Is it hard for you to treat your spouse like "normal"?

[Hephs-little-lady]

Thanks Kitkatz, it's good to know there are people out there who understand. 

Oh, and I really pray that your Christmas wish comes true. 

X

[lola]

When Otto get's sick i freak with all the what if's, when the kids bring home letter's about whoopping caugh going around the school i freak, it seems like i freak out alot but i get so worried about his health. He works that's all he has to do (ok i do expect thanks at night too sometimes.) but i take care of EVERYTHING else, i'm to worried he'll over do it and get sick faster. I have told him though after transplant and once he's up to it i'm taking a week off and meeting the IHD naughty girls in VEGAS!!!!!

[MyssAnne]

I'm the one that is on dialysis, but my fiancee is tough on me. He pampers me, and takes care of
me when I need it, but when I feel good, he expects me to be active! Which is fine with me,
I enjoy being active when I feel good! I do hate not being able to go and go as I used to.
We can't really go anywhere in public unless there is going to be seating, because I just cannot
walk as much or stand as much as I used to. I do miss that. We used to do festivals around town.
Not any more.

[twirl]

I have had a very bad day as I posted on another thread
so my husband sees me after dialysis and says I have more color so he expects me to feel better
he always assumes I feel better when I do not
I do not like to be told I feel better
I feel like sh-t
and our private life can get to be a problem at times
I do not think he understands how this disease can get you down and out physically and emotionally
I know I am not the same person
I know it better than anyone
I do love him but dealing with the side effects of this PKD is exhausting

[Wattle]

I have had a very bad day as I posted on another thread
so my husband sees me after dialysis and says I have more color so he expects me to feel better
he always assumes I feel better when I do not
I do not like to be told I feel better
I feel like sh-t
and our private life can get to be a problem at times
I do not think he understands how this disease can get you down and out physically and emotionally
I know I am not the same person
I know it better than anyone
I do love him but dealing with the side effects of this PKD is exhausting

Is your foot size an 8 Twirl?? Because I am walking in your shoes....   ohh how I hear you!   

[twirl]

YES
and I am so glad to think I am not being a bitch
but I have reasons to feel that way I do
my husband has not called me a bitch but I still feel like one
if I he thinks I look like I feel better it is that "time"
and now we do not have kids at home but one and she works and goes to class
so.......
I am telling you more than you want to know
sorry
but it feels damn good to know I am not alone
when is school starting again
and football season with all the long hours
  I really do care about him but "free" time on IHD is great

[G-Ma]

Yes, everything Twirl said.  I am in a long distance relationship, will be 5 years in April and he is here about 2-3 weeks every 3 months, he just left and I am tooo worn out from putting on my "I feel good" face when I really was so very tired.  Now of course I don't even want to clean my little house, just want to veg and pout because of course he goes back and lives his normal life and I am still tied to this.  Just not sure how much longer this will go on due to his expectations of me...wow finally admitted that....

[twirl]

thanks
I am not the only one
thanks a million times over

[paris]

I understand, too.  I think being the woman, we have taken care of everyone for so long and the men just want things to go on as they always have.  I hate being asked "are you feeling bad today?"   I feel I need to act like I am fine when I really want to cry and go to bed.   He means well, but I know he has to miss the way life use to be.  I miss it too!  And I know he doesn't know what to do with me some days.   I want to be treated "normal" for my "normal" at this point in my life.  Does that make sense??  I want people to not focus on the kidney stuff but remember my limitations --like walking faster than I can or thinking I can't do something.   It is complicated. If I can't really explain it, how can I expect anyone to understand?    Thanks for letting me ramble!

[G-Ma]

Exactly

[flip]

just keep 'em barefoot and pregnant 

[kitkatz]

just keep 'em barefoot and pregnant 

You deserve that!


Twirl, oh my God, girl, you and I must share lives.  My poor hubby wants me to feel better after dialysis. Sometimes I do, most of the time though, it sucks, and all I want to do is eat and sleep, or be left alone. So he has to deal with moody me most of the time.  Our poor guys, they worry about us because some how they love us still, no matter what we put them through.

[twirl]

just keep 'em barefoot and pregnant 

typical male response
and I thought Flip was a cut above

[flip]

how would I know?.....haven't had a spouse in almost 20 years

[kaci]

Help.

