How caregivers express themselves

[Sara]

Why does anyone need to PM Epoman to tell him that they were offended?  Can't we talk things through without running to "Dad"?  I am not saying I agree or disagree with what Jeff said, but he said it in the caregiver/spouse section, he was trying to express his feelings as best he could, which can be difficult not to come across as offensive on the internet.  Just my  but there may be better ways to react here.

[Epoman]

Jeff, how about you learn about being Angie's "HUSBAND" first and a legal caregiver second. I mean is Angie looking for a Husband or a caregiver? You make it seem like that as soon as you two are married you are her "legal" caregiver, how about you start off as her Husband first. My wife is my WIFE not my legal caregiver, and I am her Husband, not her sick helpless legal partner. It seems to me that Angie is very independent and believe it or not Jeff she may out live YOU, or she may become YOUR caregiver one day, so instead of trying to learn how to make her miserable/helpless (as you imply) life better, learn to live for now not for the future.

Sorry for speaking my mind, but that's what I do, "I call it like I see it" sometimes it gets me in trouble, but at least I am honest.

- Epoman

[sarcasium] Maybe I should just ask you HOW I should become a better husband to Angie since you seemingly appear to be the leading authority on marriage. [/sarcasium]  I hope you realize that I am taking offense to your publicly humiliating me when this could have been discussed privately.  I see now that you are taking offense to my statement of patients and spouses of patients feeling of helplessness but your taking it to far.  Two wrongs do not make a right.  If you have a problem with what I said then please, lets just take this in your office and talk about this privately.

[sarcasium] Well I wouldn't go as far as "leading authority" as I am far from perfect, but I have been happily married for 13+ years and my wife and I are very happy, all awhile being a sick helpless person, husband, father. Just ask goofynina, she saw in person how my wife and I are, we are a TEAM, she does not have to take care of poor me. Maybe you could learn a few tips. I know I always appreciate tips on situations that people have more experience than me on. Don't you like tips? But you are not a husband yet are you, so I'll save my tips for later.  [/sarcasium] (See I can do it too) 

Anyway, Jeff why are you so upset? "Publicly humiliating me" why would you say that? I was simply stating I was against your comments. I am sorry if you feel humiliated as that was really not my intention. How do you think I felt being thought of as "helpless/hopeless/depressed/sick/ and nothing can be done to ever change that" those were your words weren't they? Why talk about this privately, it's already in the open. You brought it up publicly so why not discuss it publicly. I am not mad at you, do you think I am? I was simply pointing out Jeff that you should live for the NOW and not live to think of ways to make "poor helpless" Angie live a comfortable life, as she may become your caregiver first. You never know in this world, live for the NOW! Or maybe she is looking for that, maybe she wants someone to take care of her, wait on her hand and foot, feel sorry for her, and treat her like a helpless invalid. I don't know. But if she is looking for that in a man then according to your words in your original post, she found him. I was just stating in my post that It would emotionally kill me if my wife thought of me as a helpless/hopeless person, I would then believe she was just staying with me in our marriage out of "pity" and feeling sorry for me. Don't get me wrong my wife helps me with tasks and she does things to make my life easier and I am very blessed to have her, however I do things to make her life easier too. According to her she does not see me as helpless individual, she sees me as a very strong person despite all the problems I have faced.

Sorry again, if you think I was trying to publicly humiliate you, as I was not. I was just speaking my mind. After all this is a public forum. And you know as well as I do, that if we were on the phone or in person this conversation would have went a different way, as emotions are not transferred in text. Again I apologize that this upset you, but I (and 4 others) were upset as well.

I completely understand Jeff you have admirable and good intentions and you are just trying to learn how to adapt to Angies lifestyle. And I wish you the best of luck in your future together.

- Epoman

[angieskidney]

Don't worry Angie, I am not upset with Jeff at all (no need to defend him), I would just like a better clarification from HIM, so lets let Jeff speak for himself shall we?

Of course there have been times where I "FELT" (felt being the key word) helpless but mostly it was a feeling of anger that I had to go through these situations in the first place. When I first found out about my kidney disease I put a hole in the hospital wall with my fist. I was angry not helpless. Even when I laid in my hospital bed with 2 broken hips, sure I "felt" helpless...

So let me reiterate, yes I have had my moments of feeling helpless, however I am a fighter, I drew strength knowing that things would indeed get better. I have been depressed, and I have almost wanted to give up yet I never did. I have gone through more complications of kidney disease than most people here on this site. And I still continue and I try to be strong for my son and my wife.

Jeff, how about you learn about being Angie's "HUSBAND" first and a legal caregiver second. I mean is Angie looking for a Husband or a caregiver? You make it seem like that as soon as you two are married you are her "legal" caregiver, how about you start off as her Husband first. My wife is my WIFE not my legal caregiver, and I am her Husband, not her sick helpless legal partner. It seems to me that Angie is very independent and believe it or not Jeff she may out live YOU, or she may become YOUR caregiver one day, so instead of trying to learn how to make her miserable/helpless (as you imply) life better, learn to live for now not for the future.

Sorry for speaking my mind, but that's what I do, "I call it like I see it" sometimes it gets me in trouble, but at least I am honest.

- Epoman

Okay you two .. at first I was taking offence to what Epoman said until the end and I hate to say it but Epoman is right! I DO need a husband and not a caregiver since I am doing fine on my own.

