Dear Dave:
Thank you ever so much for sharing your story of coping/living with your wife's breast cancer situation. What you wrote hit home for me EXACTLY in that you wrote about those "internal questions", the biggies, and both sides of the staying/leaving scenario, which I have been struggling very hard with. It also helps that you're writing from 7 years experience. I've just passed through 7 years of grieving experience over the loss of my son and just the exact 7 year date (Jan. 28, 2009) was the date my husband was thrown out of hospital after having been diagnosed with his End Stage Renal Disease (ESRD), so now I'm into this, as you say, "new normal", which was very hard for me since I had already been learning a "new normal" for the past 7 years since my son died, now I'm having to learn yet and still ANOTHER "new normal". So, I can REALLY identify/relate to everything you wrote, including the 7 points you made. I've been keeping active with my "recovery/self-work" and was already trying to focus on/remember these things you wrote about (concentrating/focusing on myself, finding "other things/people" to do things with, making jokes (which we do since my husband has the epitome of British humour, very droll and dry), also not ALWAYS talking about the situation with people, trying to look for the "good things" (I make a grateful list often), and your point 7 which was "compassion fatigue" was a good one I had not yet realized, but this shed a LOT of light on the situation (by giving it a "name", even if I was sort of aware of it). Your post has helped me to focus more on the side of "staying" and "adjusting to it" (acceptance IS the "final stage of grief", grief being a "loss of any type" and our situation is a loss of a LOT of things both tangible and intangible", thus yet and still ANOTHER grief process, which I acknowledge, but I'm not sure HE does, although that's HIS prerogative, not mine, I can't MAKE him "deal with this", I can only let him know what I can/cannot "live with" on his part, thus holding HIM responsible for what he CAN do, as I don't expect him to do what he can't). I still am not entirely comfortable with the situation and admit I am not to the point of total acceptance, but your post helped me to see the side of "staying in it" and what I can do to make it better for myself (as I don't consider myself or like to be in "victim mentality"). I know he "feels bad" about having ESRD, but I'm not the one who is making him feel bad, that's something he's having to work out for himself. I am HERE and don't throw that against him. I've been trying to work out what's best for me since no one else can/will do that. I do think I've been doing all the "right stuff" since we found this out, and again, your post helped me to see both sides again (staying or leaving) and yes, it IS about the "consequences" (mental, moral, emotional, even financial, other people, regrets, guilt, doing what's right or "what is right", etc.). It's been complicated. It still is; however, your post states how we as the spouse/caretaker can "make the best of it" if we decide to stay in it. The biggest thing for me is about being able to "live with myself", so when I saw you wrote those words, this whole post really hit me spot on. I've tried to get more to a point in my life where I don't care so much "what people think"; however, no matter how hard I've tried, there still is a part of me that does care; i.e., I still think I probably would have at least a bit of a problem taking criticism, negative comments, unwanted advice, comments, etc. from people who wouldn't/couldn't understand, but I also think, at the end, if I deemed it absolutely necessary that I should leave in order to "save myself" mentally/emotionally/psychologically (due to whomever/whatever triggers my clinical depression/panic/anxiety/PTSD symptoms to a bad enough degree to a point where I am becoming dysfunctional or less-to-non functional), then I would have to also be able to tolerate the nay-sayers in any case, in order to save myself from destruction, at the same time not allowing anything/anyone to affect me that badly in the first place (hence, your "suggestions" on how to cope). I know that I will try EVERYTHING I can possibly do FIRST before I would/could be able to (still) think about being able to leave. For us, it's also financial which is another factor altogether, that just complicates the situation even further. But for me, it's more emotional even than the money part because I'm not really a materialistic person, although I realize I must be able to "take care of myself" in my later years (I was 53 on May 15, but at least I'm in good health). But also because of age discrimination and the economy, I feel I don't have much choice either. I am now fighting not feeling STUCK, which is another angle to this situation. I am fighting not feeling as if HE is the one who's "getting everything his way" on this whole situation, whereas I am NOT (or else I would be gone, back to that again). So that is back to where I'm looking at your 7 points and seeing that's what I've been trying to focus on, especially now that he's let up on me from his bad attitude, which allows me to focus more on "how to stay in it". That's why I wrote in the other post to lady pa that if he starts acting nasty again, I will AGAIN want to leave. I'm also looking into whether or not that's MY issue to deal with (not being able to tolerate nastiness from a sick person or whether I should take nastiness from a sick person or a well person, doesn't matter, the point being I