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    Love you all.... xoxoxoxo...


      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; 23 Mar 2011, 12:56 AM.


        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,

        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.


          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.


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


              I'm a c4 and and my wife of 18yrs has been both my caregiver and spouse. She has gone burnout because of no other help, and I can't explain enough to new injuries that your spouse can do caregiving duties, but not all duties. It's not a pretty site seeing your spouse losing their mind because they need a break, but you still have to have the help.

              Chris's post nails it!
              C4 incomplete since 1985


                Thanks Crppld. Your post hit me hard. I mean I really do think I have reached the point of caregiver burnout. I am trying every thing under the sun to get help free/discounted/or paid. However the paid part is really hard due to the financial situation we are in. I am still plugging along, but its harder and harder every day. I love my husband dearly and feel completely ashamed of feeling so tired, helpless and confused lately. I wake each morning thinking ok, this is going to be better today and then nope...say shit different day.


                  ((((Lisa))) I'm right there with you sister. I just was getting things settled and told myself tomorrow would be better.


                    Another gimp weighin' in...

                    Ok... as a gimp, I'm going through a bit of this mess myself right now. My long term boyfriend of six and a half years (tomorrow), is beginning to drive me completely mad over my disability issues. The strange thing is I can live completely independently, and had so the years injured before we even met. The house we live in is my house, and due to unemployment issues where we live (and what he does for a living), I've been paying all the bills. I really don't know if it's guilt on his part for not "taking care of me" or him seeing me struggle with some stuff. I know he means well, but no matter how much I try to talk to him about the issues, he feels he has the most valid point of view and just blows me off.

                    The biggest fight we've had lately, and I do mean fight, is what I should and shouldn't be doing. I guess I should give a bit of background on the subject.

                    I'm 29 years old... 30 this month. I have an incomplete T8 injury that has given me a fair amount of paralysis to deal with, and I use a chair for mobility. I can stand on a good day, but gimpin' around on my feet is a bit of a reach... even with forearm crutches. My biggest limitation is pain.

                    Our fights lately have been over what I should and should not be lifting, doing, and whatever else he thinks will cause me more pain in the long run. Now, having been injured over eight years, I know by this point what I can and can't get away with doing. I know what kind of extra pain I can expect later from lifting this, doing that, or trying something else physical. The biggest thing that he doesn't understand is that even if it's going to hurt like all hell tomorrow, it's sometimes worth it for me to be able to do something for myself, without having to ask for help. He seems to think I should have him at my beck and call, and that's just not me. I'm a bit of a stubborn southern woman.

                    Now, don't get me wrong. I'm not a complainer, and I don't drag him into the messes that I can sometimes create for myself. Most of the time, I don't even share that I'm in any pain, let alone how much pain I really am in. I can't really know how hard it is for him to see me in pain, but I can guess. With me, it's a regular thing. I'm going to hurt whether I do something "stupid" as he would say or not. He doesn't seem to accept the fact that if I feel that I need help, I will ask. I'm not stupid enough to push my luck on bad pain days.

                    There are also things that I won't talk to him about regarding disability issues. There are some problems with him understanding that not all nerve connections can be built upon and magically grow back. Another thing is some things, I just don't think he needs to be bothered with knowing. I'm still waiting for the day he walks in the bathroom while I'm doing my bowel program and asks, "Ok... what the hell are you doing, and why do you look so guilty?!" (I have considered talking to him about it but with the way he reacts to other things, I've just avoided it.)

                    Now, don't get me wrong. He's an amazing man that I love with all of my heart and would do just about anything for. You're just getting my frustrations here. For the first time in my life, I'm actually thinking I might end up getting married. (I had no interested in the idea up until this past year.) He just thinks he knows what's best for me. He may, physically... but it's the mentally that drives me crazy more than anything. I guess a lot of it is due to the fact that I sometimes have to prove to myself that I can still pull off things that I probably shouldn't be doing to begin with. :: laughs:: I just wish he would accept it for what it is and stop throwing a fit about things that he couldn't change if he tried. You'd think he'd know me better by this point. I can't honestly call him a caregiver, but I sometimes feel like I have to beat him off of me with a broom to get him to let me do the things that I can and want to do on my own. It's beginning to become more and more of an issue lately, and I really am wondering if it's going to be something that'll slowly push us apart over time. I don't think he has any idea how much it is affecting me.

