Ever feel like you can't complain?

[skyedogrocks]

I love my husband immensely and I know he is going through so much every day just dealing with this disease.  The man doesn't complain or say "why me", he doesn't use this disease as a crutch.  He's just a really great guy. 

I'm tired though.  I'm tired of having to be positive all the time, tired of being so patient.  I'm tired of being a nurse.  I'm tired of being the secretary, making all his appointments.  I'm tired of always nagging him to take his binders after he eats, tired of reminding him to test his sugars.  I feel like his mother most days.  I'm tired of being the maid and I'm tired of being the chef.  I hate needles and blood, but I have to deal with it 5 nights a week.  I have to deal with the attitude when the needles don't go in right away.  I'm always calm and patient when he is freaking out  Yet, when I am slowly freaking out when there is alarm, he freaks out with me, which makes it oh so worse.

And, I feel guilty for complaining of being tired.  How can I complain when I don't have this disease?  I'm not the one going through this disease hell.  I can eat whatever I want, I can drink whatever I want.....so how fair is it for me to complain?  But I am complaining.  I just I can't deal with it some days.  I have a great support network, but sometimes they just don't understand.  I wanted to go for my haircut tonight, but I have to postpone it because the dialysis session didn't go as planned last night, so we couldn't do it.  But again, I feel guilty for complaining about this.

How do the caregivers cope with this?  Like I said at the beginning, I love my husband so much, he is my world and I couldn't imagine a life without him.

[Adam_W]

I think you have every right to be upset and frustrated. I know that being a caregiver to a dialysis patient can be very stressful. I sometimes feel very bad for my caregivers and what my disease puts them through. Sometimes when I get really upset, I tend to take it out on them. I never mean to, but when I'm upset, I don't think logically. I'm not really concerned anymore about handling my dialysis, especially since I'm on NxStage now, but my parents are the ones who I'm concerned about. These last four and a half months have been really hard for them, especially since my grandmother is in stage four and she's about six months to a year from starting her dialysis. Don't ever feel like you can't be upset and vent your frustrations. I'll keep you and your husband in my prayers. 

Adam

[Kathleen]

I love my husband so much and I know he is going through so much every day just dealing with this disease.  The man doesn't complain or say "why me", he doesn't use this disease as a crutch.  He's just a really great guy. 

I'm tired though.  I'm tired of having to be positive all the time, tired of being so patient.  I'm tired of being a nurse.  I'm tired of being the secretary, making all his appointments.  I'm tired of always nagging him to take his binders after he eats, tired of reminding him to take his sugars.  I feel like his mother most days.  I'm tired of being the maid and I'm tired of being the chef.  I hate needles and blood, but I have to deal with it 5 nights a week.  I have to deal with the attitude when the needles don't go in right away.  I'm always calm and patient when he is freaking out  Yet, when I am slowly freaking out when there is alarm, he freaks out with me, which makes it oh so worse.

And, I feel guilty for complaining of being tired.  How can I complain when I don't have this disease?  I'm not the one going through this disease hell.  I can eat whatever I want, I can drink whatever I want.....so how fair is it for me to complain?  But I am complaining.  I just I can't deal with it some days.  I have a great support network, but sometimes they just don't understand.  I wanted to go for my haircut tonight, but I have to postpone it because the dialysis session didn't go as planned last night, so we couldn't do it.  But again, I feel guilty for complaining about this.

How do the caregivers cope with this?  Like I said at the beginning, I love my husband so much, he is my world and I couldn't imagine a life without him.

I've never been good at giving advice so, I hope this helps if not just skip over this....

It takes a special person to be a caregiver 24/7 365 days a year. It can wear a person down. You gotta find a way to take a break from all of it. And I just bet you think to yourself, ( I do)  my hubby doesn't get a break from his disease, why should I?  I can tell ya why. If you don't take care of YOU, you won't be of any help to your hubby. and he needs you and loves you... Call and get another appointment for your hair, cuz us girls knows how much that makes us feel soooooooo much better.. And damn we look soooo hot for our hubby...

How do I cope? Well... I let hubby take care of calling and making his appointments,  as for cleaning the house? Yep, my house isn't as clean as it use to be, but so what.  Cooking, now thats my outlet I do enjoy that. can't help ya there. Now this is coming from someone that had maids and cooks.....lol...You must never forget that your his Wife, not his nurse, mother, even tho you might feel that you are.  Soo find a way to take a break, cus it sounds like you need to, don't feel bad or guilty for doing so...  It will make you feel so much better... Give it a try...