I was simply pointing out Jeff that you should live for the NOW and not live to think of ways to make "poor helpless" Angie live a comfortable life, as she may become your caregiver first. You never know in this world, live for the NOW!

My health right now is too good to need a caregiver. Really I just need support and understanding and you have all been an inspiration. True Epoman shouldn't have taken offence to Jeff saying "helpless" since he was only going by what he has noticed how people talk on here about how they feel about their mates, not about me at all. But everyone is free to speak their mind and I think everyone's input in this thread has been very helpful! Thanks everyone! Yes, Epoman gets defensive but it is part of the fighting nature and I think everyone realizes that Sandman is just trying to understand (it is hard when we live in two different countries and are not around each other all the time. So really he is very interested in how the rest of you do it) and Epoman, why did they want to put you in a home? That is rediculous! I would have been mad too! Just because you are in a wheelchair does NOT make you helpless! Man I have seen people in a much worse state do AMAZING things! Don't let them get you down! Man I can understand why you got so mad! Man just readint that pissed me off!

And Jeff, no matter what we can get through anything together! I worry about burdening you as you could have anyone! But when I am in a slump you do well to get me out of it! And really that is all any dialysis patient needs! Thanks for that!

Why does anyone need to PM Epoman to tell him that they were offended? Can't we talk things through without running to "Dad"? I am not saying I agree or disagree with what Jeff said, but he said it in the caregiver/spouse section, he was trying to express his feelings as best he could, which can be difficult not to come across as offensive on the internet. Just my but there may be better ways to react here.

Exactly! No need for anyone to get offended! 

I fought and I got out of that hospital within a week, EVEN after the doctors wanted to put me in a nursing home. I left that hospital in severe pain and told the doctors no way I am going to a "home". Maybe it's the people you are around, Angie for example is always stating how sick she is and how much she has gone through, I.E. "Sick since birth", living in the past. etc, etc!

And no I am NOT looking for someone who will pity me. I am only looking for understanding. And why are you getting defensive? He was not calling you helpless but stating what he noticed about how some people talk about thier mates. Anyway .. I noticed for a long time how you keep bringing up how I used to say I was born sick. We talked about this on Skype time and time again but you still focus on that even though we had agreed that it gave people the wrong impression. Why do I talk about it with you if you keep focusing on what I USED to do? I don't say that anymore and the only reason I used to is because I was used to people not remembering my circumstance. I don't feel sorry for myself every single day but have done it alone for 16 years now. I am a FIGHTER like we all HAVE to be (I know you know this to be true!  ) Longer than you (I believe you said you were healthy before the last 13 years but correct me if I am wrong). I only used to say I was born sick because my perception is different than those people who had a healthy good run before having to go on disability and work less hours or claim bankruptcy (note: I am NOT generalizing. Everyone's situation is different.) Please realize that Jeff was not saying YOU are helpless but that all patients have had times when they feel this way. Jeff probably feels attacked because you are making this about you when he only wanted advice for the future. Sorry if my post offends anyone. If it does then I will just keep my oppinions to myself after this because this was just about getting advice. Why is it always blowing up like this? Well, I know you get defensive and have every right to defend yourself. But this wasn't about who feels helpless or not. It was about what a partner can do to make the situation more smoother.

Anyone else have any good advice for being a great support of anyone on dialysis in an every day life?

[Epoman]

Okay you two .. at first I was taking offence to what Epoman sid until the end and I hate to say it but Epoman is right! I need a husband. My health right now is too good to need a caregiver. Really I just need support and understanding and you have all been an inspiration. True Epoman shouldn't have taken offence to Jeff saying "helpless" since he was only going by what he has noticed how people talk on here about how they feel about their mates, not about me at all. But everyone is free to speak their mind and I think everyone's input in this thread has been very helpful! Thanks everyone! Yes, Epoman gets defensive but it is part of the fighting nature and I think everyone realizes that Sandman is just trying to understand (it is hard when we live in two different countries and are not around each other all the time. So really he is very interested in how the rest of you do it) and Epoman, why did they want to put you in a home? That is rediculous! I would have been mad too! Just because you are in a wheelchair does NOT make you helpless! Man I have seen people in a much worse state do AMAZING things! Don't let them get you down! Man I can understand why you got so mad! Man just readint that pissed me off!

And Jeff, no matter what we can get through anything together! I worry about burdening you as you could have anyone! But when I am in a slump you do well to get me out of it! And really that is all any dialysis patient needs! Thanks for that!

Anyone else have any good advice for being a great support of anyone on dialysis in an every day life?

Hi Angie, Thanks for understanding my side and the point I was trying to make, as I was just looking out for your best interest, you are a young independent woman and of course it is nice to have someone care about you, but you need a companion not a caregiver. 

When I had broken both my hips, I was in so much pain I could not transfer by myself. Plus my wife had to work full time, and my son was to young to be of any real help. So the doctors wanted to put me in a home but I said no way and my wife told them to go to hell. I fought and signed myself out of the hospital in extreme pain and went home. And here I am almost 6 years later, not helpless one bit.

