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Family and Spinal Cord Injury - New Article on CareCure

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    Family and Spinal Cord Injury - New Article on CareCure

    I just wrote and posted this article in the main carecure community web site: http://carecure.rutgers.edu/spinewir...adjustment.htm and would love to know what people think. Wise.

    [This message was edited by Wise Young on 03-14-03 at 09:00 AM.]

    #2
    Great article Dr. Young. Lots of food for thought.

    Comment


      #3
      I am continuing to edit and add to the article.

      Comment


        #4
        Dr. Young:

        I read your article. I thought it was very comprehensive. Perhaps along with the statistical data there could also be suggested coping mechanisms and advice for family members and friends.

        Thank you for taking the time to compile all this useful data.

        The article is wonderful!

        Comment


          #5
          Linda,

          Thanks. Coping is a very complex topic and there are probably as many coping strategies as there are people. It would be good if some family members could describe approaches that helped for them.

          Wise.

          Comment


            #6
            Dr. Young,

            I used to tell the social workers at the hospital that my family was almost obscenely well-equipped to deal with our crisis, and reading this article makes me believe I was right.

            It isn't coping strategies afterward that matter; it's the way you lived beforehand that seems to be key. First, we had a solid family, not perfect, but firmly connected in mostly healthy ways--and I mean between each of us and all four of us. All the years of trying so hard to be good partners and parents made it possible to hold together in the storm.

            Bruce was in a good space with his family, too, thanks to many years of struggle and work and patience and determination from all of them. They came through (as did some members of my own family) with presence, money, and a very necessary (to me!) reassurance that all would, somehow, be well.

            We had strong communities all around us: a church full of people ready to help, a collection of artists and writers we've worked with for years, a gang of fellow teachers and soccer parents wanting to be good to our kids, neighbors appearing out of nowhere with carpentry tools in hand, people from 12-step groups whose last names I still do not know showing up whenever they were called.

            I can't overstate the importance of the church, though I know it's not what some people want to hear. It wasn't just the knowledge that people prayed, though I did take comfort from that--it was that Bruce and I have been so much a part of what happens there for so long that it felt perfectly natural (awful, but natural!) to allow these old friends to take care of us in every they could imagine--and they are a very imaginative group.

            I guess what I'm trying to say is that what happens emotionally after sci is very much dependent on who you were before sci. If you've lived your life as if what counts most is relationships, then you're in a much better position to negotiate this crap.

            Is there a study to verify this? [img]/forum/images/smilies/smile.gif[/img]

            Comment


              #7
              Great article. I am glad to see someone discuss how SCI affects the whole family. As the mother of a male 21 year old C7-8, most of the caregiving came from me. He is at the stage of his life where he is developing his independence, so this was quite a shock for both of us. We had a tremendous amount of support from our families and church, and this made what was a terrible situation easier to bear. It has been 7 months since his injury and by the grace of God he is pretty independent - drives, does all his ADL's with minimal assistance, etc. I have had to "push" him to attain his maximum ability and, like I told him - I will do that til the day I die! I think all SCI people need someone to "push" them - physically, mentally, etc. and never allow them to give up. God gives us the strength we need to make it through each day.

              Comment


                #8
                Dr. Young
                Great article!
                "Many parents cannot adjust or forget..." As a parent, I don't think I will ever forget his accident. I mean, how can you?

                "It is not unusual to find tears in the eyes of parents of a person with spinal cord injury when they talk about the accident and the events that followed. Feelings of helplessness and hopelessness....." The feelings of helplessness and hopelessness were feelings instilled in us at the hospital by people who should know better. It was very upsetting to find out that there were options available to my son, (Methylprednisolone, Israel, Treadmill Training,etc....) that were not offerred to us, even as general information.

                When you see tears in the eyes of parents, it is because we have found someone,(such as yourself) who believes what we want to believe and this in itself is a huge relief. To find complete strangers, who generally believe, that they can help your child, is very draining emotionally. There is hope.

                Kate is absolutley bang on. "It isn't coping strategies afterward that matter; it's the way you lived beforehand that seems to be key. First, we had a solid family, not perfect....." Well said, Kate.

                Comment


                  #9
                  There was one other key component to my family's coping, besides family and church. That was good-the best-friends. The ones I'd had 4 or 5 yrs. dwindled. But I'd always put effort into maintaining friendships with a few women, for 20 yrs. or more. When I got out of rehab, they rallied. They dropped their lives and came from all over the U.S. to help us. I was 40 at the time I got injured, so my family's support was different from that of a very young adult. They watched my kids, gave money, respected my husband. And pushed me with their high expectations (which still annoy me, and still motivate me.) As always, Dr. Young, thanks.
                  Blog:
                  Does This Wheelchair Make My Ass Look Fat?