Heres a tip..lol.. Put a notepad and pen beside his chair. so he will be able to write down his appointments or call in his meds. Thats what works for me..lol..  And if ya don't have small kids running around the house.. Put meds in arm reach along with his remote...

Now if only I could get hubby to change the toilet paper roll.. hmmmm

 I hope this helps in some way. 

[Sara]

I agree with everything Kathleen said.  We don't have the same experience/difficulties as the ones we care for, but we have our own unique trials and tribulations to go through.  Of course it's all worth it to be able to help Joe a little bit, but damn is it wearing on a person!  Definitely come here and vent as needed.   

[skyedogrocks]

I've never been good at giving advice so, I hope this helps if not just skip over this....

It takes a special person to be a caregiver 24/7 365 days a year. It can wear a person down. You gotta find a way to take a break from all of it. And I just bet you think to yourself, ( I do)  my hubby doesn't get a break from his disease, why should I?  I can tell ya why. If you don't take care of YOU, you won't be of any help to your hubby. and he needs you and loves you... Call and get another appointment for your hair, cuz us girls knows how much that makes us feel soooooooo much better.. And damn we look soooo hot for our hubby...

How do I cope? Well... I let hubby take care of calling and making his appointments,  as for cleaning the house? Yep, my house isn't as clean as it use to be, but so what.  Cooking, now thats my outlet I do enjoy that. can't help ya there. Now this is coming from someone that had maids and cooks.....lol...You must never forget that your his Wife, not his nurse, mother, even tho you might feel that you are.  Soo find a way to take a break, cus it sounds like you need to, don't feel bad or guilty for doing so...  It will make you feel so much better... Give it a try...

Heres a tip..lol.. Put a notepad and pen beside his chair. so he will be able to write down his appointments or call in his meds. Thats what works for me..lol..  And if ya don't have small kids running around the house.. Put meds in arm reach along with his remote...

Now if only I could get hubby to change the toilet paper roll.. hmmmm

 I hope this helps in some way. 

Thanks Kathleen - you gave great advice.

I used to have time to myself when Rob did dialysis at the center, it's only since he has been home that I feel I don't have time to myself anymore.  I changed hairdresser appt. to Thursday.  On Friday I am going to get myself a pedicure during lunch, I totally need that.

I have tossed around the idea of getting a housecleaner maybe once a month or even twice; I just can't get to everything like I used to.  I know that will help me out immensely.

He takes his meds fine, it's his stupid binders that he is always forgetting.  I have been putting them at the dinner table these days.  It looks oh so fashionable 

It's nice though to know that you aren't the only one who is ready to lose their mind  , I was having a selfish morning.

Thanks!

[Kathleen]

skyedogrocks you're not being selfish at all. Hubby and I have a running joke about takings his meds.. If ya don't take em, I will insert em... run to get rubber gloves... He gets the point.

You're gonna feel like a new woman, getting you hair done and a pedicure. 



 

[skyedogrocks]

Getting my hair done every 6 weeks is my saving grace!!  Can't let those grays show! 

[lola]

i go get a pedicure every two weeks that's my way to leave everything behind for awhile i need the mental break, i know I'm not the pt but i do EVERYTHING but be the pt and sometimes it's a little overwhelming. You have found the perfect place to come and vent....

[goofynina]

skyedogrocks you're not being selfish at all. Hubby and I have a running joke about takings his meds.. If ya don't take em, I will insert em... run to get rubber gloves... He gets the point.

You're gonna feel like a new woman, getting you hair done and a pedicure. 
 

LMFFAO  ...That is too funny  (sorry, i got a visual) 

[Kathleen]

skyedogrocks you're not being selfish at all. Hubby and I have a running joke about takings his meds.. If ya don't take em, I will insert em... run to get rubber gloves... He gets the point.

You're gonna feel like a new woman, getting your hair done and a pedicure. 
 

LMFFAO  ...That is too funny  (sorry, i got a visual) 

Now thats a true story... The look on his  face was priceless... If I ask him, if he has taken his meds, if he hadn't he runs like hell to get em.... I have a big box of those rubber gloves and I'm not afraid to use em...

[kitkatz]

You know, I have discovered there is only so much I can do for my hubby and for me. In spite of what you see people say here, I am not a super hero, just a woman who has learned a few thing throughout this life

Be good to yourself.
Let the hubby remember to be good to himself.
Get the rubber gloves out if needed.
Carry a big stick and if needed use it.

