I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: andrea_c on February 19, 2007, 04:58:42 AM
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My husband and I got married 9 years ago after knowing each other and dating for at least 15 years prior. When we got married he was battling with diabetes and high blood pressure and I knew life would be different intimately for us. Well I loved him and wanted the American dream so thinking we could work on this together with humor, I continued on. Well then he got sick and after much nagging from me he went to a new kidney doctor (let me add that he was hiding the severity of his med condition from me) and low and behold ....dialysis. I felt like a fool in front of the doctor, I knew NOTHING of his condition! I went into shock. He went in to depression and denial. He had to leave his job as a police officer (he was slowly pushed out). This broke his heart. In the mean time here I am realizing that we will remain childless, trying to hold on to my sanity, trying to deal with some infidelity issues at the start of our marriage, dealing with his anger, his illness, my job stress, home issues, feeling not wanted, feeling horny, feeling like a nag, like his mother, feeling frustrated, feeling trapped, felling like I should not be feeling some of these frustrations. If I chose to go some where for my job or with my girl firends he clings and makes life hard. Most days i don't want to hear about kidneys and dialysis and fistulas and medication or see him drink too much fluids, eat no vegetables, vomit, diarrhea, all , everything associated. Most days i just want to lay in bed and cry. :'( :'( :'( :'( :'( :'( :'( :'( and you know what he says, what reasons do you have to be depressed, this is happening to me, not you!
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I do not know what to tell you. I am the patient on dialysis in our household. It is a long tiring process. Yes, it will take up his entire world if he lets it. If you read the posts on the site you will find we all have our problems. That is why we are here, for support. Consider yourself supported.
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Marriage is in sickness and in health. I don't know what else to say as I am the one on dialysis. All I can figure is you didn't think it would be like this and you feel unprepared and in shock. It sounds like you really need someone to talk to and don't feel like you can put this on him as he feels he has it worse off than you since he is the one on dialysis. Have you sought counselling? You really can't just hold this in. Depression is anger held in. It is unhealthy but you can't keep it in. You must let it out. There is a lot of anger inside where you feel this just isn't fair. Am I right? It is just the impression I got.
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and you know what he says, what reasons do you have to be depressed, this is happening to me, not you!
Seems to me that if you are married and truly committed to your spouse, whatever happens to that spouse is happening to you, too, although seen through a different filter. You don't have all his problems, but then, he doesn't have all your problems, either! I'm still pre-dialysis (thank you, God!), but in other instances, I have found it is easier to be the sick person rather than the one trying to take care of me! Somehow, being sick frees me from the other worries I would otherwise have, because they just don't matter so much anymore, and my attitude becomes much more laid back!
I hope you can find a sympathetic outlet soon - you're carrying too much stress, and you deserve better!
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Hi-I'm a caregiver too, to my husband-we had two months warning that my husband was going to be on dialysis, (read my intro)
I understand what your feeling-it does suck to have your lives totally changed in a moment that you would never be prepared for.
Have you spoke to your DR. about the way you feel? There are things that can help your depression...I have found that educating myself to my husbands condition is therapeutic also...knowledge is power and it helps me to not feel inadequate to deal with issues if I know more...this place is a great place to start.
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Wow, this is heavy. Dialysis is a huge change, but its up to your husband to accept it and go on. Being diabetic, I can relate to some of what hes gone through, but never have I tried to drag my wife down with my kidneys failing as it wasn't anyones fault but my own that I am where I am. You have to make a decision to either stay with him, or split, at least have some time apart to learn to cope with the cards dealt. I don't think its doing either of you any good staying together and feeling the way you do. What ever you decide, I hope and pray things turn out for the best, what ever that may be.
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thank you all for your responses and encouragement. I was lucky to find this site and already after reading some posts feel a bit better. Counselling for me has always been an idea in the back of my head, I just don't really know where to start. It seems we just concentrate on his health issues.
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Wow, can I relate! :cuddle; Just because he has kidney failure, doesn't mean you guys can't get pregnant, unless there are some other issues (which I have experience with too. :( ) Feel free to PM me if you want to talk.
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:'( This is happening to you as well as him. He should have told you. This will also test how strong your love for him is. Knowing some of his conditions before marriage, ask your self: How much do you love him....only you know the answer. Don't get me wrong, I'm surely not judging you. This can put a strain on a marriage. You have to make up your mind, are you in it for the long haul?
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thank you all for your responses and encouragement. I was lucky to find this site and already after reading some posts feel a bit better. Counselling for me has always been an idea in the back of my head, I just don't really know where to start. It seems we just concentrate on his health issues.
You should check out some counselling because you can't just put his health issues as the only important issues! This isn't just him in this relationship but BOTH of you! And if your needs are not getting met but you are only tending to HIS needs then you will end up resentful and feeling used and abused! Your needs matter TOO! You need someone to talk to about this to help sort out everything in your head so that you have a better idea of what exactly your needs are and which ones need to be met NOW!
