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Post by Blossom/Jackie W. on Mar 10, 2012 10:42:06 GMT -5
A few months back we closed our separate forum that we had for caregivers due to lack of participation. People would join and read but.... didn't partake (although a few did). This made it very frustrating and difficult for the Administrator (and a few posters) who were always trying to engage people with different topics.
We have at least a few experienced caregivers/support people here who read the forum frequently. They don't always post but, they do stop in to read and they're always willing to help. And; I have noticed more and more caregivers joining our main organization, and they and others, also come here with questions.
Sometimes the support they need however has to come from "other" caregivers ;like themselves. We as patients can help them in many ways but..... in other ways, we can't. Especially from a psychological aspect.
I think we're doing them, and the people they love (fellow patients) , a disservice.
We've always been concerned about privacy with questions they might have or things they want to talk about/share with other caregivers thus we tried the other forum. However; members here have a choice of anonymity when they sign up. So, hopefully, that will take care of the privacy aspect.
Anyway; I think it's worth a shot....... what do you think?
Please take a moment to vote. Yes, No or Depends. If "Depends", please elaborate what it depends on.
Thank You Jackie W
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Post by sandy07 on Mar 10, 2012 11:15:28 GMT -5
Jackie....You'll be in a better position than me to see what the statistics are on this site...and others...re: men versus women using the site. I may be wrong but it seems the women caregivers are more apt to check out and use COPD forums for help. It would be wonderful to get more men but for some reason I don't think that will happen. Maybe they don't think they need help or just use the doctor for any help they think they need. It's not always enough tho.
Again, I forget the statistics but aren't there more women than men with COPD? That means, in theory at least, that there would be more men caretakers. Which means, again in theory, that very few would use the site.
I'm not saying it shouldn't be done but maybe not in the same way. I think a lot of us other COPDers could help the caregivers as well. Maybe giving our point of view, from this side. I know the caregivers need a place to rant and rave as well tho. I'm just not sure how that should be done. Maybe a "secret" profile and sign in..or something.
I think the biggest problem is getting men to use it. Also, how long would someone "need" to use it? Once? Twice? Just until the problem is solved? I guess I better vote "it depends".
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Post by sandy07 on Mar 10, 2012 11:41:57 GMT -5
I had to come back in after thinking about it for a few minutes.
Maybe us COPDers NEED to know what the caregivers are saying. It might help if we knew since then we might be able to change it. My hubby doesn't say much but I'm sure there's a lot going on in his mind. He's one that would never ask for help tho. But if I had any idea what the problems were I could, perhaps, change what I'm doing or adjust something somehow to make it better for him. Hearing what other men are thinking might help me deal with my own "caregiver" in a better way. Just a thought.
Also, they'd only have to say my "wife" or my "mother" or my "husband". No names.
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Post by Deleted on Mar 10, 2012 11:52:56 GMT -5
Just from a caregivers point of view.......we went into the doctors office yesterday and I had a list of things to ask him and of coarse his time is very limited, so not all questions were answered, I know that this site has helped me and my husband to better understand COPD and what works for some people and what works for others....We really appreciate any advice....and if this site only helps a handful of people....isnt it worth it?
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Post by John on Mar 10, 2012 12:26:00 GMT -5
I support the idea , Sandy good points , copd not only effects our lives but all the people around us . I believe our caregivers are as important as our Drs.in our action plans. This way hopefully we can improve the quality of life for all family members involved
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Post by barbara41 on Mar 10, 2012 13:15:32 GMT -5
As a former caregiver and member of the previous Caregiver Forum I found the site to be of great value , not only for care strategies but for emotional support . I was able to express my many emotions without fear of censure because the others had probably been where I was. Like any support group members come and go depending on their needs and especially online this is hard to manage. Maybe there could be a separate section for caregiver questions as opposed to a more formal and closed board. Participants could maybe use personal messaging for more private communication if that was warranted. I understand that open communication between the person with COPD and his/her caregiver is ideal but I know from experience that sometimes I didn't want to burden my already burdened husband with how I was feeling . I strongly feel that there should be a caregiver component - however informal. Thanks for listening .....
