Help Finding Resources

I am having a problem finding any resources on my situation.  I had just turned 48, my husband 46, when he was critically injured at work resulting in a spinal cord injury, resulting in Brown Sequard Syndrome.  We just received SSDI in June08 after 2 denials and 3 appeals.  He will never be able to work again.  Now, even though the work comp carrier has acknowledged this by agreeing to a hearing only that will reflect their consent that he is 100% disabled, meaning he will go from Temporary Total to Permanent Total.

I have to have help in the home with him.  It can be 2-3 days a week, 4 hrs a day, but as I work 40+ hrs a week, about an hour away, it provides relief that his needs are being met.  He cannot use his left arm and hand. Weakness below injury site, he can fall, never learned how to cook, and should physically never do physical work like housework.  He lives in pain, to do any of the above would add additional pain.

He's had caregiving services, part time for the last yr.  Work comp is wanting to do an ADL assessment and I have no idea what the assessment is going to be like and the outcome.  I know what ADL's are, since I work for a company specializing in senior care.

Any advice, discussion, words of wisdom would be appreciated.  The only thing out there for caregivers is really for people my age taking care of their parents or in-laws..nothing for younger couples.  Thanks again.

Trish in Alabama, 48

Dear Trish,

Considering all you have been through, it's obvious you have done a Herculean job already.  AARP has a legal department that may be able to address some of the issues you mention.  Also, you did not state if your husband is a veteran. If he is, the Veteran's Administration has a legal component and it can be very helpful directing your questions and needs to the appropriate section within their administration.   The Department of Aging or Area on Aging in your state should also be able to answer your questions and meet your needs on a local level.  And be sure to visit the National Spinal Cord Injury Association at www.spinalcord.org for more helpful information, especially with regards to support groups in your area.  Finally, in this process, please remember to take care of yourself and your needs. Caregivers must find support for themselves, or else the entire situation falls apart.

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