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Spouse is tired of dealing with disability, but still loves me

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    Spouse is tired of dealing with disability, but still loves me

    I am a quad level C6, married 30 years, in chair for 24 years. Is there any other couples that are experiencing struggles as to their disability after all the years of being married. We have overcome so many obstacles and challenges in our lives together. He is sometimes feeling he is done with the dealing with the disability. He has also been my part time cae giver. He still loves me very much but is at a point where he is wondering "what about me" Can he continue living with me and all the barriers for the rest of his life? He misses the able bodied me and still wishes he could do things with me together that we used to do. He has chosen not to do things because I can't experience it with him. He says he doesn't resent me in any way. But he does resent the chair "said our therapist". How can I help him. He is so torn he feels he is damned if he leaves and damned if he stays. If anyone can help or your spouse has gone or is going through this we really need help.

    #2
    I think the only thing you can do in your situation is recognize what he does for you, thank him for what he does for you, and thank him often. Do as much as you humanly can for yourself even if its more difficult than having him do it for you. I'm so sorry that you and he are struggling. I am a caregiver-wife myself and I understand his frustrations. I never ever resent my husband but I sure as hell resent his disability, it is a real bitch! Continue talking, I'm glad he is seeing a therapist, you may want to consider couples therapy as well. And welcome to CC.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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      #3
      I'm only 3 years as a caregiver, but think "zillazangel" gave good advice.

      One thing I am wondering about is "He has chosen not to do things because I can't experience it with him". Although I know how that feels, I also think it's important that he does do things even if you can't. I watched my parent-in-laws go through that struggle for 40 years, and I think it made more resentment than needed on his part (the caregiver), which came out in a sort of passive-agressive way. Encourage to go camping, sailing, skiing, whatever with some friends. It would probably be good for both of you.
      Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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        #4
        Originally posted by zillazangel View Post
        I think the only thing you can do in your situation is recognize what he does for you, thank him for what he does for you, and thank him often. Do as much as you humanly can for yourself even if its more difficult than having him do it for you. I'm so sorry that you and he are struggling. I am a caregiver-wife myself and I understand his frustrations. I never ever resent my husband but I sure as hell resent his disability, it is a real bitch! Continue talking, I'm glad he is seeing a therapist, you may want to consider couples therapy as well. And welcome to CC.
        I do thank him every time and tell him I appreciate it. I am very independent once I am in my chair, he often has said as well as others that they don't even see the chair because I do almost everything that I use to prior to my injury. Except the obvious chair barriers.We are both seeing the same therapist individually and together most of the time. The big question I have is: you understand his frustrations, assuming because you have them as well. How do you deal and handle the feelings you have of frustrations and resenting the disability in a positive way that has you continueing to stay in the relationship. Have you ever thought about the future as we age and how long you can keep doing this? Do you do things without him that you enjoy? Do you understand where he is coming from when he says he doesn't want to go skiing or whatever because he can't do it with me. It just isn't the same to experience it with someone else and then just tell me about his experience so I can experience it through him?
        We have done a lot together, we try to experience new adventures together, we have been in a hot air balloon, went canoeing, just went kayaking 2 weeks ago, I sometimes go with him when he is golfing, I sit in the golf cart. We have been fortunate enough to go on many holidays, been on 3 cruises, Vegas 2 trips to Hawaii, interacted with Dolphins. These adventures do involve more work on my husbands part but he says it outweighs the work to be able to enjoy and experience these things with me.

        We will be empty nesters soon and are trying to focus on our relationship now and what we still can enjoy. We enjoy camping, doing things with friends, movies and walks.
        Sometimes he says he just wants a simplier life, just pick up and go not have to worry about anything. Even with all the pre-planning I do for our adventures there is always some obstacle that comes up.

        If you can talk about some of your feelings or your ways of coping and managing when it comes to disability and barriers and how you conbtinue day after day that would help too.

        Thank you for responding to our cry for help

        Comment


          #5
          Originally posted by elarson View Post
          I'm only 3 years as a caregiver, but think "zillazangel" gave good advice.

          One thing I am wondering about is "He has chosen not to do things because I can't experience it with him". Although I know how that feels, I also think it's important that he does do things even if you can't. I watched my parent-in-laws go through that struggle for 40 years, and I think it made more resentment than needed on his part (the caregiver), which came out in a sort of passive-agressive way. Encourage to go camping, sailing, skiing, whatever with some friends. It would probably be good for both of you.
          I replied to "zillazangel" post, maybe you can reply to what I posted to her as well.

          Comment


            #6
            I think it's normal for men to get to about 40 or so and start questioning their life. I've seen it over and over. Sometimes they act upon it and sometimes they don't.

