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    What if

    My husband is a C-7 for 4 years what if he will not allow me to go out of town or have a break, he feels he should be with me or I should not go. Married 14 years and the past 4
    i would rather be just about anywhere. I am not a quiter.
    He won't do counseling that is for weak people he thinks. I feel pretty weak!!!!!

    #2
    Perhaps some of the other members / caregivers will be able to provide words of advice, solace.

    Peace, Tess.

    Comment


      #3
      Its not easy but then life isnt easy, try and dwell on the good times even if there arent that many. Someone once said to me remember Spring always follows winter.

      Comment


        #4
        Everyone needs a break every now and then...with SCI involved, or not. Even just a quick weekend away can be helpful sometimes. Are you his caregiver as well? Is that why he doesnt want you to leave? or is it that he doesnt feel that its "fair" for you to take a vacation without him?

        If its the first one, I would set someone up to take care of him while you are gone, and just go...you need it....

        If its the second one, then maybe you both need a vacation. maybe getting out of your everyday groove and going somewhere together will re-invigorate things.

        I dunno, maybe this isnt the best advice, but I think that if you need to get out, then go. If you dont it gets harder and harder to be at home, and things get stagnant....just my 2cents.

        And I dont think that you are being weak, SCI is hard to deal with, for the person with the injury and their family. If you cant have even a quick break every now and then, it gets tough. And no, counseling is not for weak people...its for people who may need a little guidance within themselves or their relationship...not a bad thing at all.

        Good luck with everything, you have come to the right place to vent frustration..this board is great.

        Scarlett

        Comment


          #5
          Tess, I had to take a firm stand about taking a break. My husband and I moved from WA to TX and two months after we got here he had an auto accident. Incomplete C3-6. He is 100% dependent. I have never been the type to "need my space" but just to be able to go to a bookstore and leisurely sit and have a cup of coffee and read, or to even go grocery shopping without racing- the nearest large town is 55 miles each way. It wasn't that he minded me going anywhere, but he did not want anyone else taking care of him. I adopted the attitude that it is only temporary but if I fall apart or burn out they will be taking care of you longer than a few days.

          So- I take a week or two in June and December to go back to WA and visit my children and granddaughter. I place him in a nursing home during that period. It is very difficult for him but I know he is OK. I only left for a few days the first time and the longest 21 days. I plan to do the same in August since I won't be making my June trip this year.

          Mine doesn't do counseling either. We live in a remote area and I would pay for counseling just to have someone to talk to.

          Take care of yourself. It is kind of like being on a plane and having to put your oxygen mask on before you assist others.

          This wasn't meant to be a book, but I will share this story. I have a friend who lives in Mich that had a free trip to a resort in AZ. She invited me to go. Then another friend in Seattle invited me to go to Nashville to Fanfare 2003. I mentioned it to my husband and he just totally lost it. Crying, saying he wanted to die. So I said, OK, I won't go. The more I thought about it the madder I got. So not only did I decide to do one trip, I did them both. I wouldn't change that time away for anything. It made me look forward to coming home and gave me the rest I needed to make it until my next break. He still gets totally stressed at the idea of me leaving him in a nursing home, but now I wait until closer to the time to leave to tell him, make my plans and then do it.

          I just hired a caregiver to live with my mom who is bedridden. I insist that she takes time off and gets out of the house. I go between the two houses taking care of both so she can have a day off. She is much to valuable to lose.

          Comment


            #6
            Wow, this one got me going. Think because I am having some burnout and depression. Have you ever taken him on a vacation or on an airplane. It won't take too many times for him to decided that he misses his bed, misses his toilet, misses his surroundings. I have done all of the above with mine, and he is very happy to stay home.

            Also is your husband a Veteran. The VA has offered me respite so I can take a break. We haven't used them yet but think I will push that next time.

            Comment


              #7
              Tess, you seem understandably stressed. Caregivers do have an unbelieveable amount pressure put upon them, with many willingly doing so, to care for their loved one, but as others have said, it is so critical that they take time for themselves and attend to their own needs.

              I am wondering, however, given you stated in another post that your husband was controlling and jealous BEFORE his injury, did he also not like you to go out when he was not SCI?

              Comment


                #8
                Tess, Welcome to the forums, and to caregivers, especially. I'm sorry that life had led you to our family here, but please know that all of the caregivers here understand how you feel.