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thank you all for your responses and encouragement. I was lucky to find this site and already after reading some posts feel a bit better. Counselling for me has always been an idea in the back of my head, I just don't really know where to start. It seems we just concentrate on his health issues.
His Nephrologist is a good place to start. They deal with this all the time and should have some counselors to point you towears. Living with a chronically ill patient (and that is what your husband is) is hard. Get help before it is too late.
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Hi Andrea,
I can definitely understand your sadness and depression from the little you have said about your and your husband's condition.
I think one thing you need to remember and perhaps to focus on is that YOUR emotional health and well being is as much an issue as hubby's kidney failure, dialysis and anything else. You are also trying to cope with a heck of a lot as a wife to your husband along with your own pain about various things...
I think counselling would be a great idea for you as much as you both in your marriage.
Luckily this is a place to vent and hopefully find some kind of empathy.
*hugs*
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Sometimes you need to take a break. Do something just for you or just take a little time just for you to sort things out.
There has been a lot of adversity in a lot of members life's here on IHD. You are not alone. Draw strength from those members anyway you can.
Wish I could do or say more to help you through Andrea but do know that like most things, things do get better.
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Andrea,
I too am a caregiver. I admit there are days when I don't feel I can go on. I resent never being the one who is taken care of. There are days when I am angry at my husband for not doing what was necessary years ago with regard to his diabetes control. But I try to keep balance in my life. I work fulltime and volunteer. I have my own interests and hobbies. I admit when I need a break and I take it. Even if he doesn't like it, I hire some help and go away for a few days. You have to take care of you or you will not be able face the stress of each day. Take time for yourself, exercise, go out with friends, do some things that make you happy. I will be thinking about you.
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Your responses touch my heart so much you have no idea. Yes, I do have to get away. No it's hard saying it because then he thinks I am leaving (even if he comes up with various excuses why I should not go) I heed your warnings about counselling and doing for myself as I am already starting to feel resentful, and guilty for feeling resentful. I thought I could at least depend on my mother for encouragement but she has been dealing with my father as a stroke victim for many years, so I guess she is in a suck it up and deal with it mode. I find myself getting angry at her as well. Who knows why?!! I feel like a basket case most days. I just pray these days though am not sure what I am praying for. I just ask God to hear my heart and interpret it correctly ( ???) Thanks again for getting me through a difficult yesterday.
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One day at a time baby! It's the only way sometimes. :grouphug; :grouphug; :grouphug;
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Hi Andrea, If God brought you to it, He would lead you through it :) I wish you Godspeed :cuddle;
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Sometime though, it feels like God brings it to you, then the waves of life take over and cascade over your head in ever expanding waves of difficulty! I have been there, done that! Remember to take care of you! HE is going to need you to be around for him to draw strength from. That is why you feel tired and worn because he is drawing strength from you. KNow you are stornger than the waves and you can stand and do it.
"When you are walking through hell keep on walking...."
Some country song I know
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One day at a time baby! It's the only way sometimes. :grouphug; :grouphug; :grouphug;
Actually, sometimes half an hour at a time is the best I can do - but it works! ;)
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Andrea first :cuddle; I to am the caregiver we have been together since we were 18 and i truly can't imagine my life without him, but you have to take care of you I got really sick with strep from sleeping at the hospital for a week with him and once he was out running him to dialysis, Dr's appt lab appt ..... also have 3 small children and a dog sometimes I've learned it's o.k. to say i can't do it all and i need a break.... I'm so glad i found IHD i wish i had found it sooner these people are amazing.....
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Andrea, I know how you feel. although my exwife never got involved in any thing dialysis related. I know that is why she left me. I won't allow anyone near me now. I do this all by myself. Sure i cry at night wishing i had some one to hold onto. But then i remember they wouldn't stay with me anyway. My heart goes out to all you caregivers. I admire the ones that stay and understand the ones that don't.
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I can totally relate to this. My husband is a diabetic and I knew all about it when we got married. I have went through the emotions of blaming him for where he is now (he didn't take care of his diabetes for about 5 years). I would be upset if he didn't tell you about his severity, but love can overcome that. He doesn't want to be where he is, but he is. It's a reality and all the both of you can do is work on keeping his diabetes in check and him feeling better.
It does get overwhelming when you are the caregiver, I know I get overwhelmed now and then. I feel like I am the financial person, housecleaner, dietician and nurse some days. Every now and then it builds up and I just vent out to him how I am feeling. Then I feel bad because he is going through this hell in his body and mind. We talk alot though, that has helped us get through. We also laugh alot and make jokes about his disease (like how he can sit through a NFL football game without having to go to the bathroom! :2thumbsup;).
I agree with the others and talk to someone about this. I have a great support network of my sisters and friends. I vent, cry and laugh with them and they just listen to me and let me do this. Any people around you that you can do this with?