            I have no advice other than to say, this too shall pass. I hope it works out.
            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

            Comment


              #7
              Lots of hard questions, not many easy answers.... but I will give it my best shot. First, I'm only 8 years into this gig, so he, at 24 years, has my frustrations times 3 potentially, but what I'm reading loud and clear is that he seems to be sacrificing some of his fun and enjoyment because he feels some sense of guilt that you can't participate. That is a huge mistake in my opinion. I TOTALLY understand that mindset, but Chad has practically flogged it out of me though. He absolutely INSISTS that I go and do things that he can't do because its ridiculous that we both can't do something just because he can't. I go to water parks with my son, I went to New Zealand for 2 weeks with a friend, I regularly go on week long vacations without him, etc. It is vital for my sanity to have a break and to NOT deny myself things that I would normally get the chance to do if I weren't married to someone in a chair. I woudl STORNGLY urge your husband to reconsider his stance about not doing things that you can't do as I think that would go a long ways towards easing his frustrations. I would go nuts if I had to deny myself things that he can't do simply out of guilt that he can't do them too.

              Another piece of advice: see separate therapists. You can see one therapist as a couple and one of you see that therapist, but its a conflict of interest for the therapist to see both of you individually and then you as a couple. I would recommend finding someone just for you, that you don't feel like they are potentially "taking sides" or you know they are getting information from the "other side". I personally would never be comfortable seeing a therapist 1:1 that my husband was also seeing.

              As for how long I can do this gig, I am learning to pace myself. I took on too much at first, trying to do all the caregiving and all of the mothering and all of the working my job and all of living life ... and that was a mistake. Now I am more balanced (although that is in large part because we finally have reliable live in help, if not for that, I wouldn't have a choice). So between having help, not trying to be perfect (my house is never overly clean lol), not denying myself fun things that he can't do, I know I can do this long term. And that equally due to Chad because he is so giving and grateful. He is the most amazing person ever, because he is genuinely supportive of anything I want to do and he insists on me doing things that will keep me mentally well for the long haul, even if I feel guilty about it.

              Now, despite all this sunshine and roses talk, I sure do get really f*cking sick of disability sometimes. Especially at night because I never (ever, ever, ever) get a break from putting him in bed. The way our caregiver works, he works weekdays and I have weekends and afternoons/evenings. So after a long day of working, cooking, being a mother, running everyone around, cleaning, and trying to carve out time to do something I want to do (last on the list!), I can NEVER (ever, ever, ever, did I mention?) just put on my PJs and go to bed. I have to get him out of his wheelchair, undressed, do bowels, bladder, move his wheelchair, plug it in, give him meds, get him water, get him arranged, set up the covers properly, and then and only then can I get started going to bed myself. Some days I would give my left arm to just flippin' go to bed like a normal person. I do resent his disability then, and I don't have any good answer as to what I do about it other than just bitch inside my head and enjoy a nice glass of wine once I get myself situated in bed.

              I hope that helps some. I guess my loudest message is that he needs to do things without you, things you can't do, even if you can't do them. Chad is happy for me when I do things he can't, he loves me very much and seeing me happy makes him happy. I suspect you love him enough such that seeing him happy would make you happy too. The key is that Chad does not in any way resent me for doing things that he can't, and if you don't resent him for doing things you can't, then there is no reason things can't get better between you. You just have to convince him.

              Good luck to you.
              Wife of Chad (C4/5 since 1988), mom of a great teenager

              Comment


                #8
                Thank you Ami et all for your contribution to this topic. It is of great interest to me. May you all allow me to put into my perspective. a personal insight from a married care receiver could be healthy to this discussion too. I find it extremely difficult to rationalize the concept of wife/husband and care giver as being as one. My anger and fear is at being dependent, the possibility of caregiver burn out combined with the roles/burdens of marriage life is always on my mind. Anyway as long as it can be done and sustained I will always see/try myself as the one who should provide and contribute to the married life (May I use the word traditional her). Hence work, providing an income for all of us to sustain life quality, working full time and even part time gives me this sense of worth even if detrimental to my own health.
                Yes I do believe that we the disabled must strive as hard as could be possible in making the caregiver role of the partner redundant as possible from the smallest to the largest of things. That breathing space for mental and physical well being of the caregiver roll is essential but I also want/believe that is also the most cherished sadly rare situations for married couples, to get away from it all, be it on a holiday somewhere else, alone intimate and share the company of one another, care giving breaks or undermines this bond. etc . to be Frank if this means time away form husband/wife to do things unable due to circumstances or time away from the partner just to relax and take a break from caregiving adds extra pressure on the role of married life itself. (If my communication is not good tell me). There is another thing on my mind too but too ashamed to mention it. As for the role of young couples, still in courtship, not tied down with a sense of already acquired bondship maturity, family commitments and children, it is a near impossible task, as emotional attachment wears off and starts to turn into a daily regime of commitment burden sholdering and responsability. In this situation I would personally advise that the plumb, self assured dowdy woman, who knows how to roll up her sleeves and not so interested in looking mirror good and sexy would be a fine catch to cherish and love. On a personal note should I come to see myself and feel it too that I am a burden to the family and hindrance to a quality life of others I see no problem in self termination out of conviction. I once had an in depth discussion with Christina about this too. I do see that it is essential for a de-bonding process from both the relationship and religious conviction and that all affected are prepared and free from guilt trip.

