Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 Peggy... I know that wasn't easy to post with a different opinion and I too think Kerry is right with a few exceptions. None of us (I don't think) harbor dislike for ANY caregiver per se and we acknowledge (I'm sure) what a difficult burden they bear. We watch them, as they watch us and we see them decline as well and we know, we are the cause of their worry, health issues, extra work, loss of sleep, financial concerns, fear and on and on. We need to be able to talk about these concerns without worry of hurting a CGs feelings. I think when a caregiver has questions about IPF that cannot be answered elsewhere, (board files or internet) or needs particular insight into "what did you do when this happened..." sort of thing, or explanation about certain testing...on and on. Whatever pertains particularly to IPF and/or the many strains. To check in mainly for information and a little visit of course...some of us know each other from both boards. There is always a personal inbox to socialize and intermingle. There are gatherings where CG and 'patients' meet and mingle. At the last gathering one of the CG made no bones about the fact that "patients weren't invited!" So even the CG feel the need for time away from US. Maybe not like that one however. When a person needs information there is nothing like getting it from a person who knows first-hand. I also think it's good for a CG to be with other CGs and not always with those of us who are sick and progressing and hurting and dealing with side effects of this damn disease. Often dealing with our fears and the need to vent. It's depressing I would think, for one who does not need to hear it on a daily basis. We can't get away from it. I think a CG would desire to be on a board trying to deal with solutions and not on a board dealing with problems. I think for a caregiver to give advice to a person on our board is inappropriate, the CG usually comes to us for information not the other way around. As you put it so well Peggy, we here on the board have the "get it" factor (is that not present on the CG board?) and there are many situations where one of us on the board doesn't even think of something that another "IPfer" replies back with. A CG doesn't have that insight for us. The CG board was established for a reason for those who need that support. If the CG board is not all it should be, then CGs need to improve it so it is welcoming and instructional. ~~~~~ I'm just throwing 'something' out here, I don't know how the CG board is, only what I've read here.~~~~ Ask for help to improve the CG board from Leanne or Beth. Kerry, I respectfully disagree with you saying we "cut of someone else's lifeline". For the CG, their 'lifeline' ought to be the CG board! Those are the people who live daily with what other CGs live with. An analogy is AA and Ala-Non. CGs too, sadly, have to learn to live with what they cannot change. They learn it from each other hopefully. You also mention " a forum where it's not going to suit all exactly"... I think that is my point at least. If we each have a forum then hopefully we each fill a need with love and understanding. You're right Peggy, it is a tough decision. Love to all. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: Caregivers Kerry, I agree with you to a point. These sites are for each group to have a place of support, venting and VERY important information. There is information we share here that the CG's would not really understand it is the GET IT factor. The CG site is different in that they air their feelings about the loved one they are caring for. There are some that resent the lot they have been given. I don't want to see, read or feel all that. It breaks my heart to think might have ONE of those thoughts. SO all that to say this. I am not so sure we should mix it up to much. It is a hard disesion. One I don't want to make. But if that stuff were on this board I couldn't stay. I am just at a weak point and thats my feelings.. Now I'll set back and get ready for the back lash on this one.. sorry Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand... go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 ... I think it's great that Sharon does what she does and gets what she gets for both of you. We never know she is around however. Think about it. I hope she may be sharing her knowledge with the CG board. Thanks for the funnies again. