I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: sandman on December 29, 2006, 11:55:00 PM
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I have been noticing that a lot of the caregivers I have taken notice to lately, seem to generally only express their helplessness toward their inability to help their sick spouses/family members in public. I don't mean to sound insensitive or anything as I am not yet a legal caregiver but hope to be one to Angie someday. I was wondering if this is the normal everyday life of a caregiver or do caregivers also try to make their spouses/family members days brighter by focusing on doing nice things and making them feel loved and hopeful?
I know that a patients life is stressful and depressing enough with having to deal with being sick and random feelings of helplessness for the rest of their lives and that there is nothing that can be done to change that. I personally don't ever want to add to Angie's stress but I don't want her to think that I am not taking her illness seriously, because I am. I really want to do anything I can to put her depression to rest.
I am hoping to open this up for discussion and I want to hear everyones opinions.
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The worry and stress does wear you down, as caretaker. I think it comes out because we need help and support too, and voicing
it in the open is probably a healthy thing. But I personally agree with the good side of being a caretaker, which is bringing some
fun and optimism into the life of the patient! I always try to do things with Jenna - take her to plays or movies, go walking or
even just to the video store to rent a game. She really appreciates the little things, which makes helping her even more gratifying.
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Here's a little twist on this topic. See what you think.
My wife (legally separated for financial reasons) and I still live together and everything is the same as being married. The reason we did not divorce is because I need the health insurance. I know we love each other and everybody has their quirks, but relating to this topic I wonder if anyone else gets the feeling that even their spouse and/or caregiver gets angry at them and forgets that they have an illness as serious as ckd.
Here's my question, Does it seem that after awhile the spouse/caregiver becomes selfish and treats you better in front of others, possibly to make themselves look better? I mean is that Love? I wonder if I don't say thanks enough or what? It's not like I can't take care of myself, my disease hasn't even gotten to the point of needing to depend on others. All I'm needing is a little understanding. Everyday she'll ask what did you do all day, and it makes me feel guilty if I was too sick feeling to work that day. This is not meant to be a rant this is just a question to get others perspectives as Sandman asked.
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Of all things, compassion and understanding of what we all are going though is the key. Life goes on, no doubt, and something that IS a burden, like connecting to a machine to be able to live becomes routine for everybody else but the ones doing dialysis. I have to acknowledge that I have great support from my wife, who works a thousand times harder than I do (or I can), and great support from my medical team, who call me, out of the blue, just to know how am I doing...they call to listen and they do. My point is that a caregiver must acknowledge that we are individuals with individual issues, fears and individual side effects to this illness. We are not "part of the job"...we are PEOPLE. Treat others the way you would be treated.
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As the "patient", I think it is so hard for my husband to understand all of this. He sounds like he does when he is talking to relatives, BUT I sometimes think he just doesn't get it. Christmas has really wiped me out. He had to buy gifts for ---- oh yeah, just for me. I had to shop for 4 children, 2 DIL, 7 grandchildren, 6 siblings, and other extended family. Which means I must have wrapped over 100 presents. I cooked the holiday meal, cleaned the house, decorated the house, made all the holiday goodies. Granted, school is out, so I am off for 2 weeks. I can hardly move today and the phone keeps ringing off the hook! I know he is calling to see what I am doing. I am doing nothing--NOTHING--but I feel guilty for doing nothing. I feel compelled to have the house in order and dinner ready when he gets home. Every day he tells me how much his head hurts or his knees or whatever. He really is a good guy and I know he hates me going thru this, but he seems to choose not to think about it and so life should go on as usual. So, caregivers, just do things. Scrub the floor without being asked. Bring home dinner. Don't keep asking "what is wrong?" My life, that is what is wrong!!! We don't like our lives being so different. It truly is the little things that make a difference. Let us be "down" once in awhile. We are going thru alot of emotional junk as well as physical. Seems like I had a lot to say!! Sorry -- get this way when I am worn out!
