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.
I personally don't ever want to add to Angie's stress
Quote from: sandmansa on December 29, 2006, 11:55:00 PMI 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. QuoteI personally don't ever want to add to Angie's stressWell 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
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 am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! 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).
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 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.
Quote from: angieskidney on January 03, 2007, 07:11:36 PMI am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! 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:QuoteI 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:QuoteI 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
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.
Quote from: Epoman on January 03, 2007, 07:58:40 PMQuote from: angieskidney on January 03, 2007, 07:11:36 PMI am touched that Jeff is thinking so far into the future! Thanks everyone for giving him advice! 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:QuoteI 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:QuoteI 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. - EpomanOkay. 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?
helpless for the rest of their lives and that there is nothing that can be done to change that.
but it is a constant reminder from the patients themselves that think they are just that.
Everyone else who replied to this thread didn't take any offense to what I said because no offense was intended.
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.
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'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.
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