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Author Topic: small rant and honest plea for input  (Read 5471 times)
boswife
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us and fam easter 2013

« on: December 15, 2011, 07:18:21 AM »

I dont know that this is really home D related, but can be moved to proper place if so desired  ;D

I am at a loss as to my position at times.  Being the 'used to be' cargiver/carePartner/wife , i feel i have turned into the mother/nag.  I am always always saying, do you really need that water, you can have one but not two of those (whatever it may be) NO you cannot have that, take this, take that, do this, do that...bla bla bla  And as of late, always on the verge of tears because i can't control everything and make him better.  He is very good about following what i 'ask' of him. Have i made him now dependent on my nagging??  And how much nagging before he just understands that i dont want to nag, i just want him to 'think' for himself a bit more., AND would i now be happy with that or would i still have the neead to nag as i feel i have taken possession of that body that i clean out for him each day :(  He's precious to me and i dont know if i've created a monster by "helping" too much  :'(  I need to hear from the Dialosizor and the other carepartners.  How do you feel when someone is ALWAYS watching everything you do... Do i need to back off and let him think at least some for himself???  Anyway, thanks, and bless ya all...
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Meinuk
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« Reply #1 on: December 15, 2011, 07:55:03 AM »

So, stop.  Don't stop dialysis, but stop nagging.  When you find yourself ready to say something, bite your tongue and let him deal with the consequences.  You won't let him do anything dangerous, but think of this as like tough love with a child.  Your marriage turned a corner, and all of a sudden, you are Mommy caretaker.  Ratchet that back a bit.

This will be the hardest thing that you will ever have to do. But don't go cold turkey.  Start small.  Let him build up his confidence.  You took over, and he liked that.  But that dynamic isn't working for you, so because you didn't take over in a day, it can't be changed overnight.  You can't control everything.  But you will have to admit to yourself that there are some things that are beyond your control.

I am a control freak. (a serious control freak) but I have been through enough to realize that I need to step back and admit that some things are "beyond my control". If I want a relationship to maintain a healthy dynamic, I have to let go and bite my tongue.  (I'm lucky that I still have a tongue).

If nagging isn't working for you, but seems to be working for him, and you are comfortable with talking about it, talk to him about it.  But please, life is about small victories, not major battles, even though you are at your wits end, this won't be fixed in a day. Start with the water.  Let him drink it.  And when he has to deal with fluid overload, let him deal with it. 

Ask him to do small things for you. He is responsible to you as a husband.  You have needs too.  Here is my example (this may sound silly and trivial, but it is a small acknowledgement that he is needed).  In a relationship, I believe that a woman should never have to open/mix or pour her own drink.  If we're having wine, he opens the bottle and pours the drink.  If we are entertaining, he brings me my drink.  I smile and say how lucky I am to have someone bring me my drink, and his actions are appreciated - cherished actually. It is the small things in life that matter.  The big problems always seem to sort themselves out.

I hope that you can find some kind of relief in this.  He is still the man that you fell in love with and married - even though his health has changed, that man is still in there, hiding behind the fear of life without working kidneys.

 :grouphug;

I have to add that when my kidneys were failing, I broke it off with EVERYONE. I lived alone, took care of myself, and everyone who loved me knew that if they crossed the line of interfering, the would not hear from me again.  (I am a tyrant)  I never had a problem with anyone nagging me because I never had anyone to nag me. So, in a sense, I am the opposite of your husband.  But, after I had my transplant, I found myself alone with no one and I needed to rebuild my relationships, because all of a sudden, I realized that I had a life with no one to share it with.  It was a very sad, lonely scary time.  Worse than when I was on dialysis. (at least when I was on dialysis I had IHD). It has taken years for me to rebuild my emotional life (and it is still a work in progress).  This is why I am stressing that it is baby steps at first.  Been there, done that, and now I am reaping the benefits - but it was a long, arduous journey.

« Last Edit: December 15, 2011, 08:11:50 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
Gerald Lively
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« Reply #2 on: December 15, 2011, 08:48:10 AM »

Emotionally this is a big deal.  Practically speaking, you only need minor adjustments.

Change the words you use to avoid the nag issue.  If the problem is how you feel, deal with it. If the problem is his complaint, then pull up a chair and have a good long talk.