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As a caregiver and a wife I am committed to making my husband's life as pleasant as possible. I try to relieve him of the conflicts and demands that go with his health issues. I figure he has enough to do just getting through each day. I take care of all the things that need done in our lives and I fight whatever battles that exist with insurance, dialysis and whatever else. I do ask him is he is alright so many times that I drive myself crazy. I think taking time for myself helps too. If I need to get away I arranged for home healthcare services and transportation and get away for a few day.s It makes a world of difference and I come back ready to take on the world again.
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We've had so much going on lately that this is perfect for me right now. I try to keep things as "normal" as they can possibly be for my husband. He feels bad enough having to depend on people for rides and such. Just walking for him is really tough and he's in a wheelchair most of the time. I try to reassure him that all of this is okay, I'm just thrilled he's still here. On the other hand, I can't even count the hundreds of times I've cried the entire way to work and home from work. I don't want to break down in front of him, but sometimes I feel so hopeless I just don't know what to do. It's very rough especially now because he will be having surgery in just a few short weeks. But that's another topic...
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I know your feelings. Hubby is in a wheelchair at home and is using a walker when we go out. It is hard to be the one who watches him try to cope. But then I see both sides because I am in renal failure and on dialysis and he is a recent amputee. We just lean on each other and go ever onward. I do not know what "Normal" is anymore. We are creating new ways of living everyday we make it together.
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I too try to keep things as normal as i can for my husband-I don't ask him to do anything,as it seems surviving is his struggle right now.That being said,I do have days I am overwhelmed.I have days I cry a bunch,but I do try to not let these circumstances get the best of me....I refuse to let dialysis win....we still have many things to be thankful for,and if I expect anything from my husband,I expect him to count our blessings on occasion,just to remind himself what a bounty we do have. On the days when life feels the worst-I can usually act silly and cheer him up,or the kids and I sing to him all the happy songs-like'You are my Sunshine" and since we are wayyy off key it makes him laugh!!
But sometimes when people ask'And how are You holding up dear?' to me......I just don't know what to say-I know they mean well,but I do not do anything special,I just get up everyday,and do what I have to do.end of story
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Life is so hard with its many challenges.
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Just a totally irrelevant and unrelated comment. Did you notice the proliferation of the feline species in this post - we have Jasperkat, then Kitty Cat, then Kitkatz. ;D
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Sandman, Angie is lucky to have you, your post shows that you do understand and you want what is best for Angie, and I know she'll appreciate it.
Sometimes I think the life of a caregiver might even be harder than my life as a patient. I worry all the time about how much of a burden everything has become for my sister. She always says, just like Kitty Cat, that she's just glad I'm still here and she'll do anything she can to make sure I stay here. But I know it's hard for her and I try to do as much as I can so that she doesn't feel like she has to be responsible for everything.
I think it's so important to have as"normal" of a life as you can, but, like Kitkatz said, sometimes that's not really possible so you invent new ways to make it work for you. My sister and I still go to Yellowstone every year, but we don't hike. I still love to go, and we have a very good time. That's what's important, just what you said, focus on doing nice things and making them feel loved and hopeful. And don't forget to take care of you!
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I have been noticing that a lot of the caregivers I have taken notice to lately, seem to generally only express their helplessness toward their inability to help their sick spouses/family members in public. I don't mean to sound insensitive or anything as I am not yet a legal caregiver but hope to be one to Angie someday. I was wondering if this is the normal everyday life of a caregiver or do caregivers also try to make their spouses/family members days brighter by focusing on doing nice things and making them feel loved and hopeful?
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 personally don't ever want to add to Angie's stress but I don't want her to think that I am not taking her illness seriously, because I am. I really want to do anything I can to put her depression to rest.
I am hoping to open this up for discussion and I want to hear everyones opinions.
Well, I am FAR from "helpless" as you put it. ::)
I personally don't ever want to add to Angie's stress
Well then a good start would be to not let her think you think of her as being "sick and helpless" I know it would depress the shit out of me if my wife thought of me as "sick and helpless".