don't want to take crap off ANYONE anymore in my life, no matter what the reason is). So, this is a long, drawn out process for me, which I guess it is for anyone who actually cares enough to even debate on whether to stay or not. I say we are caring people already and that it shouldn't make us BAD for wanting to leave, because if we didn't care, we would have just already left, and not even debated about it. If I just jumped up and did what I wanted, I would've just left and got out of it already or would've already made up my mind and just done it or made plans on how to do it seriously. For me this is venting about all the ways I feel and trying to sort out what's best for me, since he has already GOT what's best for him, which is that he has 100% treatment that I got worked out for him, he gets to stay in USA and live where he wants, and with a wife who looks after him very well and supports him. Me? I'm trying to find my way in all this. Thank you for your post. I am currently in that frame of mind, trying to focus on the positive because I'm "still in this". I still can't say whether or not I have totally decided to stay forever-- I just can't seem to get to that point right now, but I will take my time and I will wait and see and give myself (and him) time to adjust more and see how things go. Maybe this is a "commitment" issue for me, I'm not sure. I'm trying to find out what issues in this situation are MINE to work on as well (I don't focus on his, I have enough dealing with myself). I meet my responsibilities, I help him, I do everything I can. I don't deny or run. I'm here whether I like it or not. Your points help me to see a better side of things while I'm IN this. I wonder if I will ever get to the point where I can 100% accept that I'm in this "until the end". I have a problem with not "being in love with him", and I'm not trying to "wish myself into it". I try to stay in REALITY. I KNOW things will never be the same again and I can accept that part of it. I guess there's more for me to accept (or not?) Maybe I don't want to accept it? It's hard for me to accept that I will have to deal with him/this for the rest of my life when it's not what I wanted at all (of course no one wants this). I ask myself SO many questions. I wonder if this "is it" for me, if this is "my lot in life", so I better just get used to it and get on with it and accept it. I think ACCEPTANCE seems to be a key word for me and I guess I'm just not ready to accept that THIS is going to be my life from here on out. I'm good at adjusting and "making the most of things"-- I had to do that my entire life, I guess I just got tired and burned out from doing it.
Thank you for sharing your experience,
New Nan, Texas
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Dear Dave:
May 18, 2009 - 11:56amThank you ever so much for sharing your story of coping/living with your wife's breast cancer situation. What you wrote hit home for me EXACTLY in that you wrote about those "internal questions", the biggies, and both sides of the staying/leaving scenario, which I have been struggling very hard with. It also helps that you're writing from 7 years experience. I've just passed through 7 years of grieving experience over the loss of my son and just the exact 7 year date (Jan. 28, 2009) was the date my husband was thrown out of hospital after having been diagnosed with his End Stage Renal Disease (ESRD), so now I'm into this, as you say, "new normal", which was very hard for me since I had already been learning a "new normal" for the past 7 years since my son died, now I'm having to learn yet and still ANOTHER "new normal". So, I can REALLY identify/relate to everything you wrote, including the 7 points you made. I've been keeping active with my "recovery/self-work" and was already trying to focus on/remember these things you wrote about (concentrating/focusing on myself, finding "other things/people" to do things with, making jokes (which we do since my husband has the epitome of British humour, very droll and dry), also not ALWAYS talking about the situation with people, trying to look for the "good things" (I make a grateful list often), and your point 7 which was "compassion fatigue" was a good one I had not yet realized, but this shed a LOT of light on the situation (by giving it a "name", even if I was sort of aware of it). Your post has helped me to focus more on the side of "staying" and "adjusting to it" (acceptance IS the "final stage of grief", grief being a "loss of any type" and our situation is a loss of a LOT of things both tangible and intangible", thus yet and still ANOTHER grief process, which I acknowledge, but I'm not sure HE does, although that's HIS prerogative, not mine, I can't MAKE him "deal with this", I can only let him know what I can/cannot "live with" on his part, thus holding HIM responsible for what he CAN do, as I don't expect him to do what he can't). I still am not entirely comfortable with the situation and admit I am not to the point of total acceptance, but your post helped me to see the side of "staying in it" and what I can do to make it better for myself (as I don't consider myself or like to be in "victim mentality"). I know he "feels bad" about having ESRD, but I'm not the one who is making him feel bad, that's something he's having to work out for himself. I am HERE and don't throw that against him. I've been trying to work out what's best for me since no one else can/will do that. I do think I've been doing all the "right stuff" since we found this out, and again, your post helped me to see both