                Comment


                  #9
                  Peter, peter, peter .... I am offended at your suggestion that men with SCI find frumpy ("dowdy, not so concerned with being sexy") women to marry. I really think its best you just stay out of this discussion with an attitude like that. One should find the right person to marry based on the whole package, not just limit oneself to physically unattractive women because that's what men with SCI can "achieve"! And your talk of suicide ("self termination") is also completely and 100% out of place here too. It has nothing to do with this thread. Please don't drag your issues into this topic.
                  Wife of Chad (C4/5 since 1988), mom of a great teenager

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                    #10
                    Yes Peter. Sometimes listening is the best policy.

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                      #11
                      Wow!

                      .....
                      Last edited by Patton57; 10 Sep 2012, 5:32 PM. Reason: not being very nice

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                        #12
                        The best advice has already been given, encourage your SO to experience life outside of your caregiving needs. Have him do things on his own but keep the communication open. I've been with my partner for 22 years we've found it absolutely necessary for him to find interests of his own, but that doesn't mean I can't live vicariously through him.

                        Comment


                          #13
                          peterf, your inappropriate post was removed AGAIN by me, not Ami. Do not post here again with that type inappropriate comment.

                          I would advise other caregivers to join and post sensitive threads like this in the private Caregiver's Forum as soon as you can join, rather than in this forum which any spammer, troll or inappropriate member can access.

                          Thanks.

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                            #14
                            Originally posted by Ben Rolfe View Post
                            The best advice has already been given, encourage your SO to experience life outside of your caregiving needs. Have him do things on his own but keep the communication open. I've been with my partner for 22 years we've found it absolutely necessary for him to find interests of his own, but that doesn't mean I can't live vicariously through him.

                            For my entire life, I have done what I can do and enjoy. When I cannot do certain things or I have no interest in an activity, I encourage family and friends to go without me. It makes life more interesting when we are next together as we each have different things to discuss and share. I don't want anyone held back because I cannot physically do something. It's a burden on me I do refuse to carry.

                            To the OP, even couples where both are ab go and do things separately. This is not the domain of only those of us who are dis.

                            Encourage him to do the things he loves, with or without you. Find your own interests and hobbies. Find your own bliss and follow the hell out of it. If the two of you can adopt an attitude of zero guilt for having separate hobbies and interests while being supportive, encouraging and loving with each other, it can strengthen your relationship. No partnership does well for long when the partners are together 24/7.

                            BTW, if you can manage it financially, hire someone to assist you with the part-time care your husband provides for you. It may begin to put more of a spark in the relationship if the two of you relate as partners, not caregiver and person requiring assistance.

                            Keep us posted, okay?

                            Comment


                              #15
                              Thank you for your input and honesty. I never thought that may be part of him doesn't go do the things he or we would have enjoyed together because he feels guilty that he can and I can't. I really don't know if that is the case, but I am sure going to ask him. I know for me I have always felt frustrated and couldn't understand why he wouldn't do those things with friends and then tell me about the experience so I can share in his experience that way. He always just keeps saying that he doesn't want to do it with anyone, he wants to do it with me. So thinking about it now... I have been feeling guilty that he isn't doing those things he or we would have enjoyed. The therapist mentioned at last councelling session basically the same thing that I was blaming myself for his choice to not do those things. I know I told him I was scared that one day he would resent me because he has given up those things. He said he doesn't resent me in any way. Yet I still worry that one day he will, even though I have pushed him to keep doing those things and he has chosen not too. The therapist feels he has attached a line to my chair, and wont do those things. He does do some things without me, he goes golfing in a mens league once a week and usually takes a week away on his own or with his buddies, or a couple weekends away quadding or getting firewood. He is getting into horse back riding because our daughter is very involved. He has been to the mountains with her for a weekend, and we are in the process of looking for a horse for him to buy so he can enjoy it with his daughter, maybe join adult riding and start to enjoy things and still be able to share it with me as I can go with him and be there while grooming and tacking horse etc. then sharing the rest of the experience. I would never resent him for doing these things without me I have tried to encourage him to do these things for as long as I can remeber. Yes seeing him enjoy these things that could make him happy again would make me so happy because I love him with all my heart and I feel he gave up so much to be devoted to me all these years.

                              You hit the nail on the head when you talk about always being the last one in bed, always having to put me to bed after a long day at work, regardless if he has a migrane and bending doing the task kills his head. We did change that about 2 years ago, I have care givers put me to bed 5 nights a week.I have had a care giver for bowel/shower days for the last 20 years. He does always get me up in mornings and of course is my back up infortuneatly if I am having a problem with my bowels or bladder leakage. Not that it happens a lot but it does happen.

                              I am going to ask my husband to maybe join in the posts and share his feelings in case I am not quite expessing it properly. He likes to solve things on his own, but he also admits he needs to talk about it to someone who can understand, and that is someone in the a similar situation.

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