- Epoman
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I have been noticing that a lot of the caregivers I have taken notice to lately, seem to generally only express their helplessness toward their inability to help their sick spouses/family members in public. I don't mean to sound insensitive or anything as I am not yet a legal caregiver but hope to be one to Angie someday. I was wondering if this is the normal everyday life of a caregiver or do caregivers also try to make their spouses/family members days brighter by focusing on doing nice things and making them feel loved and hopeful?
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 personally don't ever want to add to Angie's stress but I don't want her to think that I am not taking her illness seriously, because I am. I really want to do anything I can to put her depression to rest.
I am hoping to open this up for discussion and I want to hear everyones opinions.
Well, I am FAR from "helpless" as you put it. ::)
I personally don't ever want to add to Angie's stress
Well then a good start would be to not let her think you think of her as being "sick and helpless" I know it would depress the shit out of me if my wife thought of me as "sick and helpless".
- Epoman
I don't think of any patient as sick and helpless Bill but it is a constant reminder from the patients themselves that think they are just that when they want to do something but can't because of their limitation. I feel it is my job to help Angie see the good things in life that she can do and still enjoy.
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Even though the stress is sometimes overwhelming, there are things that we have learned that we would not have learned had he never become sick like this. We have learned to appreciate every little thing. Things we had missed before, like the little birds sitting at the bird feeder, we were at the table watching a mama bird feeding her baby. Had he not been sick, we wouldn't have been sitting at the table talking. I also think our relationship is so much stronger because of all this. Maybe it is because of what everybody has said and we are very dependent on each other to get through the days. But previous to this, we didn't take the time that we do now. Just cuddling on the couch means so much more than ever. I wouldn't trade these things for anything else in the world and it's sad that it took Renal failure to wake us up to see the world at a slower speed. We've been married 23 years, he's been very sick for the last 7 and really housebound for the last 3. There isn't a thing in the world I wouldn't do for him, but when he is suffering, especially as he has been lately, it breaks my heart. That is when I'm most likely to cry and dwell on everything. I just become so confused and depressed over the very bad parts. I'm really trying to keep my spirits up over the upcoming surgery. Which I just found out may be moved up quickly because of some major problems.
So, I don't mean to sound like I've given up hope. As long as we still breathe, there is hope. I just wish (as everyone does) that I had a magic wand and could cure him completely so he could again enjoy a lot of things that he can't do anymore, like hiking. We have a state forest near us and can take his automatic wheelchair in there on the flatlands and our daughter and her boyfriend bought him a fishing rod so that they can take him fishing next spring.
This is such a confusing disease for all involved that we do exactly as KitKatz said, normal now means what ever fits into that moment.
Sometimes I don't word things just right and it comes out a little weird, I'm hoping this comes off right and not that I've thrown in the towel. I just try. That's the best I can offer. But you have all been wonderful, I've learned so much and it's refreshing to communicate with people that know how you feel and really understand. This is the best site I've ever found!
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Amen Kitty Cat, AAAAAAMEN!!! This post says it all for me too, especially the part about appreciating every "little" thing, things that i wouldnt of noticed before. Yep yep, you are definetly singing my song....and as for this being the best site you found, we are glad you found it too and that deserves another AAAAAMEN!!! :2thumbsup;
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I am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! :thumbup;
I just wanted to clarify that he isn't saying dialysis patients are helpless, but I think he just meant in the future if my health gets worse (I don't consider it that bad right now as I am stable, I can walk, work and my labs are pretty stable).
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Sometimes I don't word things just right and it comes out a little weird, I'm hoping this comes off right and not that I've thrown in the towel. I just try. That's the best I can offer. But you have all been wonderful, I've learned so much and it's refreshing to communicate with people that know how you feel and really understand. This is the best site I've ever found!
