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Thread: Rage and abuse

  1. #1
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    Rage and abuse

    I'm feeling trapped and abused. I do everything I can to make Paul (not his real name) happy and comfortable. He is a year and 3 months out from accident; incomplete quad needing 24/7 care. I worked for him for 10 years and was his best friend before accident. I now pretty much run the "get Paul better foundation". We have 5 caregivers, house staff, etc. He was very successful businessman before accident. His rage at times is over the top and the abuse he lays upon me has lately had me in tears and feeling just awful. I don't mind the rage but the abuse is so personal and so wrong. It is now three days in a row and I just can't take going in today. I love this man with all my heart but can't seem to get past this latest bout of abuse. He called and left a message apologizing (which he always does) but I haven't called him back. I don't deserve this constant battering. He is unbelievably mean to me; he is mean to some of his caregivers too. He says really terrible things to me and I do everything I can to not provoke one of his rages, to no avail - which is why I feel trapped as well. Yes, I have thought of quitting but there is no one to take my place.

  2. #2
    Senior Member darrel's Avatar
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    sorry to hear this..but don't take this the wrong way.you said that there is nobody to replace you? I am at a loss here for I was brought up knowing that in the work field that any one can be replaced..do you remain loyal to this person out of guilt or devotion? and has this person been left alone for a while to understand what being alone is really about? you stat that there is some one there 24/7 if he is incomplete he needs to have some space.. it would drive me nuts to have some one hovering over me 24/7..I am an incomplete with minamalmovement but I still have my time..I have been out in my boat over night by myself..it hurts me but I do things like this mainly to have my space..I have a shed that I try to do wood work in..sometimes I need help but mostly I am independent I mainly need someone to help with my hygene and other odds and ends..try to give hime more space make him be come more independent..you both might like it better..

  3. #3
    Quote Originally Posted by beherenow
    I'm feeling trapped and abused. I do everything I can to make Paul (not his real name) happy and comfortable. He is a year and 3 months out from accident; incomplete quad needing 24/7 care. I worked for him for 10 years and was his best friend before accident. I now pretty much run the "get Paul better foundation". We have 5 caregivers, house staff, etc. He was very successful businessman before accident. His rage at times is over the top and the abuse he lays upon me has lately had me in tears and feeling just awful. I don't mind the rage but the abuse is so personal and so wrong. It is now three days in a row and I just can't take going in today. I love this man with all my heart but can't seem to get past this latest bout of abuse. He called and left a message apologizing (which he always does) but I haven't called him back. I don't deserve this constant battering. He is unbelievably mean to me; he is mean to some of his caregivers too. He says really terrible things to me and I do everything I can to not provoke one of his rages, to no avail - which is why I feel trapped as well. Yes, I have thought of quitting but there is no one to take my place.
    This is typical, however that doesn't make it right. I feel your anquish. My son is 5 years SCI C5 INCOMPLETE. We often get in "shouting" matches and quarrels because he insists on having something his way, even if it isn't the right way. I used to put up with it, but have learned that it doesn't do him any good (let alone, myself). You have to confront him and let him know that YOU DID NOT DO THIS TO HIM, and he has no right to treat you OR anyone else this way. He needs to understand that YOU nor anyone else HAS to be there. He definitely needs counseling and the sooner the better. Keep in mind that you do care for him and are sympathetic to his situation, but you cannot do this alone, there are resources out there to give you a break, eg.~respit from the agency. Those are hours given to the Caregiver paid to the agency by Medicaid/Medicare. They are not HIS hours, they are YOURS.

    It has taken me 5 years to learn what I just told you and I got to tell you I am 6'4" and thought I could carry this burden myself and it is simply "NOT SO". I am and have been just as Depressed as he is and often more so. If he is not a member of this site, I suggest he get set up as one so he can see and know that others (many) are in his shoes and some even worse. You have taken that step and let me say, you are not alone either, all of us are here for support from people who understand. Feel free to PM me or email me if you would like to talk more. Best wishes and my thoughts and prayers are with you, I AM HERE NOW!
    This time you gave me a mountain, I will see you on the other side.
    Caregiver to son SCI-C5-Incomplete

    David

  4. #4
    Quote Originally Posted by darrel
    sorry to hear this..but don't take this the wrong way.you said that there is nobody to replace you? I am at a loss here for I was brought up knowing that in the work field that any one can be replaced..do you remain loyal to this person out of guilt or devotion? and has this person been left alone for a while to understand what being alone is really about? you stat that there is some one there 24/7 if he is incomplete he needs to have some space.. it would drive me nuts to have some one hovering over me 24/7..I am an incomplete with minamalmovement but I still have my time..I have been out in my boat over night by myself..it hurts me but I do things like this mainly to have my space..I have a shed that I try to do wood work in..sometimes I need help but mostly I am independent I mainly need someone to help with my hygene and other odds and ends..try to give hime more space make him be come more independent..you both might like it better..
    Hello darrel old friend ,