- Epoman

[angieskidney]

Okay you two .. at first I was taking offence to what Epoman sid until the end and I hate to say it but Epoman is right! I need a husband. My health right now is too good to need a caregiver. Really I just need support and understanding and you have all been an inspiration. True Epoman shouldn't have taken offence to Jeff saying "helpless" since he was only going by what he has noticed how people talk on here about how they feel about their mates, not about me at all. But everyone is free to speak their mind and I think everyone's input in this thread has been very helpful! Thanks everyone! Yes, Epoman gets defensive but it is part of the fighting nature and I think everyone realizes that Sandman is just trying to understand (it is hard when we live in two different countries and are not around each other all the time. So really he is very interested in how the rest of you do it) and Epoman, why did they want to put you in a home? That is rediculous! I would have been mad too! Just because you are in a wheelchair does NOT make you helpless! Man I have seen people in a much worse state do AMAZING things! Don't let them get you down! Man I can understand why you got so mad! Man just readint that pissed me off!

And Jeff, no matter what we can get through anything together! I worry about burdening you as you could have anyone! But when I am in a slump you do well to get me out of it! And really that is all any dialysis patient needs! Thanks for that!

Anyone else have any good advice for being a great support of anyone on dialysis in an every day life?

Hi Angie, Thanks for understanding my side and the point I was trying to make, as I was just looking out for your best interest, you are a young independent woman and of course it is nice to have someone care about you, but you need a companion not a caregiver. 

When I had broken both my hips, I was in so much pain I could not transfer by myself. Plus my wife had to work full time, and my son was to young to be of any real help. So the doctors wanted to put me in a home but I said no way and my wife told them to go to hell. I fought and signed myself out of the hospital in extreme pain and went home. And here I am almost 6 years later, not helpless one bit.

- Epoman

And I am proud of you that you are a fighter!    You are TRULY an Inspiration to us all!

[kitkatz]

I think Sandmansa was looking for an asnwer to the age old questions of when to help and when to back off.  Sometimes an illness takes up all of the patient's time.  That leaves the care giver in the cold wanting to help but not knowing how to do it.  There are stages to illness and healing and I think we should be familiar with them as care givers.  Also we need to find out everything we can about what is happening to the ill person. 

[sandman]

Jeff, how about you learn about being Angie's "HUSBAND" first and a legal caregiver second. I mean is Angie looking for a Husband or a caregiver? You make it seem like that as soon as you two are married you are her "legal" caregiver, how about you start off as her Husband first. My wife is my WIFE not my legal caregiver, and I am her Husband, not her sick helpless legal partner. It seems to me that Angie is very independent and believe it or not Jeff she may out live YOU, or she may become YOUR caregiver one day, so instead of trying to learn how to make her miserable/helpless (as you imply) life better, learn to live for now not for the future.

Sorry for speaking my mind, but that's what I do, "I call it like I see it" sometimes it gets me in trouble, but at least I am honest.

- Epoman

[sarcasium] Maybe I should just ask you HOW I should become a better husband to Angie since you seemingly appear to be the leading authority on marriage. [/sarcasium]  I hope you realize that I am taking offense to your publicly humiliating me when this could have been discussed privately.  I see now that you are taking offense to my statement of patients and spouses of patients feeling of helplessness but your taking it to far.  Two wrongs do not make a right.  If you have a problem with what I said then please, lets just take this in your office and talk about this privately.

[sarcasium] Well I wouldn't go as far as "leading authority" as I am far from perfect, but I have been happily married for 13+ years and my wife and I are very happy, all awhile being a sick helpless person, husband, father. Just ask goofynina, she saw in person how my wife and I are, we are a TEAM, she does not have to take care of poor me. Maybe you could learn a few tips. I know I always appreciate tips on situations that people have more experience than me on. Don't you like tips? But you are not a husband yet are you, so I'll save my tips for later.  [/sarcasium] (See I can do it too) 

Anyway, Jeff why are you so upset? "Publicly humiliating me" why would you say that? I was simply stating I was against your comments. I am sorry if you feel humiliated as that was really not my intention. How do you think I felt being thought of as "helpless/hopeless/depressed/sick/ and nothing can be done to ever change that" those were your words weren't they? Why talk about this privately, it's already in the open. You brought it up publicly so why not discuss it publicly. I am not mad at you, do you think I am? I was simply pointing out Jeff that you should live for the NOW and not live to think of ways to make "poor helpless" Angie live a comfortable life, as she may become your caregiver first. You never know in this world, live for the NOW! Or maybe she is looking for that, maybe she wants someone to take care of her, wait on her hand and foot, feel sorry for her, and treat her like a helpless invalid. I don't know. But if she is looking for that in a man then according to your words in your original post, she found him. I was just stating in my post that It would emotionally kill me if my wife thought of me as a helpless/hopeless person, I would then believe she was just staying with me in our marriage out of "pity" and feeling sorry for me. Don't get me wrong my wife helps me with tasks and she does things to make my life easier and I am very blessed to have her, however I do things to make her life easier too. According to her she does not see me as helpless individual, she sees me as a very strong person despite all the problems I have faced.

Sorry again, if you think I was trying to publicly humiliate you, as I was not. I was just speaking my mind. After all this is a public forum. And you know as well as I do, that if we were on the phone or in person this conversation would have went a different way, as emotions are not transferred in text. Again I apologize that this upset you, but I (and 4 others) were upset as well.

I completely understand Jeff you have admirable and good intentions and you are just trying to learn how to adapt to Angies lifestyle. And I wish you the best of luck in your future together.

