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Family & Spinal Cord Injury

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    Family & Spinal Cord Injury


    I thought perhaps bringing this very appropriate article by Wise to the forefront might be appropriate, as we have so many new members.

    Caregivers and family members who have devoted their lives to the health of their parent, sibling, or child with SCI face many of the same issues that persons caring for their elders do in today's society. We feel the pain, both physical and emotional; we suffer from stress, burnout, and our own health problems as we try to continue in our jobs, run households, and provide the sometimes mind and body numbing care for the people we love.

    As Ami and Obi stated in another thread, the purpose of this forum was to provide a place for caregivers to meet, share thoughts, ideas and resources with other family members and caregivers. I was the one Wise gave the responsibility to for the founding of this forum. The caregivers forum has helped many many people as they struggle to learn about, accept, and deal with all the issues surrounding the impact SCI has on the entire family.

    We have had squabbles here; we have been tough to the point of tears on posters who were in jams and couldn't/wouldn't see their way out. We have weeded out our own batch of devos. But we have also provided some hope and sanctuary to family members at the brink of despair.

    Please provide respect to anyone who posts here. If you have no respect, please don't post here. For those of you who are circling about, waiting for a post from a member so you can zoom in and slam them, please don't do it on this forum. You many not realize it, but there are hundreds of people who won't post for fear of their feelings being attacked. Please remember that family members and caregivers come in all sizes, ages, cultures, and races, and treat everyone with the respect they deserve.

    While anyone can post on any forum, all we ask is that you post with respect and common decency.

    Thanks, Marm. I'm hardly the fearful type, but haven't posted much in here in a long time due to comments from non-caregivers. It's a wierd thing being put in the path of SCI injury. Like Jim, many friends don't have time or patience for us anymore, yet we aren't always welcome here either. Sometimes I feel like I'm scrabbling to hold onto each side of the chasm--and it's dam windy there! Deb


      love you Jackie

      and thanks for saying that so plainly.

      Deb, I have the inverse image to yours . . . not holding on to two edges of a chasm, but trying to balance on the blade of a knife. People with injuries know more than I ever will about adjusting to life after an injury, but I know more than they ever will about learning to share someone else's shifting and shattered future.

      These forums were bedrock for me when I most needed them--especially Marmalady's wise and hopeful presence right in my living room whenever I needed it, which was often.


        You two are just the best! Everyone needs sanctuary - and that's what this forum was set up to be. I don't know what has happened to the 'treat everyone with respect' philosophy, but it saddens me to see folks afraid to post, and then get shot at for expressing their feelings when they do.

        ((((((HUGS))))))))))) to both of you!


          thanks marm...very nice post. i too as lilsis stated am reluctant to post because i am not sci...i'm the better half. reading cc is MY sanctuary. thanks again!

          and in the end it's not the years in your life that count it's the life in your years. abraham lincoln


            You're most welcome!


              Good to see you back Marm - as well as the other ladies..


                I have something for non-caregivers who come here to rag on caregivers-
                Pucker up
                Pick a cheek ( l )
                Shall I turn the other cheek too?
                I don't want gratitude, but I expect respect. Disagree, argue, rant, but do it civilly. I deserve it, I've earned it, and I expect it, and so does anyone here who has been a caregiver.


                  Thank you Marm for this thread. I am certain that many of us can not fully understand how hard it must be to face and deal with the facts you are dealt with when you have a loved one become SCI'ed. I think I only touched it a bit when I took care of my mom after she ended having diabetes and going into a coma and coming out affected by it. My brother had a stroke and was taken care of by my sis-in-law but I became their driver for the appointments and therapy. It hurt me to see him end up in that chair and the other things it took away from him too. I tried to give them the support needed but I doubt I can still honestly say I understand how you all feel.

                  I recall seeing my mom age almost overnight after my injury. Also, saw her emotions go up and down so many times. It was hard for her I know. I saw her taking care of me even when she was dealing with health issues of her own. Even now, I still feel so bad that she had to go through all that because of my injury. I understand it was noone's fault but it still hurts to remember it all.

                  One thing that remains first and foremost is how lucky I was to have her and my dad to help and give me the support I needed. I tell my sis that they have gone to heaven with their "sapatitos" (shoes) on. Also, I see that without people like you(caregivers), we would be so very lost. You all are the best things in our lives and at times we sadly seem to forget that fact. I pray that God gives you all the patience and strength needed and we never lose sight of what great angels you are in our lives. Also, hope we can learn from you the beautiful gift of self sacrifice you have given us and become worthy of you all.

                  God bless each one of you always.

                  Last edited by Raven; 12 Jun 2006, 8:34 PM.
                  Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

                  A warrior is not one who always wins,
                  but one who keeps on fighting to the end ~ Unknown ~


                    Thank you Raven, for all the beauty and dignity you bring to CareCure.


                      Thank you for the article. I too am a caregiver, to my daughter who is 7. Just because we are not disabled doesnt mean that we dont feel or experience what SCI feel and experience. Just with us caregivers they dont have to go it alone. Plus my hopes, dreams and prayers are the same, if not more, than theres. So in all reality we are the same.

                      Stay safe my son. See you around thanksgiving!


                        Marm .. ditto to your words about Raven .... she's CareCure's treasure for sure ... and thanks for posting this thread .... to the rest of you .. never never be afraid to post here ... we circle the wagons pretty quick when its necessary ... and then of course when all else fails there's always the rocks to hide behind ..... Peace ...

                        ~ 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



                          thanks so much for the article! It was very insightful! I've often wondered about the effects of SCI on my children and other family members. Thank you for your kind words and your comments. Thank you!
                          There is nothing wrong with 2nd place.....unless you are in it.