Re: Caregivers/Jack

[Guest guest]

Jack... being new, perhaps you are not aware there is a board especially for caregivers where they have access to knowledge and guidance as well as experience from others who live with IPF.

If there were only one board then indeed it would be an 'abomination and clearly un-Christian' to divide and separate...

I'm glad this group is your 'education...and salvation'. We do help each other and it's why the group was formed. Sure grateful it's working for you!

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

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