sides again (staying or leaving) and yes, it IS about the "consequences" (mental, moral, emotional, even financial, other people, regrets, guilt, doing what's right or "what is right", etc.). It's been complicated. It still is; however, your post states how we as the spouse/caretaker can "make the best of it" if we decide to stay in it. The biggest thing for me is about being able to "live with myself", so when I saw you wrote those words, this whole post really hit me spot on. I've tried to get more to a point in my life where I don't care so much "what people think"; however, no matter how hard I've tried, there still is a part of me that does care; i.e., I still think I probably would have at least a bit of a problem taking criticism, negative comments, unwanted advice, comments, etc. from people who wouldn't/couldn't understand, but I also think, at the end, if I deemed it absolutely necessary that I should leave in order to "save myself" mentally/emotionally/psychologically (due to whomever/whatever triggers my clinical depression/panic/anxiety/PTSD symptoms to a bad enough degree to a point where I am becoming dysfunctional or less-to-non functional), then I would have to also be able to tolerate the nay-sayers in any case, in order to save myself from destruction, at the same time not allowing anything/anyone to affect me that badly in the first place (hence, your "suggestions" on how to cope). I know that I will try EVERYTHING I can possibly do FIRST before I would/could be able to (still) think about being able to leave. For us, it's also financial which is another factor altogether, that just complicates the situation even further. But for me, it's more emotional even than the money part because I'm not really a materialistic person, although I realize I must be able to "take care of myself" in my later years (I was 53 on May 15, but at least I'm in good health). But also because of age discrimination and the economy, I feel I don't have much choice either. I am now fighting not feeling STUCK, which is another angle to this situation. I am fighting not feeling as if HE is the one who's "getting everything his way" on this whole situation, whereas I am NOT (or else I would be gone, back to that again). So that is back to where I'm looking at your 7 points and seeing that's what I've been trying to focus on, especially now that he's let up on me from his bad attitude, which allows me to focus more on "how to stay in it". That's why I wrote in the other post to lady pa that if he starts acting nasty again, I will AGAIN want to leave. I'm also looking into whether or not that's MY issue to deal with (not being able to tolerate nastiness from a sick person or whether I should take nastiness from a sick person or a well person, doesn't matter, the point being I don't want to take crap off ANYONE anymore in my life, no matter what the reason is). So, this is a long, drawn out process for me, which I guess it is for anyone who actually cares enough to even debate on whether to stay or not. I say we are caring people already and that it shouldn't make us BAD for wanting to leave, because if we didn't care, we would have just already left, and not even debated about it. If I just jumped up and did what I wanted, I would've just left and got out of it already or would've already made up my mind and just done it or made plans on how to do it seriously. For me this is venting about all the ways I feel and trying to sort out what's best for me, since he has already GOT what's best for him, which is that he has 100% treatment that I got worked out for him, he gets to stay in USA and live where he wants, and with a wife who looks after him very well and supports him. Me? I'm trying to find my way in all this. Thank you for your post. I am currently in that frame of mind, trying to focus on the positive because I'm "still in this". I still can't say whether or not I have totally decided to stay forever-- I just can't seem to get to that point right now, but I will take my time and I will wait and see and give myself (and him) time to adjust more and see how things go. Maybe this is a "commitment" issue for me, I'm not sure. I'm trying to find out what issues in this situation are MINE to work on as well (I don't focus on his, I have enough dealing with myself). I meet my responsibilities, I help him, I do everything I can. I don't deny or run. I'm here whether I like it or not. Your points help me to see a better side of things while I'm IN this. I wonder if I will ever get to the point where I can 100% accept that I'm in this "until the end". I have a problem with not "being in love with him", and I'm not trying to "wish myself into it". I try to stay in REALITY. I KNOW things will never be the same again and I can accept that part of it. I guess there's more for me to accept (or not?) Maybe I don't want to accept it? It's hard for me to accept that I will have to deal with him/this for the rest of my life when it's not what I wanted at all (of course no one wants this). I ask myself SO many questions. I wonder if this "is it" for me, if this is "my lot in life", so I better just get used to it and get on with it and accept it. I think ACCEPTANCE seems to be a key word for me and I guess I'm just not ready to accept that THIS is going to be my life from here on out. I'm good at adjusting and "making the most of things"-- I had to do that my entire life, I guess I just got tired and burned out from doing it.
Thank you for sharing your experience,
New Nan, Texas
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