                First of all, I'd like to 'rein you in a little' - [img]/forum/images/smilies/smile.gif[/img] - I'm very glad you're posting, but it gets a little confusing when you post essentially the same thoughts in different forums - although the advice from the community at large is valuable and not to be dismissed! Your issues, as I see them, tho, are primarily 'caregiver/family member' issues, so this is the place where perhaps more of the caregivers will respond.

                You do sound like you're ready to go off the edge, but as Chick said, it doesn't sound like a problem that came on after the spinal cord injury. It's sad that sometimes behaviors tend to magnify after SCI, and it certainly sounds as tho the behaviors your husband has exhibited were present before his injury. How did you deal with them then?

                Hard question time, here goes;

                - Have you talked with him about the behaviors?

                - Does he do the same with the children?

                - Did you know that verbal and emotional abuse are just as damaging as physical abuse - the only difference is that you have a black eye in your heart, not on your face.

                - How do YOU feel about continuing the relationship? If you want to continue, what are you ready to do to preserve your own sense of worth and sanity? What sort of ground rules are you willing to lay down?

                Sweetie, tough questions, but ones that need to be asked; and please know that we're all here to help, and give you our shoulders to cry on, and cheer you on in whatever your journey may be. Please continue to let us know how you are doing, and how we can help.

                Jackie

                _____________
                If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa
                _____________

                Comment


                  #9
                  At C7 he should be pretty independent. Are you doing care for him that he should be doing for himself?

                  You may need to remind him (and yourself) that marriage is not slavery. You need space and time for yourself in order to stay sane. If he cannot do his own care, he should learn to do what he can, and you both should explore finding a good attendant who can do the rest. Then once you have this person trained, take a vacation without him. Make it just one night the first time, and stay closeby, but don't get manipulated into cutting it short just because he wants you to come home. The next time make it two nights, etc. Traveling with him may not be a solution. Travel with a disability can be somewhat stressful, esp. if he is pretty dependent and not very flexible (emotionally).

                  It sounds like he is afraid and overly dependent upon you, but afraid to admit it. If he will not get some counseling, then get some for yourself. You need to decide why you are in this relationship. No one can stay in a relationship where all they do is give...you need to get something in return as well.

                  Review these rules for caregivers (and give him a copy too).

                  <UL TYPE=SQUARE>
                  <LI>Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.

                  <LI>Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.

                  <LI>Watch out for signs of depression, and don't delay in getting professional help when you need it.

                  <LI>When people offer to help, accept the offer and suggest specific things that they can do.

                  <LI>Educate yourself about your loved one's condition. Information is empowering.

                  <LI>There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

                  <LI>Trust your instincts. Most of the time they'll lead you in the right direction.

                  <LI>Grieve for your losses, and then allow yourself to dream new dreams.

                  <LI>Stand up for your rights as a caregiver and a citizen.

                  <LI>Seek support from other caregivers. There is great strength in knowing you are not alone.[/list]


                  (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


                    #10
                    Hi, Tess

                    My favorite twelfth-step group friends used to tell me that without the element of justice, there can be no love. Fair is fair, and you seem to already know for yourself that you have every right to a little time away.

                    I can't even guess why your husband thinks he has the power to "allow" you to go out of town. You're both grown-ups, after all. Sometimes it helps me, when I'm confused about what to do, to ask myself what advice I'd give a close friend. If your best friend were in your situation, what would you say to her? Would you want her to stick up for herself?

                    Comment


                      #11
                      Originally posted by Marmalady:

                      Tess, Welcome to the forums, and to caregivers, especially. I'm sorry that life had led you to our family here, but please know that all of the caregivers here understand how you feel.

                      First of all, I'd like to 'rein you in a little' - [img]/forum/images/smilies/smile.gif[/img] - I'm very glad you're posting, but it gets a little confusing when you post essentially the same thoughts in different forums - although the advice from the community at large is valuable and not to be dismissed! Your issues, as I see them, tho, are primarily 'caregiver/family member' issues, so this is the place where perhaps more of the caregivers will respond.

                      You do sound like you're ready to go off the edge, but as Chick said, it doesn't sound like a problem that came on after the spinal cord injury. It's sad that sometimes behaviors tend to magnify after SCI, and it certainly sounds as tho the behaviors your husband has exhibited were present before his injury. How did you deal with them then?

                      Hard question time, here goes;

                      - Have you talked with him about the behaviors?