[Lori1851]

Hello,
Boy do you sound like me. Its called Stress. I am a caregiver to my son Dustin. I fill his pill containers remind him to take his meds morning, noon and night. I get dumped on also when he is not feeling good. Like yday he had a terrible migrane and vomiting. He was scheduled for dialysis and was so sick he veirly made it home. So when I talked to the nurse at dialysis she went ahead and scheduled him to make up his day. Well,,,,,,,,,the brat would not go until his next scheduled dialysis which is tmrw.
We have tried explaining to him that he still needed to go get dialyized. Kidneys do alot of other work besides urinating. What he doesn't seem to understand when he does not go that does no look good to the transplant Dr.s. I as a mom am at my wits end., Maybe we can vent to each other .
  <,,,,,,,,,,,,,this is me hehehhe
Lori Indiana Dustin fsgs /esrd

[skyedogrocks]

I'm feeling much better today....I have just been so stressed lately.  On top of all this, my job is being eliminated  due to a major reorganization in my company.  So,  I have 3 months to find a new job within that company.  I work from home, have a flexible schedule.  It's not easy finding that at all!  Plus, we are in the process of adoption too.  So, no wonder I am stressed!!! 

I did go into the office today and it was nice being around people and not my dogs all day (love my dogs but they drive me nuts sometimes  ).  I also have a 2nd interview scheduled for a job that I would really like at my company, I know I would be perfect for it.  So, this has definitely helped ease stress.

It's nice coming here to vent and not made to feel like I am a bad person.

Thanks guys 

Lori - Sorry to hear about your stress.  How old is your son?  It must be so hard to do this for your son and for him to be so stubborn.  I'm sensing a male pattern here!   .  Just know that you aren't alone.  Coming here to vent and some of  doesn't help either! 

[andrea_c]

I so understand the stress issue. See my posts.  We had a run to the hospital this weekend.  They kept him until Tuesday with other issues involving his heart. Right now i am drained and have a perpetual stomach ache from stress. I want to tell him that I need to get away by myself for a weekend, but he will not take that well.  This sounds  hard but I wanted onee more day in the house with out him.  I dont wish him in thehospital at all, but I could have used one more day by myself. Now that sounds awful! 

[skyedogrocks]

Andrea - I am so sorry you are so stressed.  It's just so hard on them and on us.  Maybe a weekend away with the girls or your parents might be a good idea.  He may be upset, but I would think a more relaxed you is better than a stressed you. 

Have you looked into a therapist to talk to?  I have been looking into one myself, I know it will help me.  We were told yesterday that they are setting up a support group for us Nx Stagers, I am really looking forward to that!

Big hugs  I hope it gets better.

[Kathleen]

OK... I'm pissed the bill collectors are on our ass,  haven't heard if hubby will be able to do the cycler!!!!!!!!!!!!! WTF??

He acts like I don't care...............

[glitter]

the bill collectors are pestering us too- but you know what? Thay can't EAT you....and if you don't have it, you don't have it.

[tweetykiss]

Skye and Kathleen,

I feel for both of you.....my husband is not on dialysis yet but it is a lot of work just to keep him off since if he ever needs it, it will be even more stress that will be hard on me...I have to fix his pill box every morning, get groceries for him and read labels since he has to really watch the salts and sodium and then cooking two separate meals (one for me and one for him)......I also have been having to change appointments of mine because of his appointments at the hospital.....they keep saying he has to make his appointments to stay off dialysis.......I never have time for me other than on here and I need this board more than anything right now.....good thing I spent the other day just paying bills or they would never get paid..........I try not to complain but he got to me yesterday when he said he didn't want that bronchscopy and finally I let him have it saying that I am doing everything to keep him well and he needs to be compliant....am I asking too much when I tell him to be compliant.....

I was in deep depression for two weeks because I was on pins and needles wondering if he needs dialysis.....I think some of you remember me freaking out last weekend when his levels were up......

Now I have no problem doing everything around the house and keeping him well but he has to comply medically....is that too much to ask?

[Lori1851]

Hi Sky,
My son is 21. Dialysis called today cause his hearbeat shot up to 150. They made him stay their until it went down. He seems to be ok.
As for your job my hubby lost his job will be 2yrs ago this July. Went in earlt to relieve another foreman and was called upstairs. They basically said we are downsizing and starting with YOU!!!! Thank God he had severance pay and 22yrs of us saving and unemployment. Hope jobs are more available their than here in Indiana. They all use temp services and don't pay squat!!! Thank God we got Dustin on SSI and Disability! Hubby is still LOOKING!!!!! and its rough!!!! One thing I work for the school system and I work parttime at our local CVS. I'll say a prayer you find something soon!!!
Lori/ mom to Dustin 21 ESRF due to FSGS