- Epoman

Look Bill, lets just get one thing straight.  I never said that you, or any other patient was helpless.  I was only making reference to what others in this board have stated about their FEELING OF HELPLESSNESS when things are at there worst.  Were talking about money problems, bad dialysis days, serious medical complications, repeated trips to the hospital and so on and so on.  Where you got my calling you helpless was your own twist on words because that is not what I meant to say.  That is what I got upset about and is what I feel I need to clarify.

Now about my future with Angie.  Yes, of course I want to marry Angie and be her husband but you know, it's only natural to try and care for your spouse when you can.  I'm not saying the I WANT to wait on her hand and foot because I am sure that could take it's toll on anyone.  Besides, Angie is fully capable to care for herself right now anyway.    BUT, I am willing to do what I can, when I can.  One thing you did make note of is that our rolls could easily be reversed and she would have to care for me.  Yeah, that is not impossible but unlikely at this point in time.  Why you brought that up is beyond me.

Anyway, I want to get this back on topic.  I really appreciate all the good advice that everyone has posted thus far and I would like to continue on that.

I think Sandmansa was looking for an asnwer to the age old questions of when to help and when to back off. Sometimes an illness takes up all of the patient's time. That leaves the care giver in the cold wanting to help but not knowing how to do it. There are stages to illness and healing and I think we should be familiar with them as care givers. Also we need to find out everything we can about what is happening to the ill person.

You understood me kitkatz.  You know what I was looking for.  I only wish "I" could have worded something more like this.  Thank you.   

[Epoman]

Jeff, how about you learn about being Angie's "HUSBAND" first and a legal caregiver second. I mean is Angie looking for a Husband or a caregiver? You make it seem like that as soon as you two are married you are her "legal" caregiver, how about you start off as her Husband first. My wife is my WIFE not my legal caregiver, and I am her Husband, not her sick helpless legal partner. It seems to me that Angie is very independent and believe it or not Jeff she may out live YOU, or she may become YOUR caregiver one day, so instead of trying to learn how to make her miserable/helpless (as you imply) life better, learn to live for now not for the future.

Sorry for speaking my mind, but that's what I do, "I call it like I see it" sometimes it gets me in trouble, but at least I am honest.

- Epoman

[sarcasium] Maybe I should just ask you HOW I should become a better husband to Angie since you seemingly appear to be the leading authority on marriage. [/sarcasium]  I hope you realize that I am taking offense to your publicly humiliating me when this could have been discussed privately.  I see now that you are taking offense to my statement of patients and spouses of patients feeling of helplessness but your taking it to far.  Two wrongs do not make a right.  If you have a problem with what I said then please, lets just take this in your office and talk about this privately.

[sarcasium] Well I wouldn't go as far as "leading authority" as I am far from perfect, but I have been happily married for 13+ years and my wife and I are very happy, all awhile being a sick helpless person, husband, father. Just ask goofynina, she saw in person how my wife and I are, we are a TEAM, she does not have to take care of poor me. Maybe you could learn a few tips. I know I always appreciate tips on situations that people have more experience than me on. Don't you like tips? But you are not a husband yet are you, so I'll save my tips for later.  [/sarcasium] (See I can do it too) 

Anyway, Jeff why are you so upset? "Publicly humiliating me" why would you say that? I was simply stating I was against your comments. I am sorry if you feel humiliated as that was really not my intention. How do you think I felt being thought of as "helpless/hopeless/depressed/sick/ and nothing can be done to ever change that" those were your words weren't they? Why talk about this privately, it's already in the open. You brought it up publicly so why not discuss it publicly. I am not mad at you, do you think I am? I was simply pointing out Jeff that you should live for the NOW and not live to think of ways to make "poor helpless" Angie live a comfortable life, as she may become your caregiver first. You never know in this world, live for the NOW! Or maybe she is looking for that, maybe she wants someone to take care of her, wait on her hand and foot, feel sorry for her, and treat her like a helpless invalid. I don't know. But if she is looking for that in a man then according to your words in your original post, she found him. I was just stating in my post that It would emotionally kill me if my wife thought of me as a helpless/hopeless person, I would then believe she was just staying with me in our marriage out of "pity" and feeling sorry for me. Don't get me wrong my wife helps me with tasks and she does things to make my life easier and I am very blessed to have her, however I do things to make her life easier too. According to her she does not see me as helpless individual, she sees me as a very strong person despite all the problems I have faced.

Sorry again, if you think I was trying to publicly humiliate you, as I was not. I was just speaking my mind. After all this is a public forum. And you know as well as I do, that if we were on the phone or in person this conversation would have went a different way, as emotions are not transferred in text. Again I apologize that this upset you, but I (and 4 others) were upset as well.

I completely understand Jeff you have admirable and good intentions and you are just trying to learn how to adapt to Angies lifestyle. And I wish you the best of luck in your future together.

- Epoman

Look Bill, lets just get one thing straight. I never said that you, or any other patient was helpless.  I was only making reference to what others in this board have stated about their FEELING OF HELPLESSNESS when things are at there worst.  Were talking about money problems, bad dialysis days, serious medical complications, repeated trips to the hospital and so on and so on.  Where you got my calling you helpless was your own twist on words because that is not what I meant to say.  That is what I got upset about and is what I feel I need to clarify.