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! CaregiversTo: Breathe-Support Date: Thursday, June 5, 2008, 3:57 AM This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2008 Report Share Posted June 5, 2008 whre is this? Joy in Seattle > > From: Kerry kerrygeron@... > Subject: Caregivers > To: Breathe-Support > Date: Thursday, June 5, 2008, 3:57 AM > > > > > > > This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand.. . go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline. > > Apologies in advance for not holding my tongue, > Kerry > 37 IPF '01 S. IN > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sher, The reason my wife is "invisible" is that I am still capable of using my computer---- not so, for some of the board members. One of the thing that my wife did suggest to me was that she thought there should be a seperate BOARD FOR MEN. I don't know for sure, maybe Leanne would, but there are more men with PF than women (for every 10 men there are 6 women). The caregivers that are excluded now, all represent men as far as I can tell--and they don't seem to be able to comunicate with us. I do think that men have some different issues with the disease tham women do. Therefore when K. and Teri, start talking I LISTEN, --there feeling are very important to me and I think most other men. When Don Grunts and groans and Complains about it----it sends a signal to me about how to treat my wife-------I get more value out of that than I do out of some of the other dialogue that transpires on the site-----BUT, I can delete what I don't want to "hear" and by the same token other people on the board can take the trivial talk and E-mail it to each other and then we will all be happy---RIGHT??? We all can delete what and who we don't want to deal with---so whats the problem???? G. UIP/IPF 5/07 AZ. From: Kerry <kerrygeronyahoo (DOT) com>Subject: CaregiversTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 5, 2008, 3:57 AM This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Kerry, I am reading posts from back to front....I read magazines that way too....? I wish that I had read this post before I made my feeble attempt to comment. This effort coming from you just means so much. Here you are a virtual baby looking transplant square in the face.....with all the emotional stress that must bring....and you take time to compose this post. You said it all. I agree....enough already! No place for this stuff here. I am trying to die and fighting like a bear not to die....stuff like this is nonsense! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> This may be exactly what you are hoping to avoid by simply asking > for people to answer an anonymous poll. However, hours after voting > I have logged back on because I just am so bothered by the question > that I must say something. I can't imagine turning people away who > care that much about their loved ones that they would bother to be > part of our forum. I'm sure the caregivers side offers a lot. I > can imagine the value of a place where they can go to discuss topics > near and dear to their hearts and help them in their roles. That > said, there is just nothing like our forum to really get at the > heart of it. Sure there's a lot of side topics, sillyness and > sharing and that's based on the friendships we have built up and > just to help us all get thru the day and because you have to focus > on more than just being sick. That said the actual info shared here > may not be found anywhere and I mean anywhere else. For those > wonderful people who are desperately trying to understand what their > loved ones diagnosed w/ this are going thru... my God to turn them > away, I can't imagine. For those that aren't computer savy or who > can't sit at the computer or don't have the access, how do we cut > them off when they have someone who will be their go between. Not > to mention what we have gained from them. I so value having met > Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of > Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for > Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for > Jon, for Don. Gretel, Joanie and Cyndi were some of my most > favorite people when I first started posting. To see the love > Joanie has for Bud, that's a tribute and something I feel honored to > have witnessed. Cyndi told me once that my excursions encouraged > her Dad to do their trip to Yosemite and that in turn helped > encourage me to go to Hawaii. The caregivers on this site have > helped me understand some of the challenges my husband has and some > of the fear he must hide and some of the frustration too! I'm not > saying I want to combine the sites, but for those that are here I > think it's important for their loved ones and for us too. For > anyone who feels that they don't belong, why does it hold you back > from complaining about how your caregiver doesn't understand... go > for it, complain they're not on here fire away. If you feel they > don't understand how we feel, no of course they don't but they're > here for a very important reason. They're not Joe Schmo off the > street, they are not conducting a survey. They are Caregivers they > are the loved ones of people just like us and they are absolutely > fighting this monster too. This is a forum trying to help a very > large group of people it's not going to suit all exactly. It has > been said before if you don't like the jokes delete or don't read > them, if you don't like the off topics filter or search, if you only > want to read things that apply to you use the search I mentioned. > If you don't want to communicate w/ someone on here, then don't. > Don't battle w/ people you don't think should be here, just be in > your own space in this place and don't cut off someone else's > lifeline.