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Not a caregiver; not a spouse

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    Not a caregiver; not a spouse

    I'm not sure what I am to him; all I know is that I care very much for a man that is a T5/6 para but it isn't enough. I've known him for 2 yrs; he's post nearly 3. I've read everything I could get my hands on....I visit this site several times a day but I was still pathetically unprepared for these last six weeks and completely inept whenever I tried to help; to the point that I worried that my lack of experience may have hurt him in some way.

    He underwent H/O surgery and had so many complications. I tried to be there for him as much as I could both in the hospital and afterwards but children & job kept me away at times when I wanted to be with him... should have been there FOR him. I've tried to help with dressings and wound care and I'm all thumbs. I should have insisted he go to the hospital a couple times when there were problems and I didn't because I felt it was his decision. There were times in the hospital that I was not confident in the care he was receiving but I failed to speak up because I felt they know more than I do. I promised him he could count on me but I feel I have failed him in so many ways. He has a relative who acts as a caregiver on an as-needed-basis and she is wonderful. She took care of him after the accident and he is very confident in her and I am so grateful that she is around but she isn't always so I tried to pick up the slack but she knows exactly what to say; exactly what to do; exactly what to watch for and be cautious of.

    He is very independent and doesn't need a caregiver and I don't want to be one but I do want to be good for him not a detriment. I just don't know how.

    There was a time when we first met that I thought I made a difference in his life but now I just feel terribly inadequate and I don't know what to do. He doesn't make me feel this way. It is just so painfully obvious to me and he has had enough difficulty in his life; he doesn't need more. It has been suggested to me that I leave him alone; that he has family who can take care of him and friends that he would hang out with if I wasn't around. I care very deeply for this strong, gentle man but maybe I am being selfish and I don't want to do anything that might hurt him in the long run. I just don't know what to do.

    Hi, Linda,

    Are your feelings for him being returned? Is there a relationship here? You said it's 'been suggested' to you, that you leave him alone? Who's doing the talking, and what basis do they have for making that statement? I would first of all have a talk with him, and ask him what he wants of you in a relationship; also, what he wants in terms of his care when he's ill.

    Dressing changes and wound care can be daunting; can you ask his relative caregiver to teach you what you need to know? There's a fine line between 'noodging' someone to go see a doc, or the hospital, even in a non-SCI relationship; hubbie and I do it all the time with each other, and sometimes we just need to hear from another person that yes, we should get something looked at or taken care of.

    Being with someone in hospital is intimidating, too; I believe that as a society we need to quit looking at docs as 'Marcus Welby' types, who are godlike and know everything there is to know. We need to learn to be proactive for ourselves and our family members, to make sure they're getting the right care. I've made a pest of myself more times than I care to remember, while my son was in hospital or at rehab.

    He needs to learn also what his physical needs are re the sCI, so that he can direct anyone who is giving him physical care.

    Tough times don't last - tough people do.