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    Before this subject gets squashed, instead of changing the name of this one, why cant you add one to the list that would apply more to ppl that dont actually have to care for someone but for ppl like me for instance, who have a child or another person who has a friend or relative that NEED this sort of 'forum' to come to. I admit I didnt come here much but someone said I needed to visit so now I do. Anyway, maybe we should decide what to name a new one instead of trying to change one that is important to many.


      Folks - please - let's put the brakes on here, take a deep breath, step back, and just pause a moment.

      First of all, no one here is being defined by their role in their family member's life. Some of us are active 'caregivers', involved in the day to day physical care as well as emotional care of our loved ones; some of us are independent spouses, fathers/mothers/sibs/significant others, who live with a person who happens to be in a wheelchair, mostly with spinal cord injuries.

      Don't we all 'give care', as someone stated; doesn't 'giving care' imply that we care for another, and would do what we can out of our love for that person to further their wellbeing? To me, caregiving implies more than assisting with a bowel program or fetching a glass of water or making a doc's appointment - those are the easy tasks.

      I understand that there are those of you who don't wish to have the moniker of 'caregiver' hung on you. That's wonderful, and I sincerely applaud the circumstances which have allowed you to be in a situation where you can be independent. Then there are those of us who are involved, day in and day out, with our family members' care - in one way or another - sometimes more, sometimes less.

      My question for all of you is this - does this 'division' have to split this forum? I sincerely hope not, from the bottom of my heart. One of the true gems of this forum, and indeed, of all of CareCure, is that we come together, each of us with different circumstances, to share, and to support, and to learn from one another. What does it matter what our 'duties' are to our family member? The fact is that we're all related to, in some way, a person with a spinal cord injury, and we have had to adjust our lives in some ways to accommodate that. Does a handle really matter that much?

      For those of us who are independently involved with a person with SCI - great!
      For those of us who are more involved with our family member's lives, - great!

      If you want to post here, and give support - great!
      If you don't - great! There are other forums that might better suit your needs.

      Sorry if I sound snippy, but this has really turned into hair splitting, and I so, so, hope this is not going to split the wonderful friendships we've developed over the past two years.

      I agree with Wise, and as of now, the forum name will stand as is.

      I love you all; you all contribute so much, each from your own unique perspective. I hope you all continue to do so.

      Tough times don't last - tough people do.

      [This message was edited by Marmalady on 11-17-03 at 07:26 PM.]

      [This message was edited by Marmalady on 11-17-03 at 07:28 PM.]


        From TD:

        ""A rose, by any other name would still smell as sweet" as authored by Shakespeare is very appropriate here. At this special time of the year I think everyone should turn to their caregiver, whether you are AB or not, and say thanks for being there."

        TD - you are too sweet. Thank you!

        Tough times don't last - tough people do.


        • #34
          I think this is ridiculous. I have no anger over this. I was offering my opinions. This is clearly a forum for those who give care to people with SCI and I have no desire to change that.

          I don't accept the idea that anyone around someone with a SCI is a caregiver, nor do I think just being married makes me a caregiver. I was a caregiver as a profession and I am not as a wife. If my husband became ill or injured I would step up to care for him like he would for me. It is a sensitive subject for those who are asked, "Would he like some water or juice" or other questions and comments implying I make his decisions for him or he cant think for himself.

          I would really love if a new forum were created for people to connect who has a loved one with a SCI.



            Interesting thread. I think Marmalady's previous post was spot-on. I do think people interpret the word "caregiving" in different ways, which makes this forum a nice place for a variety of people to post. I have always looked at the "Caregiving" forum as a place where family members fit in very well - regardless of whether they actually perform activities of caregiving.

            Really, EVERY forum on this Web site is a place for people who have loved ones with an SCI to connect. I don't think another forum specifically devoted to family members would serve any useful purpose.

            Moody, I see your point. But, respectfully, I think you are defining the name of this forum too narrowly. Though you may not provide care to your husband in terms of activities of daily living, you do provide care simply by being his wife. Your participation on this site (and some 250 posts in just five months) indicates to me that you have a profound interest in SCI - most likely because your husband has one. Your "defense" of your "position" strikes me as odd because it sounds so strident. No need to be.


              This topic seems to have become very heated in the past few days! I've been busy and unable to post much lately (see my adventures in Kate's Online Journal) but I do want to add MY two cents worth. (How much have we collected so far, btw?? [img]/forum/images/smilies/biggrin.gif[/img])

              I can see the dilemma here. Kate is right; Martha is right; TD is right; Jackie is right; Moody is right...when did we all begin to believe that anything about SCI was simple or straightforward?? There are folks here who labor 24/7 caring for their loved ones; there are some here who have loved ones that are gloriously independent; there are some who have gone from one end of the spectrum to the other (I'm almost in this last category myself).

              Frankly, I think the name should stay as is. The caregivers who are truly, deeply involved in the day-to-day care of someone with an SCI need this forum and the help and support of other caregivers FAR more than the people who do not consider themselves caregivers, but consider themselves simply people who love independent people with a disability. I do not intend to demean what AB's go through who care about someone with a disability...I say this as someone who has done both. My daughter required 24/7 care at first, and I was her caregiver. I will never forget the mind-numbing, shattering weariness that was my normal state in that life. Bri has improved, and improved...and become virtually independent. I still come here in the hope that I can help bolster other caregivers, especially those newly on this path. I am also involved with a man who has a spinal injury, but he is completely independent, and has been since I've met him. I do not for a moment consider myself his caregiver...and can relate to Moody's observations on that point.

