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Thread: caregiver or spouse

  1. #11

    Disabled Interloper Alert

    The day I awakened before anyone else, managed to get myself out of bed, to the kitchen and somehow got more cereal in the bowl than on the table, floor and me was a triumph, a big, honking, break out balloons, confetti and the marching band TA DA! moment

    Yes, I was going to eat it dry, but, damn it, I'd done it!

    This was after I'd been home for weeks, but had not yet returned to work even part-time in the office. I remember my Mom looking at me and saying, "Well, I guess you don't need me anymore."

    Stunned. Huh? I had expected her to be as proud of my cereal accomplishment as I was. Instead, she felt some kind of sadness I did not understand. I'm still not sure I can wrap my head around it.

    This was the same woman who had decided she would let me work it out, struggle through so I could learn, no matter how long it took for me, to tie my own shoes as her cerebral palsied daughter. The same was true for dressing myself, brushing my teeth, bathing, all the things she knew I needed to do independently. She helped me become independent to a near fault.

    Post SCI, Mom had moved into my home with my then husband and me to care for me, to get me back and forth to medical appointments, to keep me fed, showered, yaddi yaddi blah blah, to help me get back to my life and my work. As I became more independent, others who were closest to me seemed to have far different reactions to my new skills than I did.

    There have been some individuals in my life who have attempted to discourage me from connecting with other dis people. It strikes me as odd. (Denial much, dude?) One particular individual said it would be depressing to talk with others like me.

    Say what?

    It gave me an unfortunate insight into what I assumed this person thought about me. I had assumed I was depressing to that person (to all ab's???) as a person with significant disabilities. Not talking about it, pretending all is just fab, no adjustments needed, chair? what chair?, and sticking with only ab's in my life does not make it go away.

    Talking with others who are dis, having friends who are also dis, is affirming. I'm not the only one living life in a fucked up body. I'm not the only one to deal with poopage at really sucktastic times and urine leaks and equipment malfunctions and UTI/respiratory infections and related problems and physical access to where I want to go and what I want to do in my life and dating/mating and the thousand myriad little details of trying to make my life work with a really messed up physical presence.

    No matter how much those who love me think they understand, they really cannot and don't. I also understand I can never know what any of this has been and is like for anyone else because I am not the abled-bodied person in any of these life equations, never have been.

    When I talk with and/or get together with my dis friends, there is a connection I cannot explain other than I know they know and they know I know. It's as though I can exhale fully, relax in some way because somebody else gets it, gets me and I that other person. It's not an attempt to shut anyone who is ab out of my life. I doubt it is for any of us in the dis tribe at large.

    I hope I've not rolled on any toes with what I've written. I read what everyone wrote because I hope to better understand the ab's in my life and what this must be like for them. I'd like to understand and yet I know I don't know.

    Maybe what I've written helps someone else? I've no way to know and I'm not asking for any encouragement or attempting to force any reaction. I've just written about a minute portion of my dis life. Maybe it helps. Maybe it doesn;t. It has somehow helped me to write it.

    Thanks for letting me be an interloper in your thread. Thank you, too, for openly sharing what you have because it helps me at least (maybe) have a glimpse of what it's like for those on the other side of loving those of us who are dis.

    The more I know the more I know I don't know.

    MaryEllen
    Last edited by LaMemChose; 03-20-2011 at 03:52 PM. Reason: errors, typos, etc.

  2. #12
    Ditto, ditto, ditto to all that has been said here. As I post this hubby is sleeping and has been for most of the afternoon. I can't go anywhere while he's asleep in case "something" happens and I can't see hiring someone to sit there and watch him sleep so I can get away. I hate it too but this is what our lives have become. Double sigh.

  3. #13
    I don't really comment on much on this site but I often read the posts. Just couldn't resist this though...I can't believe you actually let your kitchen roof collapse instead of calling the roofers yourself. That is crazy!

    And, Maryellen, loved your post. All so true!

  4. #14
    Quote Originally Posted by t8burst View Post
    This part of your post jumped out at me. It is his personal stuff, and believe me some of the stuff we go through is really, really personal. You shouldn't lay some sort of guilt trip on him for not sharing stuff he is not comfortable sharing with you. Some things you just don't want to tell your wife. Don't be hurt by this and I think you should respect his feelings.
    I guess I didn't explain it completely. The personal stuff isn't just about him, it has to do with the both of us. If it was just about him then fine but it is not.

    I would like to thank everyone for their insight on this, it is very helpfull and greatly appreciated. Open for more input on this subject.

  5. #15
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    Just stay brutally honest... that's what I do. Even if I don't want to say it or he doesn't want to hear it. I think that is what therapy is for... just saying the things we are afraid to say. We never need therapy because I say it like it is and I ask my husband to do the same. Of course it's not that easy... there is often a lot of tears and anger. But once we let it out if feels so much better.

  6. #16
    Love you all.... xoxoxoxo...

  7. #17
    Moderator jody's Avatar
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    my opinion is that it is better that you dont get into the very personal care giving. It can affect your relationship badly after a while. I can see why anyone would be sick of hearing someone you love say you dont or cant understand.
    It is true you cant, but that is a not a terrible thing. in some ways ignorance is bliss.
    If he is sharing intimate things with other disable folks, maybe he is worried if you knew all of his issues, that you wouldn't want to be intimate with him.

    I haven't yet reached the point in my crush situation, that things are going well enough to disclose my need to use a catheter, or some other things.
    I think some things, if they are shared too early, or not in the right way, it can freak a Able bodied person out a little. and make the other person embarrassed.
    some things are totally unsexy. he may be just trying to process things himself too. I wouldnt worry too much about being left out of the loop on some things. eventually you will know more than you do now.
    Last edited by jody; 03-23-2011 at 12:56 AM.

  8. #18
    This thread is a very common refrain from folks taking on dual roles (caregiver / spouse). In my nearly 11yrs post-injury I've NEVER witnessed anyone being able to realistically do both for any extended period of time. For some of you here who do make it work all I can say is that; You're truly Angels..

    As I've met, counseled and continue to teach new patients / families I realize that some folks don't have a choice in these matters, especially caregiving due to finances, healthcare facilities proximity, finding aides, etc.. For this I'm sorry however I would continue to encourage you to find any extra help that you can. Relatives, friends, community / church congregations to help you, even if it's only for an afternoon or an evening, get out of the house and do something good for yourself. Lunch with girlfriends? Walk outdoors? something other than being a 24/7 caregiver. It's not normal, we're social creatures. We need changes of scenery, people, routine once in a while. Burnout comes very quickly in this SCI scene.

    The other comment I have to make relates to the patients themselves. Hopefully, each and every SCI'd individual tries to maximize his / her independence. SCI is not an excuse to be lazy, boring, unproductive, perpetually depressing, uncommunicative, unloving, disrespectful, etc. In fact, in my mind it's the exact opposite. The injured should try to be as kind, loving, appreciative and patient as their caregiving spouse. It is vital to any relationship's survival. Love, communication, respect (self and mate), desire, commitment, self-improvement. I see too many paras & quads who, essentially, give up. Not an option, we didn't corner the market on misery and sadness. Life moves forward, move with it!

    My heart goes out to all caregivers and spouses. You ROCK!

    Onward & Upward,

    Chris
    C6-7 Quad

    P.S. Linda, short-term memory loss may be due to medication. For me, a few years ago, that was the culprit. Good luck.

  9. #19
    Thank-you for that practical and sensitive post Chris. That fact you are speaking from your years of experience counseling families gives you much credibility.

  10. #20
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    Yes thank you Chris. I am strugling with the whole trying to find help right now and hope it comes soon.

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