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    #16
    My instinct at the moment is not very charitable: "Listen Buddy, I am a package deal, and if you don't realize how well you're making out in the calculus, then that's a real problem. I expect to be treated better by the father of my child." Has he no weaknesses that he brings to the partnership for which you compensate (though I'm sorry, I don't mean to draw that statement as a parallel)? Loading and unloading your chair, if it is not physically difficult, seems to me like really nothing at all to ask of anyone. Whatever in the world would be the point of your going shopping with him but then sitting in the car? Of course I hate shopping, so I just would tell him to go by himself. But if you're going too, sitting in a car seems pretty ludicrous.

    Are your roles in the relationship pretty equal? Is it a negotiated arrangement that your student loans pay for household things?

    If you think he otherwise is salvageable and you want to keep the peace, might you just try to explain the situation to him? Do you think he might understand and try? Though re- reading, I see you've done that. Maybe then you could just address your other question head-on: your stubbornness on this point seems like it might be an indication of something bigger. Are you suddenly having difficulty with my situation? Is this suddenly more than you thought you'd bargained for? Does he realize how it might feel to you for him to characterize being considerate of you, and (very marginally) helping you manage your challenges to participate fully in your life, as an "inconvenience?"

    Please accept what I say with the caveat that I'm extremely single.

    I would love to hear some of the incredible caregivers (again, not meaning to equate loading and unloading your chair with caregiving) on the site weigh in.
    -----------------------------------------------------------------
    Sorry, I missed the second page to see that you'd answered some of my questions. I do respect his willingness to read this and consider others' views. I wish you the best of luck.
    Last edited by Random; 27 Apr 2011, 3:34 PM.

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      #17
      If you have a disability have you looked for school funding through _VESID?
      HAve you looked at going on SSDI?
      Get involved in politics as if your life depended on it, because it does. -- Justin Dart

      I shall not tolerate ignorance or hate speech on this site.

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        #18
        Originally posted by PhoenixFiresky View Post
        After thinking about flicka's question, I feel like I need to explain my logic.
        I didn't mean to make you feel that way. All I was thinking is that 20 years of marriage is a long time for him to suddenly become impatient for no apparent reason.
        ____________________

        "We are the ones we've been waiting for. We are the change that we seek."
        - Barack Obama

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          #19
          Your husband is an a**hole. Sorry to be short and sweet, but its just how I see it! I cannot believe the things that you deal with and he is 100% in the wrong (on so many things, not just getting in/out of the car). I doubt my response will be seen as helpful to him, but maybe a little cold water reality is needed here.

          And yes, the swallowing IS a big big deal, get seen.

          Ami (caregiver to my husband who is paralyzed shoulders down totally)
          Wife of Chad (C4/5 since 1988), mom of a great teenager

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            #20
            Ami and I agree on everything. I am caregiver to my husband as well, he has MS and has only the use of his right arm/hand. His other extremities all move but no weight bearing, etc. Anyway there is alot of times I don't want to do something for my husband but I do it anyway, because I know he can't. There is alot of times it would be easier for me to do things for him, but when he is trying to do it himself, I let him. It may take alot longer or make a big mess but who cares. I recently read a post on here about someone who was making her own bowl of cereal and managed to actually get some in the bowl...I have come home to find more food on the floor many a day, I look at it like hey, saves on dog food.
            Also want to mention you really do need to look into some assistance, like disability, or SSI or anything, student loans will come back to bite you in the long run.
            Last but not least by any means....get the swallowing checked out, thats nothing to be playing around with and hoping for the best.
            Good luck and can't wait till Thursday, to see what hubby has to say.

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              #21
              I think the main issue is not the inconvenience, but something else. You have been on wheelchair for 20 years, so why is he feeling inconvenient now? I don't think it is even about the money.

              May be your husband is just getting too fed up of all the illness. Sorry for being harsh, but I think your husband is feeling "this is never going to end, we are going to be like this forever"! He is obviously getting older and getting tired of all the pressure and problems.

              I would suggest that you go into counseling. Your husband might be feeling caregiver fatigue. Therapy might help.

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                #22
                I've said this before - it sounds like the beginning of the end of the marriage. Maybe a trial separation to re-evaluate why you're together?
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                  #23
                  Originally posted by lynnifer View Post
                  I've said this before - it sounds like the beginning of the end of the marriage. Maybe a trial separation to re-evaluate why you're together?
                  Honestly, that's what it sounds like to me, too. Either you and your husband work out whatever the real issue is here, or you're going to find yourself at the end of the road before you know it. Counseling may help with caregiver burnout, if that's in fact what's going on here. It may help with some other issues, too. So go do that.

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                    #24
                    I don't know if we really know enough to write the relationship off so soon. I found the way he handles this situation totally unacceptable, and was feeling pretty offended, but we don't know if there might be extenuating circumstances – obviously some other issue – that might be addressed and resolved.

                    Regarding caregiver burnout, I didn't get the sense that he does a lot of caregiving, though obviously I could be wrong. Again, I hardly think transferring a wheelchair counts as much of anything if it's not physically challenging.

                    But I think we should give the guy a bit of a break, let him think about what else might be going on that maybe some good communication could resolve. I wonder, Firesky, if you might invite him to float any questions/concerns/issues in other forums where he could be anonymous and not linked to this thread, and see if he might be able to work out whatever's going on. I think we are all right now feeling pretty defensive of you, but I think we also would be sympathetic to any difficulties or fears he might be experiencing.

