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Author Topic: :-( my turn to rant  (Read 3574 times)
boswife
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us and fam easter 2013

« on: May 05, 2010, 03:30:29 PM »

My hubby just told me...... "im thinking of giving up dialysis"      Yea, this is from a man who i have said has the best attitude ever and is so willing to give his all.......  How do i react to this.  I want to scream at him..  HELP me out here.. Is this a Phase??  it's been one year of dialysis now to give you an idea there...
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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 #1 on: May 05, 2010, 04:00:09 PM »

It takes a lot of energy to have "the best attitude ever" and to be "so willing to give his all".  When you've spent a year "giving your all", sometimes it means that there's not much left.  Please don't scream at him.  It's hard to know what he needs; we all need different things at different times in this never-ending journey.  Do you think he may possibly be depressed?  Depression is so common in dialysis patients, and it is treatable.  His soul must hurt. :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."
monrein
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« Reply #2 on: May 05, 2010, 04:22:52 PM »

MM is right I think and your husband may be feeling a whole bunch of things at this point.  One year in is an important milestone, it's long enough to know the ropes, to have made some kind of adjustment but also to realize that this is a long and bumpy journey and the words "emotional roller coaster" is not just a cliche for us.  He needs to talk and he needs someone who is able to listen and really hear what he's experiencing.  We can feel like such a burden, to ourselves and of course to those who love and care for us.  We can just feel so very tired, exhausted to the point of welcoming death and most of all we have to be able to say the words "I'm thinking of giving up dialysis" so that the idea doesn't become a big taboo, elephant in the room. 
Please suggest that he see someone to talk to about his feelings, don't scream or minimize his reality (I'm in no way suggesting by the way that you ARE doing so...my heart goes out to you as I can only imagine how I would feel were my husband the Patient in all of this) and he does need to be assessed for depression, very common to ESRD patients.
 :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Rerun
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« Reply #3 on: May 05, 2010, 04:25:28 PM »

I wish your husband would join this site so he could rant to people who know how he is feeling.  I helps to know you are not alone in your feelings.

                  :pray;
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boswife
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us and fam easter 2013

« Reply #4 on: May 05, 2010, 07:06:50 PM »

I had to get back to ya all to tell ya something and then saw these wonderful responses.  And yes, your all right.  It hit me very shortly after writing to ya that this is depression.  (why i didnt recognize right away i dont know, as i struggle with many of those issues myself)  We talked, I cried, and are going to get through this just like all the other *rides* we've been on together...  And if need be, he will join me in a "session" with the doc.  Thanks so much..  I wish he would join here too but he just hates typing and even reading.  I do read LOTS of stuff to him but now mabie he'll let me read, AND respond *for* him... hum, we'll see.. Thanks again..
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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 #5 on: May 05, 2010, 11:44:31 PM »

I wish he would join here too but he just hates typing and even reading.  I do read LOTS of stuff to him but now mabie he'll let me read, AND respond *for* him... hum, we'll see.. Thanks again..

That's a good idea!  You can be his IHD secretary!
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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."
paris
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« Reply #6 on: May 06, 2010, 03:48:06 PM »

Sounds like you made great progress in a short time!  Good for both of you.   I told my husband that I needed to beable to say "I can't handle this disease"  "I am so done with it all", etc. and for him to not get mad or try to rationally talk to me.  I will be ok in a bit, but for that moment, I was done.    He knows I am a fighter, but on occasions, I need to just let it all out.   I do hope you husband feels better after talking to someone.    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
lunadatura
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Fate happens, Destiny is what you do with it.

« Reply #7 on: May 06, 2010, 04:37:59 PM »

Please your husband needs to see a someone who is qualifed to work with depression in people who have serious illness. It is always a choice to stop dialysis but it needs to a conscious choice thought out carefully when NOT depressed. Get a refferal from your kidney center and or doctor to a mental health professional. Your kidney center should have a social worker you can call to talk with about this.
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
boswife
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us and fam easter 2013

« Reply #8 on: May 06, 2010, 08:54:46 PM »

i am going to keep *aware* of this from here on out so thanks to all for that info!!.  He did great today but we both know that ~~it~~will be lurking right around the corner waiting to catch us once again im sure.  I really appreciate you sharing your  experience Paris because it feels so real and easy to understand when spoken like you did..  I will know much better how to respond next time. (i actually did well with this one but i didnt want to  :embarassed:  )  Thanks 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
kitkatz
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« Reply #9 on: May 08, 2010, 09:48:09 PM »

Yeah, sometimes it just hits you, here you are stuck on this machine forever and your life has been shortened significantly.  Sometimes death likes to come by and tap on your shoulder and wave. There are days when I do not want to do this anymore, but then I pick it up and move on mentally.  I do know here will come a day when I will make the decision to stop dialysis. I hope my family will honor my wishes.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
livnlet
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« Reply #10 on: May 08, 2010, 10:05:15 PM »

Hi Boswife,

I know exactly how you feel. I am also the wife of a dialysis patient. He does not like to type or chat either so I joined this board to get more information.
It is hard sometimes to keep a smile on my face or show a positive attitude.
I keep telling him we will get through whatever it is together. So far he mostly accepts things as they are but sometimes I feel he just puts on a good front for relatives or friends.
After he had a triple by pass a few years ago I was the one that got major anxiety and was put on meds. After almost going under he was the strong one and helped me back to get a life again.I had to go inpatient 3 times to get of meds plus I gained 50 points. Instead of meds I finally did cognitive therapy and it worked.
I also had major health issues and had neglected them.
We just do the best we can each day to make our loved ones life a little better. Being married so long also helps...LOL  Thing that bothered me when we were younger don't face me at all anymore. I also learned to be a lot more giving.

Take care,
Elisabeth
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lunadatura
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Fate happens, Destiny is what you do with it.

« Reply #11 on: May 09, 2010, 04:28:37 PM »

livnlet - thank you for being such a good example of self care in a caregiver. As a dialysis patient and profesional mental health counselor I am glad you were brave enough to get help for your anxiety and found help in cognitive therapy - more people need to be willing to get help for mental health challenges.

you go girl !!
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Diagnosised FSGS via biopsy 11/2006
Started Dialysis 5/2009
hemo-dialysis except 9.09-6.10 = peritoneal then back to hemo
currently in center hemo 3x per week
Evaluation for transplant July 2010
Almost received transplant 8.13
repeated calls and admissions for transplant since then but no kidney yet
3.1.14 got ideal kidney and having exceptional recovery - creatine went from 8.5 to 1.1 in less than 2 weeks.
boswife
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Posts: 2644


us and fam easter 2013

« Reply #12 on: May 09, 2010, 08:13:38 PM »

Thanks so much..... some things that people share sure do bring peace to others just knowing *youre* out there and living through it...
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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
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