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    wife care giver

    Been taking care of my husband (c4 complete) since his accident 8 years ago, finally was approved for a care giver for 4 hours a day one year ago. I don't want to complain but I'm so tired of feeling guilty. I want to know how to keep doing this and feel like I matter. I hardly go any where because I feel bad he can't but I have given up everything and I need help to stop feeling like this. What do you do?

    #2
    You do need to get out of the house from time to time. My uncle used to be the full time caregiver for my aunt after her debilitating stroke. He survived by rewarding himself with one day a week out on the town on his own. He did so by hiring a caretaker
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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      #3
      What types of things can you do together out of the house? Do you have transportation? Can you go to church or social clubs? Take a class together?? Have dinner out at a restaurant? Go to a movie?? Certainly no reason to be homebound simply due to the SCI unless he is on bedrest for this skin or some other reason.

      I agree you need to take care of yourself. Plan lunch out with friends, go to a movie together, play tennis or some other sport you enjoy, get a massage and a facial; and do this at times when the paid caregiver is there. Does he really have to have someone with him 24/7? Unless he is on a ventilator, that should not be the case.

      (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.

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        #4
        It's not about whether you can get out of the house. It's about the guilt you feel when you do. I am a wife caregiver, it's only been a year that we have been home. Yes, my husband doesn't need 24/7 care but I too feel guilty that I can freely come and go - get out of the house. I feel sad that he doesn't have that freedom. Takes the joy out of the facial, massage, what ever you are trying to do for you.

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          #5
          It may be that your husband also needs a little time apart. Injury & dependence notwithstanding, you still need to be your own people.

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            #6
            There is a private caregiver forum (membership required) that used to be quite active before the vBulletin conversions of the last 6 months. Many caregivers used to post there freely and gained a good deal of support through that interaction. I encourage you to post there and maybe we can rekindle the support for caregivers there. /forum/forumdisplay.php?90-Caregivers-Forum

            NL (GJ's wife and caregiver...Married 45 years, caregiver for for 32 years)

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              #7
              yes a year ago he got a sore on his butt right on the ischial bone from sitting that just wont heal..............

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                #8
                Originally posted by mikeandme+3 View Post
                Been taking care of my husband (c4 complete) since his accident 8 years ago, finally was approved for a care giver for 4 hours a day one year ago. I don't want to complain but I'm so tired of feeling guilty. I want to know how to keep doing this and feel like I matter. I hardly go any where because I feel bad he can't but I have given up everything and I need help to stop feeling like this. What do you do?
                I think it is best for you to separate the care taker role from the spouse role. I am a low level para not a quad so my situation is significantly different and I am sure there are somethings that you would need to assist with just to make your lives run smoothly but the professional care will allow you more freedom to not feel "on-duty" all the time.

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                  #9
                  Start if you need to by going to things your husband wouldn't like. Check out the latest chick flicks. My husband does most of my care and early on when I still got tired easily I pushed him out to a guy flick I knew he wanted to see. Things slowly got better for both of us after that. I certainly don't want him sticking around out of guilt. And you will go from guilt to feeling resentful if you don't care for your mental health too. So enjoy your 4 hours and then come back and work on how to get that man of yours healed up so you can go out to dinner together.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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                    #10
                    Originally posted by Monoski View Post
                    I think it is best for you to separate the care taker role from the spouse role. I am a low level para not a quad so my situation is significantly different and I am sure there are somethings that you would need to assist with just to make your lives run smoothly but the professional care will allow you more freedom to not feel "on-duty" all the time.
                    That's sometimes impossible.

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                      #11
                      I've been my husbands caregiver for 8 years as well. I know where you are coming from, but you do need to think of yourself too. Ask for help from friends and family. You will be amazed at how (after awhile) much good it will do you and him both.

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                        #12
                        Most of us who used to post in the private caregivers forum are in a private group I run on Facebook. PM me if you want to join us over there. - Ami
                        Wife of Chad (C4/5 since 1988), mom of a great teenager

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                          #13
                          Could you add me to the fb group? My email is mistressmom@hotmail.com. I've been the primary for my husband for 38 years.
                          I'd really like to have the support and be a positive support to othrrs as well. Sometimes I feel like I don't know how to talk to people anymore. My fault I know for not going out on my own but you all know how that goes. Lots of stress this past year.
                          "We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

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