I'm glad that you can come here and explain the good and the bad that goes along with kidney disease, you're a special person (plain and simple) to be able to be a caretaker, it's no easy task to perform sometimes. Your caring, Love and compassion speaks in volumes, there is nothing weird about the way you word things. It's hard sometimes to put into words ones own feelings. You did a fine job.
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I am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! :thumbup;
I just wanted to clarify that he isn't saying dialysis patients are helpless, but I think he just meant in the future if my health gets worse (I don't consider it that bad right now as I am stable, I can walk, work and my labs are pretty stable).
Let me quote Jeff:
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.
Then he says this:
I don't think of any patient as sick and helpless Bill but it is a constant reminder from the patients themselves that think they are just that when they want to do something but can't because of their limitation.
And again, I will say I have NEVER thought of myself as helpless, sick yes helpless, NO. Plus I would say that the majority of our members are pretty strong and not helpless at all. Members like Goofynina, Sluff, Bajanne, Rerun, Zach, Kitkatz, Panda_9, and many, many others come to mind. So I am not sure what Jeff means when he says "it is a constant reminder from the patients themselves" Hell I have been in a wheelchair for 6 years and I hate it, but I do not think of myself as helpless. How many "patients" does Jeff know to make such a bold statement?
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?
Because I feel the last thing that a sick person ever wants to feel is "Helpless" and when they do reach that level, then they have lost their will and fight. I know that is why I do all that I do, even when I am sick and feel like crap.
- Epoman
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I am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! :thumbup;
I just wanted to clarify that he isn't saying dialysis patients are helpless, but I think he just meant in the future if my health gets worse (I don't consider it that bad right now as I am stable, I can walk, work and my labs are pretty stable).
Let me quote Jeff:
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.
Then he says this:
I don't think of any patient as sick and helpless Bill but it is a constant reminder from the patients themselves that think they are just that when they want to do something but can't because of their limitation.
And again, I will say I have NEVER thought of myself as helpless, sick yes helpless, NO. Plus I would say that the majority of our members are pretty strong and not helpless at all. Members like Goofynina, Sluff, Bajanne, Rerun, Zach, Kitkatz, Panda_9, and many, many others come to mind. So I am not sure what Jeff means when he says "it is a constant reminder from the patients themselves" Hell I have been in a wheelchair for 6 years and I hate it, but I do not think of myself as helpless. How many "patients" does Jeff know to make such a bold statement?
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?
Because I feel the last thing that a sick person ever wants to feel is "Helpless" and when they do reach that level, then they have lost their will and fight. I know that is why I do all that I do, even when I am sick and feel like crap.
- Epoman
Okay. You want my reply? Here it goes.....
First off, I don't think that this message was called for. Everyone else who replied to this thread didn't take any offense to what I said because no offense was intended. Sure, maybe I could have worded my statement better but what is done, is done. Maybe a statement of "feeling helpless" would have been better? You have been on dialysis for quite some time Bill and do you mean to tell me that over all these years, you have not felt one day of helplessness? I know I sure as hell have and I'm not a patient or even a legal caregiver yet. Seriously Bill, how did you feel when you were first diagnosed with kidney disease?
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Okay, I have to say that I feel sick and/or helpless sometimes. I work full time, usually about 50 hours a week. I'm active in my church and in my community, I travel, I have a great life, but, I do have bad days. I don't know if it's because of the vasculitis or the kidney failure, but I do have days and times when I feel helpless and even hopeless. For instance, I feel helpless that I can't move my PD solution boxes because I can't lift them. I used to be able to lift that much, but now I can't and someone has to move them for me. I feel helpless when I need something from my basement, but because I can't make it back up the 14 stairs to the basement someone has to get it for me. It makes me feel bad that my team at work has to find a conference room that is close to our work area (or at least on the same floor) because it's hard for me to walk a long way to a meeting. I feel helpless on the days that I'm having a bad day and my sister has to do the grocery shopping because I can't walk that far, so I wait in the car.
