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Author Topic: Things will get better, right?  (Read 4653 times)
justagirl2325
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« on: October 06, 2016, 12:00:16 PM »

I just need to rant.  I'm getting to the end of my rope emotionally.  Hell, I might be way past the end.  He's back in centre for now after his surgery, which should be easier on me, except now the only time I see him is when I'm home from work, he's exhausted, sleeping and cold, sore from surgery, crabby as hell, I feel like I can't make noise at night as his bedroom is right next to kitchen and the dishes sit and stink and the clothes are in the dryer unfolded and his bathroom is mess from him being sick and now his nurse is sending him cutesy texts which are pissing me off (really do you have to text him good morning and a cute pic...that's something we first did as lovers).  I'm just mad all the time lately.  I've used up all my holidays taking time off when he's sick, not that it would matter, we are about $21,000 in medical expenses so far with no reimbursements yet (thanks Canadian government for taking six months to process anything).

I'm in therapy but not sure how this will ever get better.

 :rant;
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PrimeTimer
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« Reply #1 on: October 06, 2016, 01:33:58 PM »

What I've been doing is tackling just one thing at a time. I try to knock something off my list every day but if I can't, I let go of it. For instance, I use to be able to clean my entire apartment in a day. Now I'm lucky if I can mop the floor in just a day. So I just do one chore a day and if it's not on my list, I emotionally let go of it until I feel ready again. Been like this for a while now and it sucks but I feel I have to do it my way or else have a complete breakdown. You've been overwhelmed for quite some time. Perhaps we are going thru different things but mentally we seem to have some things in common. Glad you came here to vent because this is the place to come. Here, you are among friends who can console you, offer advice and just plain agree and let you get it all out. Rise up, girl! We can do this! And oh, I've had stinky bathrooms before too. Months ago I had projectile vomit to deal with and couldn't clean it up til after I checked hubby into the hospital. It happens but I wish it didn't.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
cassandra
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When all else fails run in circles, shout loudly

« Reply #2 on: October 06, 2016, 01:44:23 PM »



    :cuddle;


And love, and strength, and what the hell is that texting from his nurse about?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Michael Murphy
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« Reply #3 on: October 06, 2016, 06:56:16 PM »

It's amazing that you are still hanging on, what you are describing would try the patience of a saint.  First off you are being held hostage in your own house.  By noise restrictions.  As long as dishes are a problem switch to good paper plates, my wife is busy taking care of her father i use paper plates and a microwave and I can just through out the plates when I am done. I use one fork and knife and wash them when I am done.  You need help!!!!! Since I don't know what's available in Canada my only recommendation is speak to the social worker at his dialysis center, or if you are a church goer talk to your pastor.  Don't feel bad about how you are feeling it's probably just what anyone in you position would feel.  Last but not least talk to your husband you may not be alone in feeling strained.  A honest expression of how you both are feeling would clear the air.  Maybe between the both of you you can figure a way to handle the problems you mentioned.  I mean maybe doing the laundry and dishes may not bother his sleep. I hope things get better for you.
« Last Edit: October 07, 2016, 10:47:30 PM by Michael Murphy » Logged
LorinnPKD
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« Reply #4 on: October 06, 2016, 10:08:53 PM »

Michael Murphy is right: Disposable cutlery and paper plates have been a godsend for me in those times when the dishes just can't get done.
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justagirl2325
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« Reply #5 on: October 07, 2016, 07:16:46 AM »

Thanks everyone for the responses, it's amazing the feeling just from someone else understanding.  I talked to my mother and she offered to help if I want her too... haven't taken her up on it yet as I also spoke to my husband last night and we agreed that we are going to find and hire a cleaner to come once a week to help out. 

I love the idea of paper plates I'm going to do just that.  Now Primetimer if I could only find the energy (or desire) to do one thing each day :) 

He's done with the centre today so we are going to go back home and the nurse will not need to contact him as much. I find this part hard. I've known her since we were teenagers and it could be just a really friendly gesture on her part but when it gets combined with him telling me that she's always complaining about how unhappy she is in her marriage and that he thinks she has a crush on him it bothers me.  And well what do you say to her?  The other ladies in the centre are very professional, her not so much.  It's the kind of thing you shrug off when everything is fine but one more thing to push you over the edge when it's not.
« Last Edit: October 07, 2016, 07:19:13 AM by justagirl2325 » Logged
PrimeTimer
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« Reply #6 on: October 07, 2016, 10:19:49 AM »

The fact that you both made the decision to hire someone to help clean ought to bring enormous relief -help is on the horizon! As for Nurse Crush, I'd let your husband know. Maybe he doesn't realize just how she or the thought of it is affecting you.  :beer1; Cheers to some really good paper plates! Now who is going to take out the garbage? lol
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
kitkatz
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« Reply #7 on: December 03, 2016, 04:31:48 PM »

We have taken several measures to help us cope with life:
1. Paper plates and plastic silverware
2. Hired once a week housekeeper.
3. I have hired extra help to help me through Christmas cleaning and decorating.
4. I make sure to do one thing that makes me happy or I enjoy every day.
5. I used Amazon to purchase gifts this year.
6. I say no to requests from other people. Enough is on my plate.

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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
KatieV
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« Reply #8 on: December 09, 2016, 07:00:13 AM »

5. I used Amazon to purchase gifts this year.

Besides gifts, I've been buying most everything online except for food (hence why the fridge is empty!).  Needed a new mattress - ordered from Amazon; new dress shirts for my husband - Cyber Monday Sale on kohls.com!  Why brave the crazy rush of the mall when you can do it from the comfort of your dialysis recliner!
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
nursey66
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« Reply #9 on: December 09, 2016, 10:59:41 AM »

 :2thumbsup;
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Angiepkd
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« Reply #10 on: December 10, 2016, 08:19:30 PM »

So sorry you are going through all of this.  And the Holidays are surely adding to the stress.  The weekly cleaning should help a lot, because no one likes to look at a pile of dishes and unfolded laundry. Try to be easy on yourself, and let things go.  It's hard for people to understand unless they have been there. I still haven't finished shopping, and can't go to the mall or store until 6 weeks after my last velcade treatment.  The date for that is December 24th.  Looks like people are getting money this year  :rofl; I haven't decorated at all, and doubt I am going to.  Just too many other things going on.  Praying that we all have a better 2017.  2016 has pretty much stunk. Hang in there!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
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