring stick.  He and I are two different people, and it is not always fair to expect from him what I would expect from myself.

Frankly, it wouldn't occur to me NOT to have lists of all of his meds and his labs and his doctors' contact numbers and so on and so forth, but that's just me.  To be fair, HE probably wouldn't handle his CKD the way I handle mine.  There is no way on God's green earth that he would EVER stick to the renal diet.  Absolutely no way, and he has said as much, so I'm not making this up. 

[lmunchkin]

You know what MM, and I mean no disrespect, but I think you and your husband are the "Reverse" of me and J.
You are me with CKD and your hubby is mine without it.  Thanks MM, you just proved my Point! 

lmunchkin
 

[MooseMom]

You know what MM, and I mean no disrespect, but I think you and your husband are the "Reverse" of me and J.
You are me with CKD and your hubby is mine without it.  Thanks MM, you just proved my Point! 

lmunchkin
 

LOL...I've always suspected this!  So true!

[Desert Dancer]

As far as the day to day stuff - setting up the machine, disinfection, handling supplies - I do all that myself. He works long hours and is in a lot of physical pain himself, so I don't want him to have to do anything when he gets home. But I was that way with everything even before dialysis. Besides which, my taking on everything allows his life to be impacted as little as possible and that's the way I want it. I've adjusted to the new normal but I'd like him to have the old normal as much as possible.

As to the treatments themselves, I also do everything myself. I'm not going on the machine two hours after he gets home and I certainly don't expect him to stay up way past his bedtime to help me. He's got to get up at an ungodly hour to go to work and my circadian rhythm has me on a 2:00 AM to 10:00 AM schedule, has all my life.

I schedule all my appointments during the day while he's at work because it doesn't make sense to drag him a half-hour each way after he's just worked all day, just for a five minute visit. But he always asks me how they went and - if there are issues I want to address with the doctor - he always reminds me to ask those questions. He knows about when I take my labs during the month and always asks for the results. If he knows I'm already not feeling well he will gently and humorously suggest that MAYBE that 15th chocolate chip cookie isn't such a great idea. He's always right, of course, and he doesn't nag.

Now, having said all that I think there's a big difference between 'taking on all responsibility' and 'shutting out your partner'. You can do one without doing the other. Andy has always been incredibly supportive and concerned. For instance, the four months I was down with my back he did everything and I DO mean everything, because I was utterly immobilized. Some nights he senses my reluctance to dialyze and he'll just quietly go and set up the machine in order to delay that moment for me. Some nights he'll stay up to help me because he knows that - while I don't physically need him to get me on the machine - sometimes I need those loving and encouraging eyes looking at me over the face mask.

I wonder how willing he would have been to do all these things if he sensed an attitude from me of, "Don't get involved and leave me alone. This doesn't concern you." I know what my reaction would be to that kind of freeze-out, and he and I are very alike! "Fine, do it yourself. Don't ask me for anything." Sometimes I do get concerned he feels I don't need him and I have expressed that concern to him, but he doesn't feel that way.

I think another thing that helps is I've always had a pretty laid-back attitude about my kidney disease and that's carried over into dialysis. I just don't see the point in obsessing over things you can't change. I mean, I was diagnosed in 1980 and didn't start dialysis until 2010; can you imagine 30 YEARS of being stuffed up with fear and apprehension? Me, neither. I think if I made kidney disease and dialysis the centerpiece of my life, obsessing over every lab result and talking of nothing else - as my father did, his whole life was "Woe is me, I have kidney disease" - it would drive Andy right up the wall. Hell, it would drive me right up the wall. I've always treated it in a very matter-of-fact way and I think that's a factor that's allowed us to integrate dialysis pretty seamlessly into our lives. Like the donkey in the story, I've "shaken it off and stepped up".

I know I'm lucky to have such a partner. Really, really lucky. I know it isn't so for everyone (CebuShan  ) and I really wish it could be.

[MooseMom]

I wish I could be more matter of fact about my kidney disease!  Even though I was diagnosed 20 years ago, my attention was diverted from my kidneys to my son's developmental issues, and it wasn't until years later that we all realized how crappy my kidneys really were.  Maybe that was a silver lining, but I hesitate to call my son's autism a "silver lining" of any sort.