Sometimes I feel hopeless, for instance, the day my doctor told me I couldn't have a kidney transplant unless I could get my vasculitis into remission so that they could take me off the medication for it. I felt hopeless when they were changing the insurance I have at work and I thought I would have to pay more for my medication than my total monthly salary. I felt scared, and a little hopeless, the day I started dialysis and the social worker gave me the forms for my living will and advance directives.
I'm not speaking for Sandman, but I understood his post to mean that he wants to make Angie's life as good and as positive as possible, in spite of her illness, however the illness makes her feel.
Maybe the rest of you never feel helpless, but I sure have times when I do. And the things that help me are that when I am able to do something, I do it. Also, there are things that are my responsibility that are never my sisters responsibility, for example, taking care of my dad's medications. And, my sister does everything she can to keep a positive attitude, even when mine isn't. The day the doctor told me he didn't think I would get a transplant because of the vasculitis and the med's I'm on, she kept reminding how well I've done with the vasculitis and how much my med's had already changed and kept reassuring me that someday I would get a transplant. I needed that. I needed someone to believe the best and to tell me that it would be okay, because, right at that moment, I didn't think it would be.
Having vasculitis, and the kidney and lung problems that have resulted from it, has had a very significant impact on my life. I deeply appreciate those in my life that are helping me get through all my days, the good and the bad ones.
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And, my sister does everything she can to keep a positive attitude, even when mine isn't. The day the doctor told me he didn't think I would get a transplant because of the vasculitis and the med's I'm on, she kept reminding how well I've done with the vasculitis and how much my med's had already changed and kept reassuring me that someday I would get a transplant. I needed that. I needed someone to believe the best and to tell me that it would be okay, because, right at that moment, I didn't think it would be.
Having vasculitis, and the kidney and lung problems that have resulted from it, has had a very significant impact on my life. I deeply appreciate those in my life that are helping me get through all my days, the good and the bad ones.
Mallory, that is the most perfect response to what Jeff was asking! Thank you! :cuddle;
There are days I feel helpless as well like when my energy drops and the weather is bad out and I am sick from biking in the rain or snow. Or when my BP drops at dialysis and I can't seem to push that darned door open when I go out to the cab and the cab driver doesn't open the door for me because he sees me as a young healthy girl who can do it myself. Sometimes I get depressed at how I was getting somewhere in my career and then lost it all and had to claim bankruptcy. But Jeff encourages me every day and gives me hope! Jeff is amazing and makes me took to the future instead of dwelling on the past!
We definately couldn't do this alone could we? We DO need the people in our lives to help us out and be there for us! I find what helps me is when Jeff (or anyone for that matter) lets me go off and bitch like I do. I can be a very grumpy person not happy with anything .. but as long as I have my time to vent then I feel better and am instantly a more cheerful person. It really does help.
Thank you to all caregivers who understand :cuddle;
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I am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! :thumbup;
I just wanted to clarify that he isn't saying dialysis patients are helpless, but I think he just meant in the future if my health gets worse (I don't consider it that bad right now as I am stable, I can walk, work and my labs are pretty stable).
Let me quote Jeff:
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.
Then he says this:
I don't think of any patient as sick and helpless Bill but it is a constant reminder from the patients themselves that think they are just that when they want to do something but can't because of their limitation.
And again, I will say I have NEVER thought of myself as helpless, sick yes helpless, NO. Plus I would say that the majority of our members are pretty strong and not helpless at all. Members like Goofynina, Sluff, Bajanne, Rerun, Zach, Kitkatz, Panda_9, and many, many others come to mind. So I am not sure what Jeff means when he says "it is a constant reminder from the patients themselves" Hell I have been in a wheelchair for 6 years and I hate it, but I do not think of myself as helpless. How many "patients" does Jeff know to make such a bold statement?
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?
Because I feel the last thing that a sick person ever wants to feel is "Helpless" and when they do reach that level, then they have lost their will and fight. I know that is why I do all that I do, even when I am sick and feel like crap.