                    Or yes, counseling.

                    And YES, please get medical attention for your new things. None of that is trivial, and you never know what might be helped, or could be stopped.

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                      #25
                      Well a few things kind of jumps out at me...

                      In another thread you say you have a 24 year old son that you raised mostly on your own but you have been married 20 years.
                      https://www.carecure.net/forum/showp...2&postcount=14
                      You have had a muscle wasting disease since you were 15 so your husband knew you had these issues when he married you and your son for better or for worse. You said you just switched to an electric wheelchair so I am assuming that he is getting a manual chair out of the back of the car and not the electric.

                      I think there are some underlying issues here that we don't know about and it is not just about getting your chair out of the car.

                      I assume the reason for the separate bank accounts are the garnishments you are talking about but usually a married couple has a joint account.

                      What I don't understand is if you have seizures which renders you unable to drive and you have had this other condition since you were 15, have you worked any of those years to be entitled to disability payments? If you worked and paid into the system you would be entitled to Medicare which could help with your expensive insurance you are having to pay. $3,000 a month is rediculous for insurance....

                      Anyway forgive my bluntness but the husband sounds like an ass. My recent dealings with the opposite sex has jaded me so I have no time to deal with asses and people who treat others like shit yet call themselves loving, caring, and sensitive. He also sounds a bit irresponsible from what you describe.

                      I would not use my school money...when he tied the knot, he agreed to keep the gas paid. Take care of yourself and see a doctor if you need to.
                      T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                      My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                        #26
                        I too have a muscle wasteing disease, my arms should be huge after rolling around fishin' in this chair, but alas, their skinny as hell, but strong. Just keep on plugging, a counselor may be the answer, or maybe it's just time to be on your own ?? . Good luck(have you gone to a rheumatologist)

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                          #27
                          Thank you all for your comments and support. I got my husband to take a look at the thread - he says he'll have to give a few days' thought to it before he can tell me whether his opinion has changed. He has been better about helping me the past few days, though, so I'm hoping it made an impression.

                          Several people had asked if DH might be having issues with my disability. Apparently, it's the opposite - in spite of the wheelchair making regular appearances in my life (and 9 mos. last summer when I couldn't use one arm!) he'd never even NOTICED it! He told me before reading the thread that, even though he has lived with me for 20 years, he has never thought of me as being disabled - just "inconvenienced". (Not sure what he thought a disability IS if he doesn't think it means "inconvenience," because I think that's a pretty good definition!) If I hadn't read Katja's post on getting a stairlift, I never would've believed he could really have overlooked it, but as it is I'm giving him the benefit of the doubt. He also questioned why, if I'm not disabled, I'm not getting money from the government. Random had asked about that on this thread also. Fact is, I don't have the work history to qualify for SSDI and I DID receive SSI for years in Texas, but hubby gets paid just a bit too much for me to qualify now. I also got help from Voc Rehab with school, but there were a LOT of hoops to jump through just to get tuition covered, so I decided to do loans like every other college student. Hubby and I have an agreement that they can be used for my own needs, like medical bills, clothes, medicine and other things I need, and that way he doesn't have to try to keep track of what my bills will be in order to work them into the budget. Basically, he pays rent and utilities and buys gas for the car, and I am responsible for paying for anything else I need from my loans.

                          Darkeyed_daisy had asked about me being married 20 years, but raising my 24 year old son on my own. Basically, the situation with my husband hating to take care of someone else extended to taking care of a child. It's not that he doesn't just like to take care of ME, he doesn't like to take care of ANYONE. So I stayed home and handled all the parenting, and he made the money. My son has bipolar and is on the autism spectrum in addition to other mental health issues from his biological father, so he wasn't an easy kid to deal with. It's possible that my son's issues were what kept DH from noticing that I was disabled - it was really intense and everything pretty much had to revolve around my son until he got out on his own. (Something the professionals didn't think he'd ever be able to do! ) I do have to give my husband props for sticking it out. He could've walked out and left us - my son wasn't even his biological kid, and DH put up with a LOT from him. He might not have been the perfect dad, but at least he was there, which is no small thing nowadays.

                          My husband won't see a counselor. He's sworn them off, but I'm hoping he'll come around in time. And I'm seeing one on my own, meanwhile. I'm still thinking over whether this relationship is going to work out...a lot will depend on whether DH's change in attitude stays. I've got a rheumy appointment set up for the 6th - hopefully, he'll be able to do SOMETHING helpful. Wish me luck!

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                            #28
                            Good luck, Phoenix!

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                              #29
                              ???

                              Im worried that you using your school loans for other things will come back and bite you very badly......

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                                #30
                                Originally posted by dispatchjen View Post
                                Im worried that you using your school loans for other things will come back and bite you very badly......
                                Using the loans the way i have, for living expenses, is allowed by the rules of the loans, so I won't get in trouble for that. But I'll end up with a lot more debt, that's sure. Since it'll be a second income, and we're used to living on one income, it should be ok. I think. If we get divorced, though, that will make things harder although there's a lot of ways to reduce payments if I need to.

                                I'm just hoping jobs will be available when I finish! It'll be a while before I finish - have to get an MA, and then a PhD - so if I am lucky, the economy will recover by then.
                                Last edited by PhoenixFiresky; 1 May 2011, 5:46 PM. Reason: Add smiley

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