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Thread: new caregiver

  1. #1

    Unhappy new caregiver

    Hey i am a wife, and caregiver for my husband who has a incomplete sci for 15 years first sugery they used his bone from hip, all collapsed on spinalcord compressed it in c5,6,7, had second surgery to decompress and used titaniumm, but leaving t1 inpinched,for 15 almost 16 years in nov. he has done pretty well up until degenerative changes in april this year, altho 3 yrs ago a test was performed its called a tilt bed test and he shut down in a 45 degree angle,dr said there was weakness and slow blood flow back behind his heart from cord injury and he had to have a pacemaker, and now more changes in spine was having burning pain from neck to elbows dr ordered malgram no mri because of pacemaker 3 days after test he got a brain bleed in the spaces of brain,he couldnt get the headache to go away from day of procedure, and then the results of malagram came about 4 days later 2 areas narrowing in spine where the titanuim is attached at top and bottom, but t1 was already inpinched, they dont want to lift a knive because he has several levels of injury we wait until he is weaker in legs and arms worse than wat it is now, t1 is hard to get to will have to cut lik they are doing heart surgery doc says he may not walk again after 3rd surgery, husband didnt want anymore surgery but doc told him he would advice him to do something when these areas close off this is a very stressful time and wait we are to let doc know when he is weaker , but he has started falling this week twice seems one leg is going out at times we are scared now. im very sad he is very angry he feels so bad, mixed emotions, we feel like we are waiting for for the other shoe to fall, we have alot to be thankful for we were told for 2 years in the beginning this day may happen they didnt know when, thanks for letting me vent here,

  2. #2
    It sounds like you have been through hell and back.
    I understand why you both have mixed emotions. Vent away my dear.

  3. #3
    Welcome to CareCure, and yes, as Linda says - vent away. Living with these issues is so tough and loving caregivers are saints in my book.

  4. #4
    Senior Member Timaru's Avatar
    Join Date
    Apr 2006
    Hampshire, England.
    Quote Originally Posted by Bonnette View Post
    Welcome to CareCure, and yes, as Linda says - vent away. Living with these issues is so tough and loving caregivers are saints in my book.
    ...... and mine, welcome!

  5. #5
    Hello "Peacegirl_11,"
    Welcome to the Care Cure Community.

    What an horrific set of circumstances you and your husband have endured. This community is a very good place to vent the kind of frustration you have and are experiencing.

    As a caregiver, you may appreciate becoming a member of the private member forum "Caregiver's Forum." You can become a member by accessing your user control panel ("User CP") on the darker blue row just below the Care Cure Community logo. Once there you can apply for membership to the forum under the networking tab or contact the moderator Obieone by private message. The Caregiver's Forum's members are a compassionate group and know where the rubber meets the road daily in caring for their loved ones. Please join us.

    Take care of yourself, along the way.
    NL (GJ's wife and caregiver)

  6. #6
    Thank You all for understanding, because you really do! Thanks for the advice gjnl will do.
    Last edited by Peacegirl_11; 10-14-2011 at 11:02 PM. Reason: adding info

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