                    The best advice I can give for any caregiver is listen. Try to put yourself in the other person's shoes. Even if you can't fully understand, try to put yourself in their situation. Role play if you have to. Try to understand the guilt the person has, just knowing they have no choice but to ask for help in some situations. I generally do everything for myself, but still have that pain of guilt when I ask him to pick up something crazy heavy because I'm having a bad day. I don't want to bother him. I don't want to pull him from what he is doing. I couldn't imagine completely relying on someone for all of my care. Just asking for help at all is a big thing for me.

                    I never felt like I had anyone I could relate to on here. (I've been a lurker for years before I actually signed up last November.) The walkers on here don't have the mobility issues I have. The complete injuries are so different than mine (I still have some movement and sensation), that even thinking my case is like theirs is just screwed up on so many levels. Believe it or not, I finally found someone that has VERY similar issues to mine. I never expected to be able to relate to someone with CP more than someone with a spinal cord injury, but it has been a hell of a blessing. I finally have someone I can talk to about things that I had no one to talk to about before. Hell... just dealing with some of the sexual creativity issues alone has gotten to me more than I care to admit. It's nice to have someone to bounce things off of that actually understands. I've found that I can be more open with him than I have ever been able to with anyone else. (disability issue wise) So, please don't take him talking to others that can relate as a bad thing. My friend has basically saved my sanity. I know if something "odd" comes up that I can't figure out, between the two of us, we can, when most tabs have never been forced to be that creative.

                    Linda, if he's on pain meds, I could seriously see this being the problem if he never had memory issues before. I've been on crazy levels of Methadone and Oxycodone for years. (embarrassed to admit the levels so I'll let you guess) I'm now going through the end of the withdrawals (I hope anyway), and all the memory issues I associated with my accident's tbi, I'm seeing were just the meds. Post-its were my best friend for eight years. I had to make lists for EVERYTHING. I'd go to another room to get something, and by the time I got there, I'd forget what it is that I even wanted. If I were you, I'd talk to his doctor about the issues, and see if a different pain med may affect his brain differently.

                    It breaks my heart to see so many people having to deal with such crappy situations. I can only wish the best for each and every one of ya'll. My boyfriend calls me an incurable optimist, and continually tells me how irritating it is. I know that tomorrow won't always be better than today, but it is the best way I've found to cope with things. I can't guarantee that tomorrow will ever be better. It's more the hope that keeps me going. I hope some of ya'll can find the hope I have too. I'll leave on that note.

                    Please forgive the huge post. I don't know if it'll help me more, or the others that actually read it. Either way, I think some of it needed to be said.

                    Here's wishing for a better tomorrow. ;-)


                      (((hugs))) Thank you for such a heartfelt post. It really did make me stop and think about things. I mean David and I have had a good week, getting along great. I think the nicer weather is really helping. I know myself personally I have alot of other things going on that don't have to deal with his MS but just things that he would have been able to do or at least help with and is unable to now. Thats just gotten to the point of unbearability lately. And the lack of help is down right irritating not from him but from anyone. It has caused me to be snappy and he is snappy right back to me. He used to be the one to put his arms around me and tell me it was going to be ok, now its me telling him it will be ok (when I really don't know sometimes) But in the end it all works itself out.
                      I really suggest you invite your boyfriend here or at least print out your post and let him read it. He sounds like a super great guy who is probably dealing with his own issues of guilt, shame and sorrow from not working, you taking care of him, etc. etc. Your post hits on alot of great points and maybe if he reads it he will have a better understanding too.
                      Always wishing for a better tomorrow


                        MSWIFE1 I already hit on some of my response in my dream thread. Although, I left the relevant points for this one.

                        My boyfriend is the stereotypical Italian Yankee that grew up in the Bronx. To be honest with you, I still wonder how we ended up together. :: laughs:: He's toned it down a lot over the years and can now show the softer side of himself... at least with me anyway. I had told him from day one that he shouldn't even consider asking me to marry him. I'm not the marrin' type. I've never cheated on anyone I was ever with. I just don't think a couple needs a piece of paper to prove their committed. If I wasn't considering having a child, I'd probably never get married. I guess I have a little hippy in me yet.

                        For some reason, no matter how much I talk to him about the disability issues, he just doesn't get it, and it generally ends up with me leaving the conversation hurt. Then again, this is the man that still goes up stairs and looks back with a questioning look as to why I'm not following him. He also regularly forgets to throw my chair in the back of the truck. I still find this a bit humourous.

                        I've tried to get him to come on this site more than I'd even care to admit, but he just has no interest. I guess I should be happy that I can openly share my feelings without the worry of how he'll react, or altering my posts to make them safer.

                        As far as little spats go, everyone needs to understand that when a person is already stressed more than they can deal with, just about every comment out of their mouth could be taken as "snippy". Personally, I know this, and on bad days, I tend to hide out so as to not snap at anyone.