Now about my future with Angie.  Yes, of course I want to marry Angie and be her husband but you know, it's only natural to try and care for your spouse when you can.  I'm not saying the I WANT to wait on her hand and foot because I am sure that could take it's toll on anyone.  Besides, Angie is fully capable to care for herself right now anyway.    BUT, I am willing to do what I can, when I can.  One thing you did make note of is that our rolls could easily be reversed and she would have to care for me.  Yeah, that is not impossible but unlikely at this point in time.  Why you brought that up is beyond me.

Anyway, I want to get this back on topic.  I really appreciate all the good advice that everyone has posted thus far and I would like to continue on that.

I think Sandmansa was looking for an asnwer to the age old questions of when to help and when to back off. Sometimes an illness takes up all of the patient's time. That leaves the care giver in the cold wanting to help but not knowing how to do it. There are stages to illness and healing and I think we should be familiar with them as care givers. Also we need to find out everything we can about what is happening to the ill person.

You understood me kitkatz.  You know what I was looking for.  I only wish "I" could have worded something more like this.  Thank you.   

No, let's get this straight, that's not what you said in your original post, here it is again:

I know that a patients life is stressful and depressing enough with having to deal with being sick and helpless for the rest of their lives and that there is nothing that can be done to change that.

I did not twist the words, I was just quoting what you said. That is what you said isn't? It's not my fault you do not know how to express yourself properly, and if I get offended by a comment, I will let it be known. I did not say you called me helpless personally, you called EVERYONE on this board helpless. Read your words again SLOWLY.

But now you said something else that offended me, good job. Let me quote you again:

One thing you did make note of is that our rolls could easily be reversed and she would have to care for me.  Yeah, that is not impossible but unlikely at this point in time.  Why you brought that up is beyond me.

REALLY? Why is it unlikely? Are you immune to becoming ill, are you special and some how better than us helpless people? Some people on this board have just gone in for an annual check up and the next you know the doc tells them "you have Kidney Disease"? Or is it that you are one of those people who thinks to themselves "Oh that will never happen to me"? I brought it up because you are so concerned about poor helpless Angie and how you can make her life better, that you think that you are immune to anything bad happening to you. You can get hit by a car crossing the street, we just never know in this world our life can do a 360 degree turn in a moment. Right now you being a fiance, you need to concentrate on sending her flowers and candy, not figuring out how you will wipe her drool 20 years from now or getting advice on how to make her not feel so helpless.

Jeff you want some advice? fine, here it is: LIVE FOR THE DAY! LIVE IT LIKE IT IS YOUR LAST! Send her some flowers, send her a some candles and bubble bath, when you talk to her on the phone and she starts talking about how bad her day was, tell her how you'll both be together soon and you'll be able to give her a complete body rub down when she gets back home from dialysis. When she is feeling down instead of letting her wallow in her own pity, tell her to take a ride to a local burn unit and take a look at people who are burned 90% of their body and eat through a feeding tube. Reinforce the POSITIVE things in her life, don't reinforce the NEGATIVE things.

I am sorry, but by your previous posts in other threads and in conversations we have had in skype, I wonder if it is true love between you two, or is it pity on your part. You know, trying to be the hero and help poor Angie in her dire situation. Sort of like "Rescue the damsel in distress" http://en.wikipedia.org/wiki/Damsel_in_distress

You Want to get this back on topic, well it's been on topic the whole time. You just don't like hearing what I think.

- Epoman

[sandman]

Bill, do you have some sort of resentment toward me or is it all healthy people?

[Epoman]

Bill, do you have some sort of resentment toward me or is it all healthy people?

Hmmm did I hit a "Nerve"? All that I replied to you and that's the best you can come up with? A cheap shot?

Did you not like my tips/advice? I gave you advice isn't that what you wanted?

Let's see my wife, my son, my 2 best friends, my friends, my dad, my mom, my brother, my online friends (not counting IHD), many associates, are all perfectly healthy. And I do not resent them one bit, jealous sometimes sure, but I love them all. They did not make me ill, healthy people are not to blame for my problems. This is just the hand I was dealt in the game of life and I accept my fate and I will fight until my last breath.

- Epoman

[tamara]

My 

I AM NOT HELPLESS

[Sluff]

At my stage in the kidney disease world I am definitely not helpless and hope I never feel that way. I'm scared shitless. I hope that it will be a long time before I need dialysis. I hope I never have to be in Epoman's shoes or Angie's shoes.(or Tamaras barefeet) However I'm not in control of my future, I can only do my best to help the kidneys I have to live as long as possible. As far as the caregivers point of view: If I am put in the caregivers position for any member of my family I as caregiver would be the one feeling helpless at times, because there would be nothing for me to do that could take my loved ones health problems away. When my Dad died a long slow death I felt helpless sometimes, when my mother was sick I was her caretaker along with my wife, traveled 200 miles round trip daily to be caregiver, when the chemo only made her sicker I felt helpless watching her die before my eyes I felt helpless.

Just my    worth from a different point of view.

I'm staying neutral on the debate, but as normal debates go they sometimes get heated and feelings get hurt. If you can't deal with that fact then stay out of the debate.

[angieskidney]

As far as the caregivers point of view: If I am put in the caregivers position for any member of my family I as caregiver would be the one feeling helpless at times, because there would be nothing for me to do that could take my loved ones health problems away. When my Dad died a long slow death I felt helpless sometimes, when my mother was sick I was her caretaker along with my wife, traveled 200 miles round trip daily to be caregiver, when the chemo only made her sicker I felt helpless watching her die before my eyes I felt helpless.