Barb41
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Post by chrocary / Jane on Mar 10, 2012 16:37:05 GMT -5
As some of you may know, my sister had COPD so some of my knowledge of the illness came from her and some of the questions I had then I did not want to ask perhaps fearing the answer or maybe because I didn't want to upset her. I know she was not always as honest in some of her answers because she didn't want to upset the family AND I know that is where all of you came in. The support between all of you is amazing to read and I am soooo very glad I joined.
I think that caregivers should be able to know they can talk with each other, without naming names if they wish and express their feelings openly without the fear of upsetting one of us who are coping with enough problems. It would give them the freedom to "let their hair down" and support each other
Maybe together they can find a way to share information with "copders" that needs to be shared without hurting anyones feelings, just sharing suggestions.
Chrocary (Jane)
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Post by susanny on Mar 11, 2012 11:14:16 GMT -5
I love the idea of caregivers being able to get things off their chests and also to look foranswers to what I am sure are many questions. I also agree that I'd love to know what I can do myself to make things easier on my husband and know that the info on a caregivers site would have that. I love him and d on't want to put anymore on him than what is necessary.........
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Post by aero63 on Mar 11, 2012 19:49:18 GMT -5
I believe that the Caregiver aspect is an excellent spot for those in need of advice to come. However, unlike the others, I do believe it should not be open to the COPDers. I just feel, and this is my opinion, that it could cause hurt...nonintentional but all the same, painful. Caregivers need a place to go to vent, like we do, and a place they can not only get and give advice but be honest with each other. Knowing one might be reading, they may hold out on things.
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Post by John on Mar 13, 2012 17:05:24 GMT -5
Areo very good point ! I was leaning toward it being open but after reading your thoughts I agree it should be for care givers only .
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Post by chrisw on Mar 14, 2012 21:34:33 GMT -5
i voted "it depends' because there are many sides to this, but when all is said and done there have to be ?moderators? and I know that when Gwen was helping on this before, she found it hard to keep any sort of flow going. So when I say it depends then what means is that it is a wonderful idea IF THERE ARE ENOUGH PEOPLE INTERESTED!!!
If there is a caregivers area then it might well help me to be more considerate of Gwen's frustration as a caregiver if I had access. However if this stopped any caregiver from being open then this would not be the way to go.
If this doesn't make sense then I will blame it on the painkillers that have been so effective for me ;D
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Post by Blossom/Jackie W. on Mar 15, 2012 8:38:29 GMT -5
Wellllll........ First of all thank you very much for those of you who took a moment to vote..... and a big thank you to those of you who added your thoughts on the subject. They have helped tremendously. And Chris; it was GREAT to see you participate! When I set up the other forum it was quasi "protected" Any member wanting to join had to be approved by the Administrator, Mary Cunningham .....to help identify whether in fact the individual wanting to join WAS a caregiver. I did it to help protect their privacy. Unfortunately we don't do that here, and I can't, without setting up the entire board that way. So.... we have the privacy issue to still contend with for those questions, issues, dumping a load of frustrations that a person wouldn't want to share openly so as "not to hurt" or "offend". I think it can be done via Private Messages. This forum then becomes, or acts, a portal for one Caregiver/member to contact another OR, post openly with questions and issues. You know something though what sold me on this? Terrilee's post. She said.... Yes Terri.... it IS worth it and I needed to be reminded of something and I thank you. In 2004 I was diagnosed. There was nothing in Canada on COPD except a few small blurbs at the Thoracic Society site and the Lung Association. Nothing. E'thing I learned about COPD was from other countries. I spent 18 months "learning" about this disease and building a site (just as a patient), launching on World COPD Day in 2006. That site now is our organization's main website. And the organization is now a registered charity. And why did I do it? I know this may sound "hoaky" but I remember telling Dave if I can spare just one patient from going through what I did trying to acquire knowledge and info then all the work was worth it. And believe me self advocacy wasn't something many in Canada did with this disease at the time. So; like I said TerriLee .... you're right. I can set the area up (seperate category). What people do with it is another matter. After all, you can lead a horse to water..... What I would ask though is if you ARE a caregiver or support person, that you identify yourself as such. Perhapes even once I have the area established, and/or modify your profile to reflect same. The reason I ask this is so that if another caregiver knows that YOU are, they can contact you via Private Message with those issus or questions they don't want posted publically. Also; I will put it up for access only to Logged On, Registered Members. That may also hlep a bit (not different than some of our areas now that can't be viewed /read) unless a member is logged on. If you don't know how to do a Private Message, or Modify Your Profile, please check the "How To's" on the main page (home page) of this forum. On a final note..... and so that e'one is aware.; although our Mods and Admin's can move, delete, edit, block, ban, track IP's etc; they (myself included) cannot read or access anyone's private messages. (In case you were wondering )Again; I thank you all.....