                        I can only imagine how your husband must feel with his health degrading. Knowing what I went through with the meds/memory issues, I can say he's probably smart enough to recognize the issues he's having and just isn't dealing all that well. Not only that, but I'm sure he has crazy guilt putting everything on you.

                        As far as selling stuff goes, I can completely relate. I have a lil sports car that I had pre-injury that I can't bare to sell. I've had cash in hand more than once, and I just couldn't to it. Now, as I have said before, I have some function/movement below my line of injury. As long as I don't have to lift my heel off of the floor to hit the pedals, I can still drive without hand controls. My little sports car is a standard. :: laughs:: You should see the faces of people when I pull a wheelchair out of a standard. It's more of a toy than anything, and has been in the garage gathering dust (and wood chips) for too long. I haven't driven her anywhere in years, but still can't part with her. So, treat your husband's feelings with care. He's had a lot to accept and deal with too.

                        You are also pushing yourself way too hard. You can't expect to be anything but worn down and stressed at this point. If I can give you any advice, please try to bond over having the same feelings... even if they're due to totally different reasons.

                        I know there are some things that I can't talk with the boyfriend with and expect him to understand or relate at all. I can only hope ya'll's relationship is different in that matter. Try to get some of the feelings out... from both of ya'll. Openness in any relationship can only be a good thing. I just happened to snag the one man that refuses to try in some matters. I can't even get him to read up on the subject of spinal cord injuries. I'm lucky that my issues aren't bad enough to make that all that much of a problem. I just still feel so alone when I do have issues, knowing that I can't talk to him about them.

                        I'm beyond lucky to have found my new friend while sick, going through withdrawals. We now talk daily, and I'm doing much better, just having someone to vent to. It's amazing how getting some things out can help over all. Hell, just a hug does me wonders.

                        Keep your chin up. I'm sure you're much stronger than you'll ever realize. (((MSWIFE1)))


                          You are amazing. I really enjoy reading your posts. You are very insightful. David doesn't talk much about his illness nor does he want to read about it or anything, he just wants to carry on like he's normal. And I respect that in him, however there are so many things that he can not do. All of which we are working on trying to find different outlets so to speak. You are absolutely correct though, my main problem is that I am completely worn out and stressed. Our business officially closed today and I finally broke down and literally cried over it. As much as I want to tell my self its for the best, I feel like I just lost part of my life.


                            Wow, MSWIFE1. Sending you a hug on a message board just seems so mediocre right now. I sometimes wish I could reach right through this monitor of mine. I know you're right on the other side, yet so very far away. Just know you and your family have been in my thoughts.

                            I'm so sorry you're having to feel the loss of something that's been such a large part of your life for so long. I can honestly say that I felt such a loss when I woke up in the hospital, after my lovely accident, and it finally clicked that the military wouldn't touch me with a ten foot pole. The funny thing is that bugged me more than the accident and it's end result. I knew I could handle that. I just had a hard time accepting that the next twenty some odd years had instantly been rewritten. I wouldn't want anyone to ever have that feeling.

                            How is your daughter and her husband taking things?

                            Even with as hard as it is, I know you know it is for the best. I can only hope that in due time, the pain will fade, and you'll be able to recognize how much that one worry off of your plate can and will change things. When you're drowning, even the smallest bit of help can make all that much of a difference in the long run.

                            As far as your comments, I'm touched. I must admit, I have a lot of spunk left in me yet. Although, amazing is a bit of a reach.

                            I'm glad to know that my crazy long posts aren't driving everyone mad. I almost felt as if the post was too long to send. When I reread it, I couldn't find anything that I could rightfully cut out and still get my feelings and thoughts across. Long posts from me seem to be becoming a bit of a pattern lately. I guess part of that is I don't want anything I say misunderstood because text could go many different ways when you can't see the person's face at the time. That, and I've always been a hell of a typer. If I had to peck, I know my posts would be a lot shorter and straight to the point.

                            I guess I'm more surprised that someone enjoys my writing style. I've never shared my head like this without feeling I need to alter my writing to make things safer. I guess we are our worst critics, huh?

                            And once again, if this post isn't long enough, I'd love to share the enlightenment I had today. I finally got it out of the boyfriend why he's so freaky about me doing what he calls "stupid" things, and why he picks at me for it off and on all day, every day. I just had to get him drunk to get him to talk about it openly I guess. :: laughs:: Men and beer, huh? For you to fully understand, I have to share my experience with him today.

