Caregivers

[Guest guest]

Hi Kerry,

I can't believe it---YOU TOOK THE WORDS RIGHT OUT OF MY MOUTH---my wife (the caregiver) joined the board first and is the reason I am here now. She checks in every day on her computer and reads all the posts, she has been a nurse for 35 years (retired now) and explains to me about the medications and all the different problems and complications that board members are having and answers alot of my questions that I have. There maybe a time in the future that I can't sit in front of the computer and do what I am doing. I think it is just great that people like K., Teri, and other caregivers do what they do for their loved ones.

We have heard about some spouses that can't handle the situation and leave.

If all caregivers or spouses are able to gain some insight about this disease through

this site, I believe that both the caregiver and board member will be able to help each other through the tough days that we all experience and become more understanding of each others needs during those times. I learn alot about how my wife must feel, through some of the things that the caregivers say, thats why I always read all the posts (and by the way

I think all of you women should be Redheads instead of blondes). I have to stop because I can only be serious for so long, sooo keep the caregivers on board I think we need them!!!

G. UIP/IPF 5/07 AZ.

--

Subject: 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

[Guest guest]

I wholeheartedly second Kerry and . Three cheers for the caregivers and thank God for those who care enough to join us!

Sarcoid/PF 3/2006 California

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

[Guest guest]

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 

[Guest guest]

Kerry,

Thank God you didn't hold your tongue. I agree with you totally. This group has been my education as well as, in some ways, my salvation. To exclude caregivers is an abomination and a clearly un-Christian thing to do. Dealing with this disease is one thing, but to be a caregiver and have no knowledge or guidance must be hell.

I don't understand the necessity of the poll, and I hope that it is a big YES for the carefivers.

And Kerry, keep that tongue going.

Jack

Caregivers

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

[Guest guest]

OK. After much thought and consideration of the comments put forth by

previous posters on this subject, I have to come down on the side of letting

the caregivers on. I think Kerry’s initial posting stated very well the

benefits to be gained by both the caregiver and the PF patient through the

better understanding of this disease that the caregiver gains from our postings.

I think it helps the caregiver to actually see postings from other folks with

PF describing the trials they endure so that he or she can realize that their

loved one’s complaints & limitations are real rather than the result

of some hypochondriac mindset, for instance.

As far as venting is concerned, I’ve seen very little toward

caregivers here and consider it a non-issue. The venting that I have seen

seemed to be aimed toward caregivers who wouldn’t care enough to join

this forum anyway. Now if we were to let in Doctors, on the other hand, OY!

Would they get a comeuppance! Anyway, I just don’t see that caregivers

on the patients board equates to not being able to vent.

On the other hand, I would not want to be a member of the caregivers

group simply because it does serve as a vehicle for them to vent about the

patient in addition to the ability to share information. I know that my wife

needed to be able to blow off steam somewhere, particularly during the depressing

days I had following diagnosis. The caregivers group gave her that outlet. She

would not have been able to do that if I had been reading the caregivers board.

What I’m trying to say, unfortunately not well, is that the

boards are fundamentally different. I don’t feel that we as patients have

anything to fear from caregivers whereas they really do need to have the

ability to be free of us, if only in hyperspace.

BTW—I noted that as of today, there were only 31 votes on this

issue. Let’s get out & vote folks or the few will dominate the many.

I think I heard that platitude somewhere…

Bob Dopher IPF 04/07

[Guest guest]

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!