                      - Does he do the same with the children?

                      - Did you know that verbal and emotional abuse are just as damaging as physical abuse - the only difference is that you have a black eye in your heart, not on your face.

                      - How do YOU feel about continuing the relationship? If you want to continue, what are you ready to do to preserve your own sense of worth and sanity? What sort of ground rules are you willing to lay down?

                      Sweetie, tough questions, but ones that need to be asked; and please know that we're all here to help, and give you our shoulders to cry on, and cheer you on in whatever your journey may be. Please continue to let us know how you are doing, and how we can help.

                      Jackie

                      Thank you all, I have been posting in Life, I did not mean to confuse anyone by posting in 2 places, Sorry I won't do that again. Thanks again for your help.

                      _____________
                      If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

                      Comment


                        #12
                        A Caregivers Bill of Rights

                        Originally posted by tess
                        My husband is a C-7 for 4 years what if he will not allow me to go out of town or have a break, he feels he should be with me or I should not go. Married 14 years and the past 4
                        i would rather be just about anywhere. I am not a quiter.
                        He won't do counseling that is for weak people he thinks. I feel pretty weak!!!!!

                        A Caregivers Bill of Rights
                        It's your right to take care of yourself
                        I have the right . . .

                        To take care of myself. This is not an act of selfishness. It will give me the capacity to take better care of my relative.

                        To seek help from others even though my relative may object. I recognize the limits of my endurance and strength.

                        To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonable can for this person, and I have the right to do some things just for myself.

                        To get angry, be depressed and express other difficult feelings occasionally.

                        To reject any attempt by my relative (either conscious or unconscious) to manipulate me through guilt, anger or depression.

                        To receive consideration, affection, forgiveness and acceptance for what I do from my loved one for as long as I offer these qualities in return.

                        To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

                        To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my full-time help.

                        To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired older persons in our country, similar strides will be made toward aiding and supporting caregivers.
                        To ______________________________________________
                        [add your statement of rights]

                        Author unknown

                        Comment


                          #13
                          Hi Tess,

                          I'm a T-5 paraplegic and live alone.... well with my greyhound. I find it easier not to be in a relationship and that works well for me. Having said that...

                          I don't know how you caregivers do it. I don't want to take care of ME but somehow you sweet and loving people are willing to volunteer to help another. I understand that you love your significant other but you really are going above and beyond what most people would be willing to do. You are voluteering at great cost to your own freedom, and lets be honest about it, to live in a rather restrictive and work-filled lifestyle.

                          If you need a break, then TAKE one. If you don't need a break, TAKE one anyway. Get the hell outta the house and do things unrelated to your caregiving at home.

                          Don't fall for the guilt trip that your husband is laying on you. Take to heart what the others here have said. You deserve a break today and tomorrow and until you get your batteries recharged. You're gonna become resentful of your husband if he keeps laying this trip on you. You should tell him this. If he wants to keep you he's gonna need to let you go once in awhile.

                          He's the one with the disability, not you. He's doesn't have a choice in the matter but you do. Don't think for a second if the tables were turned that HE wouldn't need to take a break every once in awhile. You are there voluntarily and for reasons known only to you are willing to stay by his side through all this crap. He should be appreciative that you are willing to give up so much for him. The least he can do is wish you well on your much needed hiatus and not be throwing the wrenches of his insecurity in its way.

                          He probably feels insecure and that you may cheat on him or find someone else. Well, that's his insecurity to deal with. You have problems of your own that you need to deal with.

                          There are lots of people here who are C-5s and C-6s and are practically independent. What gives with your husband at C-7 being so dependent upon you for everything? He may need a "wake-up" call for his own good anyway. Perhaps some professional physical or occupational therapy so that you and he can get an objective assessment of his actual disabilty and limitations. And he does seem to have "control" issues that he needs to deal with.

                          I hope I wasn't too harsh but that's how I feel.
                          "Be kind, for everyone you meet is fighting a great battle." - Philo of Alexandria

                          Comment


                            #14
                            Agreed with bob c.

                            Tess - you deserve a break - take it.

                            Comment


                              #15
                              Originally posted by SCI-Nurse
                              marriage is not slavery. You need space and time for yourself in order to stay sane.

                              No one can stay in a relationship where all they do is give...you need to get something in return as well.
                              oh hell yea........ to bad so few know about all that.
                              Death and taxes

                              Comment

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