Also, don't feel that you can't have children. Yeah, it's harder for a diabetic to have them. We have issues (me more) and Rob also doesn't want to give this to our kids. So, we are going through adoption. We have chosen to go through the state. There are so many wonderful children out there who need love, a safe place and just to be a kid.
It has been such a help to come here and know that I am not alone. I only wish that I could find a support group around my area, I think that would be really beneficial to us.
Big hugs :grouphug; and hope things get better for the 2 of you!
Larraine
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Larraine, the more I read your posts, the more it seems we have in common. We are also dealing with fertility problems (both of us) and have decided to adopt. We took the classes through the state but still have to get our homestudy. Things have been put on hold for a little while since Joe just stopped work and we want to get settled with that but we'll get there eventually. Good luck to you! :cuddle;
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Although I do not have a care partner caregiver; however, I respect those are here going through these moments. I am grateful to have my family around me during those tough times while on dialysis.
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Hey Sara,
You know, I was thinking the same thing when I read your posts. Oh the joys of being a wife/caregiver to a diabetic on dialysis ;). I also feel like a nag at times, but know that if I don't, that stubborn husband of mine won't do it! It is definitely a challenge, especially with the diet! Sorry about the infertility stuff, that part really sucks, I know!
Our social worker is really great and the homestudy wasn't that bad. She just couldn't believe that Rob was sick because he doesn't look sick (like so many of you here going through dialysis!).
PM me any time you like. Have you guys thought of doing the Nx Stage?
Larraine
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Larraine,
I'm trying to talk him into at least learning more about the NxStage. He's really not doing well on in-center dialysis, so I'm hoping that daily dialysis, and using the buttonhole technique, will be better for him.
Is Rob still working right now? If not, what did your social worker say/think of that?
Sara
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Rob is still working. He felt like the in-center dialysis was a part time job for him. He definitely needs the work outlet, it helps keep him sane.
Rob always did well with dialysis, he never felt sick afterwards. I know this is different for every person. Try going on nxstage.com to learn more about it. Rob is doing very well with this. He is feeling better, since he can be a bit more liberal with fluids and the less likely hood of cramping. Don't get me wrong, it takes a while to get used to. For the first week, I felt like this was our whole life....working, eating dinner, dialysis and sleeping. This is our second week and I am feeling better about it.
Hopefully Joe will look into it!
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My dad hid the severity of his kidney disease as well....Add insult to injury and he is diabetic as well.
He had to go to the ER 2 yrs ago for low blood sugar and that is when we found out it would be dialysis for the rest of his life-HUGSS
Let him know you love him no matter what-I can see how easy my father would have retreated into himself the days after coming home from a five day stay in the ICU but we did not let him
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Never truer words spoken, "in sickness and in health". Andrea, it is not easy and it may not be what you thought you signed up for, but imagine how scared he must have been to not to tell you. You love him. Diabetes & kidney disease suck. Depressions sucks. But all of these things can be managed. If your relationship can survive these initial shocks, then you can survive almost anything. Think of it like seasoning a frying pan, once it is well seasoned, it is better than teflon - nothing sticks to it.
Give yourself some time - now is not the time for rash decisions, you can have a life that is not ruled by disease. Just don't expect it to happen overnight. Finding your pathway is a slow process - especially when you are walking down that path hand in hand. The enormity of today could easily be a survival story for the future.
Meltdowns are great, and highly recommended - that is why we have the Rant icon. IHD has helped to give me back my sanity in the 10 months that I've been reading the boards, and I hope that it can help you. We're rooting for you.
Best,
Anna
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Never truer words spoken, "in sickness and in health". Andrea, it is not easy and it may not be what you thought you signed up for, but imagine how scared he must have been to not to tell you. You love him. Diabetes & kidney disease suck. Depressions sucks. But all of these things can be managed. If your relationship can survive these initial shocks, then you can survive almost anything. Think of it like seasoning a frying pan, once it is well seasoned, it is better than teflon - nothing sticks to it.
Give yourself some time - now is not the time for rash decisions, you can have a life that is not ruled by disease. Just don't expect it to happen overnight. Finding your pathway is a slow process - especially when you are walking down that path hand in hand. The enormity of today could easily be a survival story for the future.
Meltdowns are great, and highly recommended - that is why we have the Rant icon. IHD has helped to give me back my sanity in the 10 months that I've been reading the boards, and I hope that it can help you. We're rooting for you.
Best,
Anna
Anna , Love the analogy about the Teflon Frying Pan. Great way of summing up relationships and the trials and tribulations we must go through, but hey once we are through them we will SURVIVE !
Take Care all you caregivers we love u heaps
Tamara xxx ooo
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Thanks Tamara!
I was having a post dialysis friday night relationship "Moment" when I wrote that post. Something about Andrea's situation really hit home for me. That is what I love about IHD. We all have so much in common - even when we don't.
Best,
Anna