I'll try to explain this as well as I can. I'm feeling very taken advantage of. I know that sounds awful. I expect very little of DH (probably less than I should since he feels pretty good the majority of the time) mostly to take out the garbage and help out with DS so I can get things done. His family has been down for the weekend and I have cooked and cleaned and had my space invaded and in general worked my ass off so that he could spend time with them now he wants to go back to their hotel room and 'hangout'. 4 adults 3 small energetic boys in one small hotel room at near bedtime = recipe for disaster. I'm exhausted. I just want to sit on my own couch and relax. I sent him and stayed home. He's mad at me. No matter how much I do, how much my life revolves around him my efforts always fall short. Never enough. He always feels that he should have gotten in one more game, one more visit etc...I'm taking care of the house, a toddler, driving him back and forth to dialysis in the middle of the night (no easy feat with a small child), acting as the information clearing house and support system for the whole family and nobody is supporting ME! I'm feeling very over worked and under paid right now. I sympathize with DH being selfish and wanting to be 'pampered', I've been truly sick before and I understand it. But he's really taken it to a new level. I don't know how to sensitively discuss this with him. I'm afraid I've been doing a poor job of it to this point. I'm very hurt that he has put his own wants so far above my needs and I have a hard time talking to him about it without getting very emotional or starting to feel like maybe his wants are more important than me... I don't know. I'm very confused and having a hard time right now.

[monrein]

Yours is a very common situation for caregivers whose incredible contribution is sometimes overlooked as they are "healthy" so people tend to not understand that they're often carrying a double load physically and a quadruple load mentally.  Burnout sounds like what you're experiencing.  It doesn't sound awful at all to say how you feel.  You're overburdened and that's a fact.  You mustn't keep these feelings secret and let them turn into truly toxic deep-seated resentment.

You need to reserve time for a talk with DH.  Wait until you feel calm but don't feel that you have to be abnormally sensitive.  I'm sure he's not that fragile.  (I'm sometimes treated with kid gloves and it's all wrong cuz I'm actually very tough and resilient).  You can start by saying that you understand how crappy he feels often and how he wants to fit in all the things he wants to do in case the next opportunity is a long time coming BUT you need him to also be your partner and that sometimes means doing what you need to relieve the additional pressure on you.  I'd lay it right on the line with how you feel, trying hard as you can to stick to "I" statements, like "I feel like I worked my butt off all day, extra work on top of our regular crazy busy life, and I'm happy to do that but at the end of it all I need you to help me get bedtime done smoothly and have a little quiet for ME.  I don't want to spoil your fun but I'm bushed and I really needed you to help me here tonight.  I felt pissed at you and I felt like you didn't understand me at all this evening.  I hate feeling like this and I hate having to lay it this on you because I know things aren't a piece of cake for you but I have to feel like you can look after me a bit at times too, and this was definitely one of those times."
Obviously you'll choose you own words but focus on having him hear how you feel rather than telling him what he did wrong.

I really believe that caregivers have the roughest time of it quite often as your legs can get quite tired from the extra running around and walking on eggshells.

If this is way off base kaci just ignore it, accept a hug from me and I wish I could come over and clean up the kitchen for you.   

[boxman55]

Kaci, you are a saint. you need to try and talk this out before it goes beyond repair. he needs to understand your side as you do his. I feel for you and please try and talk it out. I will bet he will understand...Boxman

[del]

I'll help you clean up for her monrein!!!  Tell him exactly how you feel using the "I" statements like monrein said.  He needs to realize that even though he is the one who has kidney failure that you are dealing with kidney failure as well.  My hubby is on dialysis (has been for 11 years) and life still goes on!!!  He should be helping you get those kids into bed and letting you have some time just to sit and relax after a full day.  It is hard mentally on "us" . I am never sure how hubby is really feeling and I worry about him sometimes.  I also know that he is going to do his part with running the house etc!!!  I do most of the housework and he does the maintenance though!!  

Talk to him and tll him how you are feeling  

[kaci]

Thank you, guys. I was semi expecting to be told to buck-up so having my feeling validated is really helpful.

Monrein your post made me cry. That's exactly how I feel and when DH gets back from visiting I will try to discuss it with him. I have such a hard time discussing things. I cry VERY easily and once I start crying I can't really speak anymore. It's very frustrating. And then to top it off DH is a counselor by profession so I sometimes feel that he's treating me like a client not his wife, lol. But I'm going to give it my best.