> > Apologies in advance for not holding my tongue,> Kerry> 37 IPF '01 S. IN> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Peggy, I would agree with your comment that if those who feel they should not be saddled with the burden of caring for someone with this disease were to unwind here it would be devistating. Having had a significant other leave due to the disease I speak with some degree of understanding. I would hope that those people would not be so calcus as to unload here but should that happen we could ask them to leave. That seems like a better avenue than keeping out all care givers. Just some short thoughts. Fay IPF06/06 IL Re: Caregivers Kerry, I agree with you to a point. These sites are for each group to have a place of support, venting and VERY important information. There is information we share here that the CG's would not really understand it is the GET IT factor. The CG site is different in that they air their feelings about the loved one they are caring for. There are some that resent the lot they have been given. I don't want to see, read or feel all that. It breaks my heart to think might have ONE of those thoughts. SO all that to say this. I am not so sure we should mix it up to much. It is a hard disesion. One I don't want to make. But if that stuff were on this board I couldn't stay. I am just at a weak point and thats my feelings.. Now I'll set back and get ready for the back lash on this one.. sorry Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. This may be exactly what you are hoping to avoid by simply asking for people to answer an anonymous poll. However, hours after voting I have logged back on because I just am so bothered by the question that I must say something. I can't imagine turning people away who care that much about their loved ones that they would bother to be part of our forum. I'm sure the caregivers side offers a lot. I can imagine the value of a place where they can go to discuss topics near and dear to their hearts and help them in their roles. That said, there is just nothing like our forum to really get at the heart of it. Sure there's a lot of side topics, sillyness and sharing and that's based on the friendships we have built up and just to help us all get thru the day and because you have to focus on more than just being sick. That said the actual info shared here may not be found anywhere and I mean anywhere else. For those wonderful people who are desperately trying to understand what their loved ones diagnosed w/ this are going thru... my God to turn them away, I can't imagine. For those that aren't computer savy or who can't sit at the computer or don't have the access, how do we cut them off when they have someone who will be their go between. Not to mention what we have gained from them. I so value having met Cyndi (and by her, knowing her huggy teddy bear of a Dad), Joanie of Joanie and Bud, Gretel of Gretel and Bob, Sheila and her Mom for Bobby, Vrinda, Joanie and Joe, Teri does most the communicating for Jon, for Don. Gretel, Joanie and Cyndi were some of my most favorite people when I first started posting. To see the love Joanie has for Bud, that's a tribute and something I feel honored to have witnessed. Cyndi told me once that my excursions encouraged her Dad to do their trip to Yosemite and that in turn helped encourage me to go to Hawaii. The caregivers on this site have helped me understand some of the challenges my husband has and some of the fear he must hide and some of the frustration too! I'm not saying I want to combine the sites, but for those that are here I think it's important for their loved ones and for us too. For anyone who feels that they don't belong, why does it hold you back from complaining about how your caregiver doesn't understand.. . go for it, complain they're not on here fire away. If you feel they don't understand how we feel, no of course they don't but they're here for a very important reason. They're not Joe Schmo off the street, they are not conducting a survey. They are Caregivers they are the loved ones of people just like us and they are absolutely fighting this monster too. This is a forum trying to help a very large group of people it's not going to suit all exactly. It has been said before if you don't like the jokes delete or don't read them, if you don't like the off topics filter or search, if you only want to read things that apply to you use the search I mentioned. If you don't want to communicate w/ someone on here, then don't. Don't battle w/ people you don't think should be here, just be in your own space in this place and don't cut off someone else's lifeline.Apologies in advance for not holding my tongue,Kerry37 IPF '01 S. IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Probably best if you do sign off. I am confused with what your problem is and I am a patient. Why not go directly to the problem and piss them off and leave everyone else alone? Fay IPF 06/06 IL Caregivers I've certainly played my part in this controversy. It is not my intent to hurt anyone but I do think some honesty is called for. I'm signing off...I need a break from all this. Maybe in the morning it will look not so damaging. This conflict is not good for any of us... MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
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