                  Comment


                    #10
                    Excellent replies! Kate, reifer, Iway and Betheny. You are all right on in your comments.

                    I'm not a church goer (I think the walls would crumble if I entered [img]/forum/images/smilies/wink.gif[/img]) but I am a spiritual person. I applaud you, your efforts, your friends, etc.

                    Iway, you made a very important point when you talked about the lack of information and pootr communication you and your family received from the "experts" at the hospital. It is because of this dynamic that I make such an effort each month to constantly go back to Craig hospital and talk to the patients and families one on one without the docs or staff. I've been told it makes a difference. That difference is education - plain and simple. And the more educated the patient and their loved ones are the more correct and good information/communication flows. And therefore progress.

                    I guess what I'm trying to say and encourage is that because of your (and the others I mentioned) education (baptism by fire) in the world of sci you would be fantastic purveyors of the right information to those newly injured and their families. I believe that if we can get to the 13,000 or so injured each year (one every 41 minutes) early and communicate to them above and beyond the standard medical protocol (which imo is very outdated in general for sci) we then continue to increase momentum towards better treatments for this life altering injury.

                    Education=Advocacy=Funding=Clinical Trials=Cure!

                    Peace. Keep up the good fight!

                    Comment


                      #11
                      Thanks for all the replies. I am humbled by some of the responses. I just updated article a bit with:

                      • Added some studies (mostly from the early 1980's) on children of spinal-injured parents, suggesting that child adjustment, identity, self-esteem, etc. is not adversely affected.
                      • Separated male and female fertility issues, adding more information about menarche and pregnancy.
                      • Added some references from the depression literature.

                      Wise.

                      Comment


                        #12
                        Us, too Phebus--

                        We've been back to the hospital a lot, certainly on important holidays and the anniversaries of the accident. I was astonished when it was our turn in the fire that there was NO support group, no system in place for spouses or parents, and nothing at all for the kids of injured people.

                        How is the need for this not obvious??

                        Also, you're right on about the bad information still so common among the hospital staff, from the aides to the er intake people to the doctors themselves. I took it for granted that because we happened to be at one of the best trauma centers in the west, he'd naturally get the best and most up-to-date kind of care. Not so, or at least not necessarily so. That's one reason we keep going back--because so many of them were wrong about his prognosis, and as someone said on this thread, hope is crucial for everyone involved.

                        Comment


                          #13
                          Kate is right...

                          What counts most is relationships....

                          Strength in numbers...I have observed that here...

                          Mary

                          ...and she lived happily ever after...
                          1FineSpineRN

                          Comment


                            #14
                            Wise,

                            I found your article quite comprehensive from the perspective of pulling in research studies from a varied set of sources. I have not seen a compilation like this before although I am familiar with a number of the studies you have referenced. I think referencing the studies themselves is hugely useful in that without that, alot of what I see written lacks any statistical credibility which is important to me in assessing the value of the material. Without the studies (which in themselves may be biased, out-of-date or in some other way flawed), it would read as feel-good type positivism without anything tangible.

                            Thanks,

                            Comment


                              #15
                              I would like to agree with Kate. I think the solidity of the marriage before the SCI probably has a big impact on whether or not the marriage will survive. My marriage did not survive, but the problems that caused the breakup were there before the injury. When I came home from the hospital, I needed ALOT of help, and all of my family had gone home (his family never bothered to even come). He refused to provide any assistance at all (he later said he just "freaked"), and I had two children and a house to run. Thank God for friends who would drive the kids and run errands and bring meals, and a 6 year old willing to learn to cook, an 11 year old who could learn to pay bills (insufficient hand function to write), public door to door handicapped transportation to get me to PT, etc. If I asked for help, he yelled at me and told me I was being a burden. I stopped asking. That was the beginning of the end, but looking back, his lack of support and empathy was nothing new, just never so blantantly apparent. He was offered no support or counseling the two months I was in rehab, I think it should have been mandated. At this point, I am not bitter, we had an unhealthy marriage that needed to end. And while it was a struggle at the time, I came out of it with courage and self-confidence that I never knew I had. People look at me like I am nuts when I say my accident was the best thing that ever happened to me, but that is truly how I feel. Physically it is a struggle, but emotionally I am a very different person, one that I like much better.

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