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  • caregiver or spouse

    Hi there,
    I was wondering if anyone else out there sometimes have problems with balancing caregiver an spouse roles? There are times where the caregiver in me knows that he needs to do it on his own but then the wife part kicks in and I jump in to help out.
    Also, I know that he needs to communicate with others that are disabled but i seems like he talks with them more now then he has before, especially about personnal things that I feel WE should be talking about. He keeps telling me that I don't understand - well I am trying to understand but it is hard when it seems like he is trying to push me away. I just don't know anymore!!!!!
    Sometimes I just wish I could have my old husband back cuz I miss him and the old days - but I know that is not an option.
    I am so sorry for venting but this is the only place that I know of that there are others (caregivers/spouses) in the same position that I am in.

  • #2
    Originally posted by mnnice View Post
    Hi there,
    I was wondering if anyone else out there sometimes have problems with balancing caregiver an spouse roles? There are times where the caregiver in me knows that he needs to do it on his own but then the wife part kicks in and I jump in to help out.
    Also, I know that he needs to communicate with others that are disabled but i seems like he talks with them more now then he has before, especially about personnal things that I feel WE should be talking about. He keeps telling me that I don't understand - well I am trying to understand but it is hard when it seems like he is trying to push me away. I just don't know anymore!!!!!
    Sometimes I just wish I could have my old husband back cuz I miss him and the old days - but I know that is not an option.
    I am so sorry for venting but this is the only place that I know of that there are others (caregivers/spouses) in the same position that I am in.
    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.

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    • #3
      There is an organization called Wellspouse that I have found very helpful. Google it and take a look.

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      • #4
        Oh yes, I do know exactly what you are talking about. I have been caring for my husband for almost 6 years now and I truly love him with all my heart but this winter has been very very bad for us. If I hear one more time that I don't understand I am going to scream. Thats a two way street in my opinion. I will probably get flamed for that comment. Please feel free to PM if you want to talk in private.

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        • #5
          Ten years post this month . . . what can I say?

          It's worth it.
          I hate it.
          I don't expect him to know what my end looks like, or feels like.
          I hate it.
          I followed the nurses' advice and never, ever did for him what he could do for himself, even if it took 50 times as long.
          I hate it.
          A therapist once challenged me to figure out what I'd rather do . . . keep thinking I had to manage our lives all by myself or see what happened when I backed off. I was so utterly pissed that I took the bait! Whose job should it be to call the roofers when we clearly needed a repair over the kitchen? Well, his, dammit. So, I didn't nag, didn't call, watched the rains come, and the night our kitchen ceiling collapsed (yes, it did!) was a kind of triumphant moment for us both. He had to figure out how to clean up the mess, which was over-the-top ridiculous, and he did.
          So, he was back to being my husband after that, and I was done seeing him as a patient, but I still freaking hate it.

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          • #6
            I hate it too. Sigh.

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            • #7
              I wish it was like that Kate, but with MS I am dealing with cognitive issues too. I too hate it.

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              • #8
                Poor choice of words, I don't really "wish it was like that" actually I wish things were normal but....

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                • #9
                  I hate that I have to rely on unreliable aides. Another aide disaster this week-end that makes us feel more helpless. I can't get him up alone and he can't be alone because of the respiratory issues.
                  I can do everything he needs, but impossible for one person to do it all.
                  We are in the middle of a paperwork mess on top of everything.
                  He is having short term memory loss for reasons we are trying to determine, so I feel very alone in the decisions and keeping meds, supplies etc in order.
                  That is what I hate.

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                  • #10
                    I feel like we don't know where He begins and i end.
                    "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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                    • #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, 03:52 PM. Reason: errors, typos, etc.

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                      • #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.
                        I have enough money to last me the rest of my life, unless I buy something.
                        - Jackie Mason -

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                        • #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!

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                          • #14
                            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.

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                            • #15
                              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.

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