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

[cherpep]

Kaci,

Caregivers are wonderful.  We patients need you, respect you, and are eternally grateful for you. 

It's OK to let DH know how you feel.  You both need to trust each other enough to know that the other is going to be open and honest about how they feel.  DH with his health problems, and you with your exhaustion, stress, and worry.  Only by being open and honest can you trust each other.  He will probably appreciate the talk.  Maybe not at first, LOL, but eventually.  Good luck to you. 

[pelagia]

Kaci, lots of great advice here already.

I found that my husband became more self-centered as his illness got worse.  I assumed he was withdrawing emotionally to protect himself from the realities of being ill.  Wish I had found IHD during those days as we ended up having some pretty rough times. 

When I look back, I wish I had been a little more self-focused because I am the primary wage-earner and the care-giver and I ended up at a pretty low place.  As a care-giver, you have to try to stay mentally and physically healthy.  Rest when you can, and rant here when you need to.

 

[monrein]

Self-centered is a good way of putting it really.  I often say that when I get home I feel like folding over on myself, like folding a piece of paper into two, then four, then six.  Even returning phone calls from friends can feel like an imposition.   I often feel really sorry for my husband and wish I could send him away on a nice restful vacation.  It was much more difficult for him however the first time we went through this because we were only 26 and 32 and it felt as though our life had been hijacked.   He felt he couldn't tell me how robbed he felt because he thought it was harder for me than him but his silence was much more painful for me than any amount of total honest ranting on his part could ever have been.

[Sara]

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.

Hi John's wife (sorry don't see your name anywhere),

I understand the cheated feeling.  I'm not sure if you noticed in my signature (I think it's in my sig - I'll have to check) that Joe actually died 15 months ago.  I'm now 27, he was 37.  I was cheated out of children, a husband, a normal marriage, etc.  So I definitely sympathize with your feelings.  I also understand the constant worry and anxiety that you are feeling.  All I can advise is to really cherish each day.  There are SO MANY things I regret - petty fights, not being more supportive, etc., stuff that's normal in a marriage but I still regret it.  When you start feeling angry and resentful (IF you do, it's normal) try to push through it.  It really helped me to come here and be able to educate myself and vent to people who understand.  Looking back now, I really wish I was more understanding about a lot of things.  Joe was a "typical guy" (sorry guys, for the stereotyping) and was a big baby whenever he didn't feel well.  If it was me sick, I'd have to work anyway, or clean, or whatever, but he always managed to milk it, LOL.  I got angry about that a lot.  I "knew" in my head that dialysis causes incredible fatigue, but sometimes I would forget that through my frustrations.

I don't know if any of this helps you or not.  My brain's kinda foggy so I might not be making sense.  If I can help at all, please feel free to send me a PM.

Take care.

[petey]

I'll chime in on the "cheated" feeling, too.  Yes, I feel cheated.  I was 32 and Marvin was 39 when he first got sick with ESRD and went on dialysis.  This has not been an easy road for either of us.  To me, however, Marvin has been cheated out of much more (though he insists that I've been the most cheated out of a "normal" life).

Sara's advice is right on the money...don't take anything for granted and count each day you spend with your spouse as special.  In the past 14 years, Marvin and I have not fought or had a cross word (we've disagreed, as all couples do, but we have disagreed "agreeably" and there's the difference).  We have also tried to find something to laugh about in every situation (and sometimes that's hard -- very, very hard -- to do).  When Marvin got sick in 1995, I decided right then and there that I had to be the kind of wife who would have no regrets.  I have been many things to many people -- daughter, sister, friend, aunt, teacher.  I have not always been the BEST daughter, sister, friend, aunt, or teacher that I could have been all of the time.  However, having such a sick husband has made me realize that being a wife is the most important relationship I'll ever be a part of (and, this is the ONLY marriage I'll ever be a part of -- I'm sure of that).  I try to live every day so that when it's all over I can say, "I have no regrets as a wife.  I did the best I could do all of the time."  So far, I have no regrets, and I'm trying to keep it that way.

Does Marvin "milk" it when he's sick?  Yep, he sure does (as do most men I know).  But I don't let that anger me.  I just chalk it up to, "Well, he can't help it.  He's a man!"   

Cheated?  Yes ... but also, blessed -- very, very, very blessed.  Being Marvin's wife has been the most satisfying, rewarding, important, meaningful thing I could have done with my life.  As long as I feel more "blessed" than "cheated," then I think I'm okay.

[willieandwinnie]

I'll chime in on the "cheated" feeling, too.  Yes, I feel cheated.  I was 32 and Marvin was 39 when he first got sick with ESRD and went on dialysis.  This has not been an easy road for either of us.  To me, however, Marvin has been cheated out of much more (though he insists that I've been the most cheated out of a "normal" life).

Sara's advice is right on the money...don't take anything for granted and count each day you spend with your spouse as special.  In the past 14 years, Marvin and I have not fought or had a cross word (we've disagreed, as all couples do, but we have disagreed "agreeably" and there's the difference).  We have also tried to find something to laugh about in every situation (and sometimes that's hard -- very, very hard -- to do).  When Marvin got sick in 1995, I decided right then and there that I had to be the kind of wife who would have no regrets.  I have been many things to many people -- daughter, sister, friend, aunt, teacher.  I have not always been the BEST daughter, sister, friend, aunt, or teacher that I could have been all of the time.  However, having such a sick husband has made me realize that being a wife is the most important relationship I'll ever be a part of (and, this is the ONLY marriage I'll ever be a part of -- I'm sure of that).  I try to live every day so that when it's all over I can say, "I have no regrets as a wife.  I did the best I could do all of the time."  So far, I have no regrets, and I'm trying to keep it that way.

Does Marvin "milk" it when he's sick?  Yep, he sure does (as do most men I know).  But I don't let that anger me.  I just chalk it up to, "Well, he can't help it.  He's a man!"   

Cheated?  Yes ... but also, blessed -- very, very, very blessed.  Being Marvin's wife has been the most satisfying, rewarding, important, meaningful thing I could have done with my life.  As long as I feel more "blessed" than "cheated," then I think I'm okay.

Who could say it any better.