                            This morning, I had to make a run to a friend's house. It's a good hour there and back. So, when we go, we usually don't stop anywhere because an hour's driving is enough. On our way, I look out of his, the boyfriend's or more often than not, referred to as "the old man's" window. (I am always the driver. I'm a horrible passenger since my accident.), and I see this tacky little traveling carnival and my eyes light up. I didn't see any rides moving. So, I didn't say a thing.

                            On the way back, the ferris will was going. I turn to the old man, and I ask him if we can stop. We always make decisions as a couple. I really don't have to ask for permission so to speak. It's just a mutual respect type of thing. He obviously sees the playful sparkle in my eyes, and he couldn't turn me down. At this point, I just wanted to be in the atmosphere of fun. With the withdrawals, I haven't had much fun in months.

                            We make our way in, and I look up to see these rides... spinning... flipping... caged death traps as my mother would have referred to them... the rides that I had always liked the most. I suddenly realize that I have a grin from ear to ear on my face, and I look up to see the boyfriend looking down at me, reading my mind. I couldn't leave without at least riding one ride. No matter what pain in the long run it would cause. He only asked me, "Will it be worth it with the pain you'll have to deal with tomorrow?" Grinning from ear to ear, I responded with, "Hell, yeah! Can you honestly ask that question without already knowing the answer?"

                            Note: I haven't ridden on any crazy rides since at least two years before my accident... over ten years at this point.

                            I was in for the shock of my life. He didn't fight me! I wasn't going to say anything at the time. Hell... I didn't want to jinx myself. :: laughs::

                            So, we go on this crazy ride called The Zipper. It flings you around a tall, narrow center in two seater cages. The cages rock and flip over and around, and I know it'd be crazy stupid for me to even get on it, but I just couldn't help myself. At one point, the operator had our cage flip twelve times in a row! I was cracking up the whole time, and even had to mention that it reminded me of the wreck... sky, gravel... sky, gravel... over and over and over. I'm surprised it didn't mess me up mentally, but I was laughing so hard it didn't bug me at all.

                            After we go on some crazy rides that flip, swing, and roll, we decide to go home. We both decided to get something to drink because I know with my pain issues, it'd be the only way I could actually get to sleep tonight.

                            Now, I'm not an alcoholic by any means, and I don't believe in drinking away your problems. I just find that after I dropped all the opiates and muscle relaxers, every once in a blue moon, it's nice to have a break from the pain.

                            We start to drink, and after he's had a few drinks, I had to ask him. Why the hell didn't he fight me over going on the rides today, when he fights me for messing with the dog's full water bowl. Isn't flinging myself around on a crazy ride harder on my back than refilling the dog's water?!

                            He finally told me. If it's something I really want to do, he can't hold me back. When it's something that he doesn't deem "worth it" he has to say something. I had to explain that doing every day tasks are just as worth it to me as doing something crazy stupid like I did today. Just because it isn't a once in a ten year period thing, it doesn't mean I don't want to do it just as bad without getting grumped at for it. I don't know if it's pure stubbornness, the fact that I know I can do it, or just the fact that I'm not the type to ask for help. It's probably a combination of the three.

                            He's a lot like the average spouse. If he sees me struggling with something or he sees that it'd be so much easier and faster for him to do it, he wants to take it away and do it for me. What he doesn't understand is that I don't want everything done for me. If I was like that, I'd be living with my mother. (She's ten times worse on the subject.)

                            I've accepted the fact that some things are going to be harder and take me longer. As long as I can get it done, I can deal. Hell... all the more time to enjoy the roses, huh? (If one more person says this about me having to slow down, my head is going to explode.) :: laughs:: I'm sure someone out there can relate.

                            Anyway, I can't now be all that upset with him trying to stop me from doing things. It wasn't EVERYTHING. It just seemed that way because around the house, lifting this, and moving that isn't something that he thinks I should have to pay for later, and there hasn't been anything crazy that's come up that I've really wanted to do. So, I wasn't seeing that he would let me do some things without a fuss.

                            If I could just get him to open up more and actually talk about things, it wouldn't have taken six and a half years to figure this out. Now, I'm not saying it won't drive me mad when he catches me in the garage working on something and starts to fuss, but it did make my day.

                            Maybe I can get through that Yankee noggin' of his yet.


                              Hi this is my first time here and first post- I am feeling opposite and like I am going to loose my mind! My boyfriend just got in accident on easter and his family wont allow me to see him in icu. I need to help him be there with him I am going nuts someone please help me


                                Why won't they let you see him? I don't really know how to help, but do understand how terrible this must be for you.