    I think what she said was she/someone has to be there 24/7 which doesn't nessassarily mean "on top of him". It just means he might not have the mobility you have. In my sons case, he can use his arms and feed himself (with a brace to hold his utensils), but someone has to fix that plate and put it in front of him. As primary caregiver, I have to be here 24/7 or make sure someone is to watch for autonomic dysreflexia, diabetic siesures, BP, etc., etc. By law if something happens to him in my care, I can be charged with neglect/abuse. Understanding that we all need our own "space" and privacy, we also need to understand that the caregiver can and does feel just as "trapped" as the dis. I have in all respects given up my life for my son (not that it was much of one ) and with NO regrets might I add. Once he is in his chair, or in bed for the night, he is good to go, but he still needs someone near in case something happens.

    One of our biggest arguement is over him wearing diapers, he insists on not wearing one to the point of getting a nurse to tell ME that he doesn't need one. My reply is, you're not the one who has to clean up the MESS when he goes unexpected (which happens often). As far as space is concerned, I give him as much as this one bedroom apartment will allow, which means, I sleep on the couch. I will go out for a couple of hours when possible, giving both of us a break. He now goes to HUF during the day Mon.-Fri. 8am-3pm, giving me a chance to finally seek some employment.

    The fact is, it's tough on both sides (as I'm sure you know), but we do what we can and hope for the best, right?

    Talk to you soon friend, have a good day .
    This time you gave me a mountain, I will see you on the other side.
    Caregiver to son SCI-C5-Incomplete

    David

  5. #5
    Senior Member darrel's Avatar
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    Oh, that is okay, I pm her and said that I thought that she might want to chat with you..I did injoy our chat..

  6. #6
    I have little advice other than suggesting he be put on medication.

    I'm sorry you're having such a difficult time as well as for him.


  7. #7
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    Things are complicated. Of course, everyone on this site has special complications. I can't/won't leave this job for so many reasons. I honestly think it would be bad for his recovery if I left. He depends on me, more than anyone, for his sanity and to keep things from falling apart. Unfortunately, this is at the expense of my sanity. I am the only one who handles - and is allowed to handle - his finances. He doesn't trust anyone else to handle his finances except one other person and she isn't available to do it. He is not open to trusting anyone else. I have handled his finances for over 13 years - before and after accident. He has been royally screwed financially by people he thought were his friends, family, and business associates (this is after he became a quad) and I understand his distrust. I have slipped away for short periods of time over the last year or so and have regained some sanity while on these vacations. I will be slipping away again over Christmas. When I come home from these trips, the pile up of work is quite overwhelming. I don't have to tell you guys the vast amount of paperwork involved with this situation. I cut about 75 checks a week, no kidding. And deal with the house, household help, the caregivers, health insurance, disability insurance and all the mistakes they make, the cars, the dogs, etc. as well as be a willing advocate for his continued recovery. He is not open to getting psychological therapy because he doesn't think he has a problem. He can't be left alone much cuz he has severe pain much of the time and 5 minute intervals of alternating hot and cold packs. He needs hoyer lift transferring and has indwelling foley cath. He can't eat or drink by himself yet. He has us all held hostage pretty much. This is an unmarried guy with no immediate family nearby. He is not into medications except stuff for spasms.

  8. #8
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    I am so sorry that you are having to bear the brunt of his frustration, and for what it is worth, I think he needs some professional counselling. It is normal for him to be frustrated, it is normal to be angry as hell about his new body, but that doesn not give him the right to take it out on other people, especially the one who is there for him more than any other. I have a friend who is a therapist, and she often says that it is OK to feel (fill in the blank here) anything, because humans do feel. What is NOT OK is to act on those feelings if they create difficulty or abuse towards others. I have one other comment about what you mentioned were five minute alternating hot/cold packs. He wouldn't get that much attention in a hospital! Surely there has to be some pain meds that could help him. It is fine to be resistant to meds if you can figure out another way, but his way seems to have you running constantly for the packs, which is a little self-centered and probably not the most helpful way of dealing with the pain either. Good luck, and keep writing here for opinions.

  9. #9
    No one deseves to be mistreated....not the patient nor the caregiver. I think if you are determined to stay then some counseling may be needed.

  10. #10
    Quote Originally Posted by darrel
    Oh, that is okay, I pm her and said that I thought that she might want to chat with you..I did injoy our chat..
    I did too, my friend, and hope to do it again soon.

    "beherenow"....you've got to put an end to his abuse, if you're all he has, give it right back to him as harsh as he gives it to you. Quit jumping through hoops for him, as long as he has you or anyone else doing this, he will never stop; and why should he? YOU put a stop to it for everyones sake. He has to understand that you are there because you want to be not because you have to be!!! I believe it's called "tough love", but in this case it sounds like your only option.
    This time you gave me a mountain, I will see you on the other side.
    Caregiver to son SCI-C5-Incomplete

    David

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