A friend of the family in a similar situation tried giving him (the patient) a bell for him to ring everytime he needed something.  He would ring it at times, just to test his emergency communications system.  It eventually drove her nuts.  Don’t give him a bell or anything close to the equivalent.  That bell problem became so bloated that it dominated their marriage.  My wife gave me a stick with Christmas jingle bells on it as a joke, but my hearing is fading and I couldn’t hear that bell(s). Just as well.

We have an area in the house where two comfortable chairs face each other and we call that the pit.  There we discuss every minor to major problems or issues we want to solve.  Per my profession I call this consensus building.  I try to place myself in her shoes.  I don’t know how she does it but I know this works.  For us.  I may have an opposite problem in that I express my appreciation almost hourly.  Also, I tell her how sexy she is and I play pinch-butt when possible.  At 73 what else can I do.  Okay, so I snap her bra now and then.  Heaven forbid if I broke that bra, things might tumble all the way down to the floor.  (Her reward for those “burn your bra” days).

Love, my dear lady, can be anguish or Nirvana, you must choose. 

I have to get.  Dialysis awaits my presence.  I didn’t proof read this one, I hope it is together.
Gerald

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Hodgkin's Lymphoma - 1993
Prostate Cancer - 1994
Gall Bladder - 1995
Prostate Cancer return - 2000
Radiated Prostate 
Cataract Surgery 2010
Hodgkin's Lymphoma return - 2011 - Chemo
Renal Failure - 2011
Renal Function returned after eight months of dialysis - 2012
Hodgkin's Lymphoma returned 2012 - Lifetime Chemo


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have their roots in human needs.

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Meinuk
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« Reply #3 on: December 15, 2011, 09:56:43 AM »


Love, my dear lady, can be anguish or Nirvana, you must choose. 


Brilliant!!! I am so steaing this line!
« Last Edit: December 15, 2011, 10:11:07 AM by Meinuk » Logged

Research Dialysis Units:  http://projects.propublica.org/dialysis/

52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

“To doubt everything or to believe everything are two equally convenient solutions; both dispense with the necessity of thought.” - Henri Poincare
cattlekid
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« Reply #4 on: December 15, 2011, 10:09:12 AM »

I am the dialyzor.  I would be furious if my husband was constantly watching and commenting on what I did/ate/drank.  I know this sounds harsh but you are going to have to STOP thinking that you have control over him.  He is his own person and will do what he feels is right for him.  You're probably going to have to bite your tongue until it bleeds but the situation you have set up is not going to continue to be workable for the long-term.  Let him deal with the fallout of his choices.  This is the only way he is going to learn the consequences for his actions. 

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MooseMom
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« Reply #5 on: December 15, 2011, 01:21:45 PM »

Whether you are the dialyzor or the caretaker, you face loss of control, and that is one of the hardest things about learning to live with chronic illness.

You are not going to let him die.  That said, you can take the advice given here and let him start making his own choices and living with the consequences.

Being a spouse is NOT synonymous with being a caretaker.  He needs a wife, not a mommy.  And you need a husband, not an adolescent.

You are one of the smartest people I know, and I suspect that you know exactly what to do.  You're just not quite ready to do it yet and need reassurance that it's ok to step back.

You'll both be happier.

 :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Poppylicious
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« Reply #6 on: December 15, 2011, 02:37:38 PM »

Whether you are the dialyzor or the caretaker, you face loss of control, and that is one of the hardest things about learning to live with chronic illness.

You are not going to let him die.  That said, you can take the advice given here and let him start making his own choices and living with the consequences.

Being a spouse is NOT synonymous with being a caretaker.  He needs a wife, not a mommy.  And you need a husband, not an adolescent.

You are one of the smartest people I know, and I suspect that you know exactly what to do.  You're just not quite ready to do it yet and need reassurance that it's ok to step back.

You'll both be happier.

 :cuddle;
Absolutely.

I was a nagger and every single time I nagged I knew it was wrong of me and I knew I was upsetting Blokey (he would tell me!).  It took me a long time to learn not to nag and not to question everything Blokey was doing.  He is a big boy and big boys can make their own choices.  It is so difficult to watch them make the wrong choices, but sometimes we just have to let them.  Of course, since the transplant my nagging has begun again but this time it's the reverse of what I used to nag him for.  Now I'm having to learn to bite my tongue again.