I am still angry about all of this, and I think there have been times when I've wanted to shut my husband out, but frankly, if I did that, I don't think he'd notice.  Like most of us, he is immersed in his own issues which for him are mainly job related.  Being the city attorney, he has been the one who has had to lay off many city workers due to budget constraints.  He doesn't decide when and who to lay off, but he has somehow been appointed to be the one who has to deliver the bad news.  This has been going on for three years now, and it really does get to him.  So I can't blame him for not making my kidneys the subject of his every waking thought.

Being freaked out for such a long time HAS driven me up the wall, but I think I turned a corner after the LV meetup.  Even my husband noticed afterwards that I didn't seem quite so "desperate" (his word), so maybe that's some small step forward.

But just when things seem to be calming down, something makes my CKD rear its ugly head.  As I mentioned before, I am jumping through a new set of hoops to get double listed, so it's like reliving a nightmare.  While I am grateful for the opportunity, it just makes me tired and frustrated all over again, and I don't know what to say to my husband about it without sounding like the proverbial broken record.

My husband and I have never had normalcy.  I found out about my severe CKD just months after we were married.  I don't have a "normal" to try to return to.

It would help if I had friends or family around, but there is no one.  My parents are dead, and we are not on speaking terms with my husband's parents (who live here in town just five minutes from us).  So, that leaves me with a lot of emotional baggage that I'm not always sure quite what to do with.

[Jean]

Of all the things I have read in this post, the one that hit the hardest was MM's statement of not knowing what to do with the emotional baggage. I am on two anti-depressants, mild doses both, and still I cry every day. I am so afraid of this stinking disease advancing, that I dont know what to do next, mainly I suppose because there is no control over what is next. The little things that go wrong with ones body as they age are depressing enough not to mention the big ones. So, I had to beat my husband over the head to make him stop telling family that " Jean has a little kidney problem". No, dear this is not a little kidney problem. It is one stinking big kidney problem. Once He finally realized how serious this was, he became much more understanding. However I know that before I start to tell him I have yet another problem it will be prefaced with, remember what I told you about such and such, because evidently he puts my disease out of mind. I wish I could. He does however understand the fatigue and that is a blessing in itself. If I had to have a husband nagging me about house cleaning, I would just go out in the back yard and shoot myself. So grateful to have this opportunity to discuss our problems with others.

[Riverwhispering]

This thread is hitting me hard.  I've been alone with this disease since Sept 3rd when my "non husband" got busted when he was discovered.  Long story but it comes down to he is married to someone else since 1981 and our 6 year marriage is not legal.  He moved out on Sept 4th.  so I'm on this part of my journey of life alone now.

The only family support I have is my Son who doesn't live near me.  I seem to be crying at a drop of the hat.   I can't share my fears with anyone because I'm here alone.   I try not to get too detailed with what I'm going thru with the people I do know here because I have no real close friends here.  I'm moving back to where my son and friends live hopefully this summer if all goes well.

So just my two cents for you Moose Mom is for your own sanity you need to not be alone in your journey of life.  Pick the important stuff to share with him and keep the little stuff to yourself.

[cariad]

This thread is hitting me hard.  I've been alone with this disease since Sept 3rd when my "non husband" got busted when he was discovered.  Long story but it comes down to he is married to someone else since 1981 and our 6 year marriage is not legal.  He moved out on Sept 4th.  so I'm on this part of my journey of life alone now.

The only family support I have is my Son who doesn't live near me.  I seem to be crying at a drop of the hat.   I can't share my fears with anyone because I'm here alone.   I try not to get too detailed with what I'm going thru with the people I do know here because I have no real close friends here.  I'm moving back to where my son and friends live hopefully this summer if all goes well.

So just my two cents for you Moose Mom is for your own sanity you need to not be alone in your journey of life.  Pick the important stuff to share with him and keep the little stuff to yourself.

Oh my god. 

Yes, move. I am glad you have that as a viable goal.