Yeah exactly! That is how I felt as well when my Aunt died of Cancer! It was sooo hard watching her dwindle away when they said there was nothing they could do for her this time around (she fought it twice before successfully). She had a special crane in her home to lift her out of bed. You are right Sluff! I never felt so helpless ever in my life! I mean .. I can handle my own health, but how can you help someone else? I was thinking, "DAMN IT! I AM supposed to have the health problems .. NOT HER!"  She was such a wonderful woman and left behind her only child, a 19 year old daughter. I wondered how would she be able to go on without her mom.

What do you do in a situation like that?

[sandman]

I did not twist the words, I was just quoting what you said. That is what you said isn't? It's not my fault you do not know how to express yourself properly, and if I get offended by a comment, I will let it be known. I did not say you called me helpless personally, you called EVERYONE on this board helpless. Read your words again SLOWLY.

I admit that I am not a novelist or an English professor so sometimes my choice of wording gets interpreted differently then I intended.  Most people would have asked me what was my meaning if they miss understood but you just saw the one word and twisted my statement out of proportion.  I know what I said and if the word helpless offends you then I ask you to please re-read and translate the word helpless to feeling of helplessness.

But now you said something else that offended me, good job. Let me quote you again:

One thing you did make note of is that our rolls could easily be reversed and she would have to care for me.  Yeah, that is not impossible but unlikely at this point in time.  Why you brought that up is beyond me.

REALLY? Why is it unlikely? Are you immune to becoming ill, are you special and some how better than us helpless people? Some people on this board have just gone in for an annual check up and the next you know the doc tells them "you have Kidney Disease"? Or is it that you are one of those people who thinks to themselves "Oh that will never happen to me"? I brought it up because you are so concerned about poor helpless Angie and how you can make her life better, that you think that you are immune to anything bad happening to you. You can get hit by a car crossing the street, we just never know in this world our life can do a 360 degree turn in a moment. Right now you being a fiance, you need to concentrate on sending her flowers and candy, not figuring out how you will wipe her drool 20 years from now or getting advice on how to make her not feel so helpless.

Again, you are jumping to conclusions and miss interpreting my words.  You didn't read what I said, did you?  Sure, I maybe healthy at the moment but I do know that could change at any moment.  But what you FAILED to realize is that Angie and I currently live 600 miles apart and she is on in-clinic hemo in Canada.  Tell me, how could she care for me if I was to get ill now?  But as you so well put it, yes, I am very concerned about Angie because she is the love of my life and my new fiance.  But NEVER have I EVER called her "helpless".

Jeff you want some advice? fine, here it is: LIVE FOR THE DAY! LIVE IT LIKE IT IS YOUR LAST! Send her some flowers, send her a some candles and bubble bath, when you talk to her on the phone and she starts talking about how bad her day was, tell her how you'll both be together soon and you'll be able to give her a complete body rub down when she gets back home from dialysis. When she is feeling down instead of letting her wallow in her own pity, tell her to take a ride to a local burn unit and take a look at people who are burned 90% of their body and eat through a feeding tube. Reinforce the POSITIVE things in her life, don't reinforce the NEGATIVE things.

I always live for the day but not like it's my last.  I enjoy every day I get to see.  I could send her all any one of those things you suggest ( when I have money ) but she is not that meterialistic and can wait until I am there to give them to her in person.  We do talk on the phone every day and we do discuss how we will be together soon.  I give her massages daily when I am there, even rub her legs and feet when she is in dialysis.  When she is feeling down, I try to cheer her up but taking her to a burn unit to show her people less fortunate then her is out of the question in my book.

I am sorry, but by your previous posts in other threads and in conversations we have had in skype, I wonder if it is true love between you two, or is it pity on your part. You know, trying to be the hero and help poor Angie in her dire situation. Sort of like "Rescue the damsel in distress" http://en.wikipedia.org/wiki/Damsel_in_distress

You Want to get this back on topic, well it's been on topic the whole time. You just don't like hearing what I think.

- Epoman

You have a lot of nerve to even suggest that my feelings for Angie are based soley on her situation.  You don't have a clue what Angie and I share together and I am not about to explain it here.  

[Epoman]

I admit that I am not a novelist or an English professor so sometimes my choice of wording gets interpreted differently then I intended.  Most people would have asked me what was my meaning if they miss understood but you just saw the one word and twisted my statement out of proportion.  I know what I said and if the word helpless offends you then I ask you to please re-read and translate the word helpless to feeling of helplessness.

I told you and I will say it again, I was not the only one who as you call it "twisted" your words I received PM's from members who were upset but did not wish to confront you, so I spoke up for them. As I stated earlier if you look at the date of your original post, it was several days until I replied. I felt your post needed to be discussed after the PM's I received.

Again, you are jumping to conclusions and miss interpreting my words.  You didn't read what I said, did you?  Sure, I maybe healthy at the moment but I do know that could change at any moment.  But what you FAILED to realize is that Angie and I currently live 600 miles apart and she is on in-clinic hemo in Canada.  Tell me, how could she care for me if I was to get ill now?  But as you so well put it, yes, I am very concerned about Angie because she is the love of my life and my new fiance.  But NEVER have I EVER called her "helpless".