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
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sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
boswife
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us and fam easter 2013

« Reply #7 on: December 15, 2011, 02:54:10 PM »

whew,,, thank you  :angel;  <-----don't know if that angel quite depicts what I'm trying to portray....hehe....  as I'm just really wanting to show my humbleness and gratitude to your wonderfully helpful replies..  i give thanks to each  :)
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
MooseMom
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« Reply #8 on: December 15, 2011, 03:04:11 PM »

I think of you caretakers, and it doesn't escape my notice that you are all women.  I can't imagine my husband nagging me about my diet or whether or not I've taken my pills!  He doesn't know my allopurinol from my atenolol, and he still gets potassium and phosphorus confused!  Seriously, are there any wives out there with CKD/ESRD who have husbands who "do" for them?  I sure don't, and I don't recall many posts from dialyzing wives complaining that their husbands nag them about their diets or their fluid intake. :rofl;

If I had to depend upon my husband to sort me out, I'd be dead.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cattlekid
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« Reply #9 on: December 15, 2011, 06:52:46 PM »

Since I started NxStage at home, my husband will tape my needles and lines, run the centrifuge for me when I do blood draws and pull needles.  He also is in charge of breaking down boxes and taking them out to the garage and getting me blankets, candies and whatever else I need while I am doing my treatments. 

What I think is cute is that he sits with me while I am doing my treatment even though told him he doesn't have to be in the same room as long as he is within shouting distance.   ;D

As far as diet and fluid, he knows what I can't have and if we are going to eat over at his mom's house, he reminds her of my restrictions.  Other than that, he doesn't nag about diet or pills - except for my Requip, which he nags at me to take every night.  But that is self-preservation on his part because it keeps me from kicking him in the shins all night long.   :rofl;

I think of you caretakers, and it doesn't escape my notice that you are all women.  I can't imagine my husband nagging me about my diet or whether or not I've taken my pills!  He doesn't know my allopurinol from my atenolol, and he still gets potassium and phosphorus confused!  Seriously, are there any wives out there with CKD/ESRD who have husbands who "do" for them?  I sure don't, and I don't recall many posts from dialyzing wives complaining that their husbands nag them about their diets or their fluid intake. :rofl;

If I had to depend upon my husband to sort me out, I'd be dead.
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lmunchkin
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« Reply #10 on: December 16, 2011, 06:49:35 PM »

Been there done that Boswife.  Best thing to stop his total dependence on me was, getting back to my work.  He can't holler everytime he wants something.  My being back to work not only gives me time away from the situation, it also gives him the confidence that he can be on his own and take care of what he needs to do.

I use to always tell J to not shower until I am home to help him.  With one leg, he manages to grab on a bar that I installed in the shower and swing to a seat he has in there.  He don't need me at all.  It is amazing what he can do when Im not there.  He barely bothers me at all until I put him on D. machine and yet that is understandable.

Like you, I love my husband too!  Want him to live many more years, but we do need to figure ways to make them less dependent on us.  It helps their ego's.  Just think of things around the house, that you can ask him to help you with.  I can almost guarantee you he will jump at the chance to please his woman!  He will pound his chest with Joy, when you tell him, "oh, baby, thanks you so much for doing that / or /wow, I needed to get that done and I should have asked your help sooner".  Those are small things, but really big stuff to our guys!  You know what I mean.

Since wev'e been doing hemo at home, its like we have become closer, if that is possible.  But hon, don't feel bad about caring to much for your man. Nothing wrong with it, just proves your love for him.  But do figure ways to releave yourself of some things that he CAN do.

You sound just like me, Boswife, but I knew I couldnt keep it up forever, that's when I realized, I was making him "feel" useless. By no means, was that my intention, it is out of my undying love for this wonderful man I married.  So as it is for you!
 
I believe once you change the way you react to him and He will be the Hero that you have missed for quite sometime. Don't push so much and try pulling him in. You are still the loving wife he married and wants to please at your insistance.  Don't be so hard on yourself, there is nothing wrong in loving too much!

lmunchkin

 :kickstart;

P.S. He is lucky to have you, Boswife.  And he knows that too!
« Last Edit: December 16, 2011, 06:53:08 PM by lmunchkin » Logged

11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
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