- Epoman
Okay. You want my reply? Here it goes.....
First off, I don't think that this message was called for. Everyone else who replied to this thread didn't take any offense to what I said because no offense was intended. Sure, maybe I could have worded my statement better but what is done, is done. Maybe a statement of "feeling helpless" would have been better? You have been on dialysis for quite some time Bill and do you mean to tell me that over all these years, you have not felt one day of helplessness? I know I sure as hell have and I'm not a patient or even a legal caregiver yet. Seriously Bill, how did you feel when you were first diagnosed with kidney disease?
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, but I was not as you put it:
helpless for the rest of their lives and that there is nothing that can be done to change that.
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.
Sorry Jeff, but I took some offense to some of your comments, and one of those comment in particular:
helpless for the rest of their lives and that there is nothing that can be done to change that.
If you are a fighter there is ALWAYS something that can be done to "change that" you made it seem by this comment:
but it is a constant reminder from the patients themselves that think they are just that.
That this site is full of helpless, poor patients and all we do is sit around and feel sorry for ourselves. You also mentioned in your latest reply:
Everyone else who replied to this thread didn't take any offense to what I said because no offense was intended.
Well, if you notice Jeff, I had stayed out of this thread when you originally posted it several days ago, (Check the dates) because I figured it was just me who took it the wrong way, but after receiving 4 PM's from ACTIVE members stating that they were upset that you think of them as depressed, helpless, hopeless and "there is nothing they can do to change that" I decided to step up and speak for them. Just because people do not reply here does not mean you did not upset them. Some people just do not want to be confrontational, me personally I have no problem speaking up. So yes Jeff my reply was indeed "CALLED FOR".
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.
I know I sure as hell have and I'm not a patient or even a legal caregiver yet
I am not yet a legal caregiver but hope to be one to Angie someday.
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
And to "Mallory" you are an amazing person. You are a fighter, and this quote proves it.
I work full time, usually about 50 hours a week. I'm active in my church and in my community, I travel, I have a great life, but, I do have bad days.
You have every right to have one of those "days", hell even "weeks". I too feel hopeless sometimes, but that is a big difference than feeling helpless, which even I feel sometimes. I have not walked in about 6 years but I am still applying to be a coach for my sons basketball team again this year.
I'm not speaking for Sandman, but I understood his post to mean that he wants to make Angie's life as good and as positive as possible, in spite of her illness, however the illness makes her feel.
I understand that too, but my reply above will explain my feelings. I just feel he thinks "poor helpless Angie, I need to help her, she needs me to continue" I think he needs to think about being her husband first and caregiver second. As I stated above you never know in life, she may be HIS caregiver FIRST.
- Epoman
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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.
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I'm not speaking for Sandman, but I understood his post to mean that he wants to make Angie's life as good and as positive as possible, in spite of her illness, however the illness makes her feel.
You did understand exactly what I was aiming for. Thank you.
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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 :twocents; but there may be better ways to react here.
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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
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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 :twocents; but there may be better ways to react here.
Exactly! No need for anyone to get offended! :cuddle;
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! :thumbup;) 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?
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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
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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! :cuddle; You are TRULY an Inspiration to us all!
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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.
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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. :grouphug;
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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. :grouphug;
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
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Bill, do you have some sort of resentment toward me or is it all healthy people?
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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
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My :twocents;
I AM NOT HELPLESS
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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 :twocents; 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.
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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?
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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.
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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
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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!
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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. :thumbup; You are very diplomatic. ;)
- Epoman
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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! :cuddle;
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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! :cuddle;
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. :-[ ;D This site is here for YOU!
- Epoman
UPDATE: Well thank you! Your account has been updated, you are now a "Premium Member" :thumbup; - Epoman
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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! :)
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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. :grouphug;
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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!
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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?
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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.
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THREAD LOCKED per Jeff and Angies request. - Epoman, Owner/Admin