              Let me ask this: do those of you who want to discuss being involved with someone with an SCI feel that the Relationships & Sexuality Forum isn't the right forum for you? It does exclude parents and siblings, I suppose. Maybe a Family Forum? I'm not sure. I just know that this forum has been a Godsend for me, and for many others, I'm sure.

              Hell, we're all tired! [img]/forum/images/smilies/wink.gif[/img]
              "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
              ~Geraldine Brooks, "Year of Wonders"

              "Be kind...for everyone you meet is fighting a great battle."
              ~Philo of Alexandria


                Well, gosh! Who knew anybody would feel so strongly? I think when I made those (casual!) comments on a different thread, I was trying to say that I censored myself from participating here--because the name scared me away. Too bad for me!

                I posted on Life and on Cure for a long time, though, and in the end, discovered that this WAS a perfectly comfortable place for me to be. So, I don't care what it's called--I just wanted there to be some kind of hint to newcomers in my situation that they belong here as much as I certainly do. But hey--it doesn't matter.

                Martha, I don't know why, but I think about you, like, often. Your sass is sorely missed . . .


                  Might I suggest an alternative to changing the name of the forum? How about changing the text below the forum name?

                  Also, note below some of the recent topics on this forum. Diverse.

                  Family member looking for advice
                  Girlfriend looking for feedback
                  Mom venting
                  Friend posting about PCAs
                  SCI person posting about PCAs
                  Mom announcing birth ... of a kitten
                  Daughter of a quadriplegic
                  SCI person speaking about loss
                  Wife posting about volunteering
                  Concerned girlfriend


                    It seems that the Life forum is a good place to post just about anything. For myself, my families daily life spills into this forum because this is where I have felt the closest bond and formed what I know to be very special friendships. When I reflect upon the last 4 years I try to imagine what our lives would have been without this forum. I have felt such comfort in sharing some very personal and difficult issues in my life and as a group you have responded with such CARE that in some ways you have become my Caregivers. Thank you all! Kath


                      Trust Kate to stir the pot and she wasn't even trying this time. You go girl, gotta keep us on our toes, never a dull moment here! We are a feisty group.


                        clipper, that is a good idea. I just changed the subtext so that it is more inclusive. Thank you. Wise.


                          Kate, Vicky, Marmalady, Kath - I agree with all your posts. I don't really care what this Forum is called. I just know I love it.

                          I have come here for the last two years, mostly just reading your posts, and I feel that I know you all. It has helped and comforted me to see that others are going through the same emotions as I have - sadness, fear, anger, being overwhelmed with everything. It has truly helped me a lot to deal with this 'unwanted intrusion' into our lives.

                          I don't want this Forum to change. I just don't care what it is called. Thank you to everyone for your heartfelt posts over the last two years. You will never know how much it has helped me. Thank you.



                            Well, I just figured out why this topic spiraled so -

                            Mercury has been going into retrograde this past week, and Mercury rules communications and language difficulties! [img]/forum/images/smilies/biggrin.gif[/img] So we can blame it on the stars!

                            Seriously - I hope this is all resolving itself; Wise set this forum up originally for family, friends, and caregivers, and it just seemed logical at that time to call it 'caregiving'.

                            This forum has become a place where all of us involved in the lives of our loved ones, no matter what the level of care, can come to share - our lives, our frustrations, and our feelings and thoughts. It's become a place where people can find other people who know how they feel when going through a rough time, and also know how a seemingly small event can make or break a day. A place where a person can 'vent', and find people who have been there, and understand things like Vicky mentioned 'mind numbing weariness'.

                            To you 'lurkers' (!) who have posted here in this topic, we'd love to have you join the club, and welcome.

                            To those 'seasoned' members, you have all become my sisters and brothers.

                            To Wise - Thank you for changing the description!

                            I continue to hope that this forum provides sanctuary for those who need it, friendship for those who want it, and information for those who seek it.


                            Tough times don't last - tough people do.


                              Amen Marm....I love the word Sanctuary its like a cloak of comfort to me when I hear it! [img]/forum/images/smilies/smile.gif[/img] I feel the same way about you all too!! [img]/forum/images/smilies/biggrin.gif[/img] [img]/forum/images/smilies/biggrin.gif[/img] [img]/forum/images/smilies/cool.gif[/img]

                              P.S I believe I wrongfully used the term "Cargivers" earlier.... I stand corrected. "Caregiving" definitely suggests a broader invitation covering many different aspects of living life with SCI! Sorry! I really can't imagine facing some days without this forum to go to at the end of the day (or the middle, or the beginning) [img]/forum/images/smilies/tongue.gif[/img] Let's all remember to ...stop...and just breathe more often! Be well everyone!
                              ~ Be the change you wish to see in the world ~ Mahatma Gandi

                              " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                              Jane Siberry


                              • #45
                                I feel very hurt and attacked for my joining in on this conversation. I think it wasnt warrented, as I feel I was very open and held no hostility. I was just giving my personal feelings on this board, in no way attacking the support network some of you have created.