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Thread: New to this...

  1. #1
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    New to this...

    Hello. I am new to this website, but eager to meet others who are going through similar situations. My husband was injured in a car accident nearly 6 years ago. He was diagnosed with Traumatic Brain Injury and Spinal Cord Injury at the C4 level. We were in the hospital for 2 1/2 years and have been in and out of various nursing homes and other hospitals for the last 3 1/2 years. I guess what is bringing me to this website is the fact that my husband is the most stable he has ever been since the accident. He is 31 and though they said he would never be anything but a vegetable and wanted me to pull him off the ventilator and take him away from our 11 month old son at the time, and myself, I knew God had more planned for him. Currently he has feeling throughout his body, he has pretty much all his memory except around the accident, and is able to speak using a speaking trach.
    Problem is...he has been bedridden for so long. He has never gotten the good physical therapy he needs because they look at his diagnosis and say he can't be or do anything. He gets occupational therapy at the nursing home and wears arm braces to stretch out the contractures. We are both ready for a change and eager for him to gain independence. Does anyone have any ideas, opinions, thoughts, etc on this? Ask me anything, I'm open!

    Danielle

  2. #2
    Hi Danielle, You both have been through a lot, to say the least.
    Unfortunately I have no advice for someone in your situation.
    Is there a social worker at the nursing home or an agency in your area with suggestions?
    Good luck!

  3. #3
    Welcome to CareCure! I moved this to the Caregiver's forum where it will get more appropriate attention. You may also want to apply for membership to the private Caregiver's forum for more private discussions in the future.

    Does your husband have insurance? Is he on Medicare? Medicaid?? Any chance that he is a military veteran??

    If he has never had a formal SCI rehabilitation program, and has functional gains he could make, it is possible than either an inpatient or outpatient formal comprehensive rehabilitation program could be funded for him. It might take a fight, but most of the leading SCI rehab centers should be able to help you get the authorization and medical justification.

    I assume he is still in the nursing home because he has not learned to do things for himself or direct his care from caregivers. It would be critical to be able to demonstrate that the plan would be for him to come home after rehab, as most insurances (including Medicare) will not pay for rehab if the person then goes to a nursing home, and therefore most acute rehabilitations centers will not admit someone if that is the discharge plan.

    (KLD)

  4. #4
    Sorry, no advice. Just wanted to say hello and wish you both all the best!!

  5. #5
    Moderator jody's Avatar
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    welcome.

  6. #6
    As we all get to know one another better, we can help with specific questions and problems. Meanwhile, I would encourage to go to the special caregivers forum. Please ask any specific questions that you like...There are many of us here who have been in similar shoes.
    All the best,
    GJNL

  7. #7
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    We have dealt with a lot of social workers, all of whom are polite, but don't have the same belief I have in my husband. Everyone seems content to just let him live the rest of his life in the nursing home, and he is only 31. Thanks for your concern.

  8. #8
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    He is on both Medicare and Medicaid. I know that they would want to send him home after he is through with therapy. That is why I am beginning to research things. I have never really had anyone direct me on this type of stuff besides to say things are impossible. My seven year old and I live in an apartment, but they do have wheelchair accessible apartments here. Is it a pipe dream to hope that he could get well enough to have the independence to come hom after rehab? I just feel like he has never been given a chance. I know if he were to come home in his current state, it would require me staying with him. He has a trach and is on room air(28% oxygen), an ostomy bag, a peg tube, and a cathader.
    That is another thing I am not sure of. If I were to give up my job to stay home and take care of him, what would insurance cover? I can never get a direct answer on if I would be paid for being a caregiver, etc. Or if we would be allowed in home nurses for small time periods. I am also looking into grants for motorized wheelchairs and vans.

  9. #9
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    HOw do I get to private caregivers forum?

  10. #10
    Senior Member
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    Welcome to CareCure. I am so very sorry you are having to deal with this but alot of us here understand your frustration and desire to want to help your husband get better. I take care of my husband who has MS and I too have dealt with the Drs. saying there was nothing else we could do, he has progressive MS and will eventually die from complications from it, however it has been 4 1/2 years now and he is standing on his own for 3 minutes at a time and 10 minutes in a sling. Don't ever give up and keep trying. Alot of people on here talk about waivers that their states offer to cover home care. We don't get Medicaid so I'm not to sure of them. You may want to check into that. Also if you go to the top of this page you will see the caregiving forum, click on that and then on the bottom of the page you will see the moderators, Kate and Obieone, send one of them a private message asking for admittance into the private caregivers forum.

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