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Post by mary57 on Mar 15, 2012 13:49:53 GMT -5
Sounds good Jackie, I'm glad for the caregivers to have a space to vent, as well as a place to learn.
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Post by hugahusky on Mar 17, 2012 18:17:20 GMT -5
Hi Jackie, It's dd97(Juanita), I'm at Sue's and was just reading about the new caregivers forum. I really miss the old one Mary had. We could go in and talk and vent openly and other caregivers would post how things were going with them that day. Doing it as a private message will only let the one you message answer you. It really helps when you can get more than one opinion. I helped Mary with the forum when she was away and I know how frustrating it could be when no one posted but maybe they were busy looking after their loved ones. Would it be possible for us the caregivers to have a room like "Over The Fence" that the COPDers have? We would have to registrar like we did before and if we wanted to private message one of our members we would have their profile and e-mail address to do so. I haven't been active on the COPD site because I feel lost and I really miss the talks we had in the Caregiver group each day. Miss chatting with my friends and not knowing their e-mail addresses it is very hard to contact them. If I can do anything to help, please let me know.
Thanks for listening to me growl,
dd97 (Juanita)
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Post by Blossom/Jackie W. on Mar 18, 2012 8:46:15 GMT -5
You're not groweling Juanita...... you're stating an opinion. My plan is to open an area for caregivers. If I "white it out" and I plan to, only registered, logged on members, will be able to read it. However; it won't be restricted (in terms of access) to only caregivers. It'll be restricted to registered "logged on members" That's the best I can do. Then the caregiver/support person has the option of posting openly within their area if they so choose; or contacting via PM any other member. That's the best I can do without creating a seperate forum again. Anyway; I hope to have it up in the next day or two. I hope you're well and TY!
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Post by sandy07 on Mar 18, 2012 9:35:53 GMT -5
Maybe the caregivers could register under an "assumed" name.
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Post by John on Mar 19, 2012 21:15:02 GMT -5
Hi All; As far as the caregiver section goes my plan is to monitor for anyone trying to sell there products ,rude words or behaviors not conducive to the well being of our cause , like I would any other area of the forum . Not being a caregiver and out of respect, I'm not going to be commenting on any topic unless I am directly asked how I feel I do feel this can work if the unwritten rules of respect and common decency are applied .
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Post by barbara41 on Mar 20, 2012 7:21:02 GMT -5
John,
I understand your concerns about respect and supporting the group's position. However, sometimes caregivers are overcome with emotions that may sound negative to anyone not in that position. I would hope that the PM component of the section would then be utilized. The problem with online communication is that the written word can be interpreted in many ways and the nuances of face to face discussion are absent. I still think this addition of a caregiver site is a good move and I'm sure it will be used appropriately.
Barb41
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Post by John on Mar 20, 2012 11:09:48 GMT -5
I agree Barbara! Thank You
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