[monrein]

Write it in a letter if you feel you'll cry too much Kaci.   If he makes you feel like a client, tell him you don't like it.  Tell him no jargon allowed.  My husband's a lawyer and I'm a former therapist and common phrases in our house are "Stop cross-examining me" and "Stop the social work crap, I'm mad".  Usually we end up laughing then pick up the quarrel.  You can out jargon him anyway with the "I feel like you're listening to me but I still don't feel heard". 

BTW  Social work, therapy, counseling jargon makes me want to run screaming into the night.  I try to just "let it go" but really feel more like punching something when I hear too much of it.

[jbeany]

Kaci, we spend enough time telling ourselves to "Buck Up" around here - we don't pass that message on to anyone else.  This is where we come to vent!

[Yvonne]

To Sarah who started this thread. By reading all these replies to your thread, I can't make up my mind wether my John is better off without having dailysis, I know we have no choice once the time comes. But it's a waiting game for him, having to have his blood, weight and urine check, waiting for results.  Every time he feels unwell I panic, he can't do much, feels tried all the time, out of breath.  No one has told us what to expect if he gets that ill if he will need dailysis. No one ever checks his stoma or his hernia's or if maybe the cancer has come back.
I worry about all these things and I know he does also. I think he often thinks he wished he had never had all the operations and just let nature take it's course. He was a very strong man and can't except feeling this way.
Now my feelings. I feel I have been cheated, I am 67 and John is 73 we have only been married for 12 years, been together for about 17 and in that time we have at last built up to having own our own house.  A time in life when we could start enjoying the carefree life, but then last year we were shot down in flames with John's sudden life threatening illness. I am full time carer now and at last I am excepting it, I do love him but I feel so sorry for him and just wish someone could wave a magic wand and give him back to me whole.

[lola]

 

[okarol]

Help.

I'm very confused and having a hard time right now.

Hi kaci - it's good you posted. You have a lot of responsibility and it's natural to feel overwhelmed. I hope you will take monreins advice and clear the air.

I cry easily - I always have. I get mad at myself because I feel that no one can really hear me when I am blubbering. My women friends say "I WISH I could cry - it's a release of emotions that is healthy!" They also tell me to keep going, keep sharing - and I think they are right.

My husband went through a pain clinic years ago when he first became disabled and the program had a component for the family too. They taught me that I need to have expectations of my husband, that he could do more than I was allowing - and it took awhile but I began to put some of the responsibility back on him, even though he was in pain and was struggling. I stopped doing everything for our family (we had 4 kids) I called him my "first born" because I felt like the only parent. He resented it at first, but became more involved in his own care. It's been a tough experience, and we don't always see eye to eye, but for the most part he's doing the best he can.

Sending you hugs and best wishes! 

[petey]

You mean Marvin's not "normal"?  OMG, why didn't someone tell me this before now?      We've lived like this for so long (almost 14 years now), that I thought this kind of life WAS normal.

Seriously, though, I have been accused (by others -- not my Marvin) of treating him like a baby.  I want to do everything for him.  I don't want him to carry a bag of groceries.  I don't want him to cut the grass.  I want to steady his arm when he walks down the steps.  I want to fix his plate at supper.  I want to put his shoes and socks on for him.  I watch his EVERY move to see if he needs my help.  I take my cues from him.  If he starts to pick up something, I reach for it.  If he doesn't say anything, I get it, but...if he says, "No, I got it," I back off and let him take it.  If he wants to cut the grass (which I really, really don't want to do), I'll say, "Why don't you let me do it?"  If he says okay, I cut the grass.  If he says, "I can do it," I back off and let him do it.

I have found that his "normal" varies from time to time.  When he first went on dialysis, I started doing everything for him -- well, just about everything.  When he got his transplant, he became "Mr. Independent" and wanted to do everything for himself, so I had to back off and let him do all he wanted or all he could do.  When he went back on dialysis, I started babying him more.  When he went on home hemo, he wanted to do more (and could do more). 

Basically now, I just follow his lead.  He sets the pace and sets the agenda of what he can and cannot do, and I just follow him and pick up the slack where he can't.  I know I'm a "smothering" type person.  Luckily for both of us, this doesn't bother Marvin.  He lets me know how much he can do.   Marvin WANTS to do a whole lot more than he can physically do, and he struggles with this limitation.  Other than the physically stuff, however, I think we are a pretty "normal" couple -- if there is a "normal."