Well I guess that you would move over to Canada quicker than planned. Or she would come to the states quicker. I mean 600 miles isn't much for true love is it? And besides you sure changed your comments about this, when we discussed it on Skype last night you mentioned how healthy you were and how you just had a check up, and it came out fine. Funny how you didn't mention this on Skype. And no you may have never called her "helpless" but you've thought it. Why else would you make your original thread to try to get advice on how to make Angie's depressed/helpless (your words) life better.

I always live for the day but not like it's my last.  I enjoy every day I get to see.  I could send her all any one of those things you suggest ( when I have money ) but she is not that meterialistic and can wait until I am there to give them to her in person.  We do talk on the phone every day and we do discuss how we will be together soon.  I give her massages daily when I am there, even rub her legs and feet when she is in dialysis.  When she is feeling down, I try to cheer her up but taking her to a burn unit to show her people less fortunate then her is out of the question in my book.

A woman is materialistic if she likes to receive flowers and candy once in a while? But that's not you said on Skype last night, again mentioning our short conversation about 3 hours ago from the time I am posting this. Your EXACT WORDS were "but I can't send Angie candy" then you added "what is she suppose to do with candy?" and I said "she can't have candy? is she that much of a sicko?" (I was being sarcastic) and you said "lol" and added "well, if she takes a binder with it...... I suppose she could" You made it seem like she can't have candy because she is so sick. So what is it Jeff is it the money or you just see another limitation on Angie and think why bother sending Angie candy at all. Here's a hint Jeff there are plenty of renal friendly candies out there. And here's another hint most of it's very cheap.

Taking Angie to a burn unit was an just example, Jeff. I was trying to explain to you that when Angie is VENTING to you and feeling sorry for herself, you should be POSITIVE and not just comfort her. For example Angie has complained about hating her apartment so many times, it's too small, she hates the manager, etc, etc. Well you should be telling her how lucky she is to have a roof over her head and some people have cardboard over their head and are homeless. When she talks about how tired she gets from walking to the cab, you should tell her how lucky she is that she can walk at all, what about people in wheelchairs or people with no arms or legs or people with NO limbs at all. When Angie is complaining that she has been sick since birth, you should remind her all of the wonderful things she has experienced in life, like a first kiss, falling in love, watching a sunset, making love. What about the kids who have died very young and never got to experience any of those things at all. You say you try to cheer her up but how? Do you do those things I mentioned? Sometimes we need a "slap" in the face (not literally) to remind us of the good things about our lives, to snap us back into reality. I bet you most of those single burn victims don't have a ring and fiance waiting for them when they get out.

I am not saying she doesn't have a right to vent once in a while, hell I vent a lot as well, but if you notice it as a constant thing then you should do your best to reinforce the positives in her life. I know when I get depressed and I say to myself "WHY ME" then I try to remember what a wise person once told me "WHY NOT ME" and it made me think about the good things in my life and how many people are so much worse off than me. With all the problems we face as dialysis patients it is very easy to go into a deep depression, and I have seen a patient commit suicide because of it.

You have a lot of nerve to even suggest that my feelings for Angie are based soley on her situation.  You don't have a clue what Angie and I share together and I am not about to explain it here. 

Maybe your right but I have an idea, however when you come on a public forum and air your situations, you are inviting people into your lives. But you know what Jeff, I think you and Angie make a good couple you guys truly deserve each other. I think you need her emotionally and as much as she needs you emotionally. Keyword being emotionally.

- Epoman


To ANGIE:

I don't know why I try to help you so much, with websites and life in general maybe because I never had a sister or maybe I deep down just don't trust Jeff, since the problems we had in the beginning. Or maybe because I feel a need to defend a fellow kidney disease sufferer and or maybe if Jeff was on dialysis himself I would feel he had a better understanding of what you actually go through. As I have seen many spouses leave their sick spouse because they couldn't take the pressure anymore of dealing with a dialysis patient, and maybe I am worried that Jeff may feel that way one day. I am sorry if I upset you. But know this I do have your best interest in mind. I wish I didn't care so much but I do. And for that I apologize. let me know when you would like this thread locked.

- Epoman

[nextnoel]

Please!  Knock it off, Guys!  You both have valid points.  You both are good guys.  You've both given us lots to think about.  But this back-and-forth stuff has taken on a life of its own, and it doesn't seem so productive anymore.   You two have FAR more in common than you have as differences, and perhaps the time has come to reflect on that more.

Epoman:  no one on earth could possibly see you as helpless - you prove on a daily basis that you are fully capable of living a life accomplishing far more than most people I've ever met, and with grace and humor.

Sandsmana:  your intentions toward Angie are obviously honorable and sincere, and you are to be commended for your caring efforts to be a stand-up kind of guy.

Everyone:  Maybe I'm the only one uncomfortable with the heat this has generated, and while I think the way it unfolded is perfectly understandable and the points made are worthwhile, I think it's gotten a bit like 'whoever has the last word wins', when the prize isn't something anyone would really want!  I know I'm new here, and I certainly don't have enough personal experience or hubris to speak for anyone else, but just on a human level, I'd like to see the cycle this has fallen into interrupted. 

Please don't take this the wrong way, because I have only the greatest respect for everyone on this site, and I'm not criticizing, I'm just thinking it's time to step back and take a deep breath!

[Epoman]

Please!  Knock it off, Guys!  You both have valid points.  You both are good guys.  You've both given us lots to think about.  But this back-and-forth stuff has taken on a life of its own, and it doesn't seem so productive anymore.   You two have FAR more in common than you have as differences, and perhaps the time has come to reflect on that more.

