Caregivers

[Guest guest]

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