Epoman:  no one on earth could possibly see you as helpless - you prove on a daily basis that you are fully capable of living a life accomplishing far more than most people I've ever met, and with grace and humor.

Sandsmana:  your intentions toward Angie are obviously honorable and sincere, and you are to be commended for your caring efforts to be a stand-up kind of guy.

Everyone:  Maybe I'm the only one uncomfortable with the heat this has generated, and while I think the way it unfolded is perfectly understandable and the points made are worthwhile, I think it's gotten a bit like 'whoever has the last word wins', when the prize isn't something anyone would really want!  I know I'm new here, and I certainly don't have enough personal experience or hubris to speak for anyone else, but just on a human level, I'd like to see the cycle this has fallen into interrupted. 

Please don't take this the wrong way, because I have only the greatest respect for everyone on this site, and I'm not criticizing, I'm just thinking it's time to step back and take a deep breath!

Very well said nextnoel. You are very diplomatic. 

- Epoman

[nextnoel]

Whew!    When I read your reply, Epoman, I actually got tears in my eyes (I was afraid what I said might be viewed as sticking my nose in where it didn't belong)! ! 

I feel better already!

[Epoman]

Whew!    When I read your reply, Epoman, I actually got tears in my eyes (I was afraid what I said might be viewed as sticking my nose in where it didn't belong)! ! 

I feel better already!

You are NEVER sticking your nose where it doesn't belong, you have a right to post in any thread on this site, well except the Premium Members section, interested in becoming a member I know, I know shameless advertisment. But seriously, SPEAK YOUR MIND BABY! I know I do and it gets me in trouble sometimes.  This site is here for YOU!

- Epoman

UPDATE: Well thank you! Your account has been updated, you are now a "Premium Member"  - Epoman

[nextnoel]

Why, thanks!  I've been meaning for awhile to join as a Premium Member, but I'm lazy at getting around to doing things, and your kind reply to me in this post prompted me to take action quickly, before it flew out of my mind again!

[mallory]

Oooooh, this thread makes me sad.  Epoman and Sandman, I think so much of both of you, and I really think you both have good points; dialysis patients are not helpless (but I feel helpless sometimes), and the people who love dialysis patients want the best for them. 

I wish only the best for both of you, and for those that you care about. 

[kitkatz]

I still think what Sandmansa wanted was ways for caregivers to not feel so helpless in their everyday life with a dialysis patient. It takes up a huge part of life with treatment everyday or every other day.  And the eating difficulties are an everyday occurrence and often the patient does not feel good and is lethargic.  There are problems to deal with on a daily basis and problems to deal with in the short and long term.  I think Jeff was looking for answers of what to do as a caregiver with all of these things staring him in the face.  It is scary, especially when caregivers come here for support, too.  He sees so many problems here on the board, and as a cargiver I think he might feel a little overwhelmed.  Remember this board was set up for support, so we bring our problems and concerns over here where other patients can help us.  It is not candy and roses over here all the time.  That is why there is an off-topic section on the board.  Jeff is just going to have to do what all of us do, learn to live with a disease in your life every day of their lives together.  It is a daunting task and it is up to both partners in the relationship to decide how to deal with everything.  Unfortunately there are no easy answers.
     I have found that in a relationship you have to learn to lean on each other in the rough times and the good times.  Sometimes I lean on Victor, sometimes he leans on me.  We are like the old couple in a commercial walking slowly down the road. He leans on her and does not fall, she leans on him and does not fall. Together they help each other to make it safely.  I really think marriage is our chance to help one another to lead more complete lives together. 
     My two cents about the argument here is that two people who care about someone are butting heads over issues that are moot pints.  So shake hands like gentlemen and begin again!

[angieskidney]

I still think what Sandmansa wanted was ways for caregivers to not feel so helpless in their everyday life with a dialysis patient.

Exactly! Thank you for everyone who posted! You too NextNoel!

To ANGIE:

I don't know why I try to help you so much, with websites and life in general maybe because I never had a sister or maybe I deep down just don't trust Jeff, since the problems we had in the beginning. Or maybe because I feel a need to defend a fellow kidney disease sufferer and or maybe if Jeff was on dialysis himself I would feel he had a better understanding of what you actually go through. As I have seen many spouses leave their sick spouse because they couldn't take the pressure anymore of dealing with a dialysis patient, and maybe I am worried that Jeff may feel that way one day. I am sorry if I upset you. But know this I do have your best interest in mind. I wish I didn't care so much but I do. And for that I apologize. let me know when you would like this thread locked.

- Epoman

Okay, after talking with Epoman, how about this:

We DO lock this (at first I said it should be up to Jeff) but start a NEW one based on the same idea Jeff had, BUT clarify that he is not saying us patients are helpless because damn it we KNOW we are not! We fight every day to live our lives as well as anyone! And all of IHD proves this! Jeff can just clarify that he wants to know how caregives can be of encouraging help to all patients!

How is that?

[sandman]

I realize my wording in my first post was not very diplomatic and I am sorry if I have offended anyone with my poorly laid out comment about patients and caregivers feeling of helplessness while dealing with kidney disease.  My intention was not to offend anyone.  At this point, I ask the administrator to go ahead and lock this thread and I will try to word it out again another day.

[Epoman]

THREAD LOCKED per Jeff and Angies request. - Epoman, Owner/Admin