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  • #16
    Yes, the program/agency covers for all my supplies and everything else. That question was for zillazangel. I know I would not be able to afford my supplies if I have to pay out of pocket.

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    • #17
      What is your insurance? Medicaid? Medicare? Worker's Comp? Private Insurance? Who pays for your PCA hours?

      (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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      • #18
        Originally posted by hyisbm View Post
        wow, that is unbelievable. Can I ask why? Or how this is possible? Who takes care of supplies?

        I will keep pushing for an answer to the hours. There has to be a formula/calculation that they use. Although, they did say that each member is different so times may be different.
        Chad has private insurance through his job, on which he is actually on long term disability at the moment. But he still has health insurance through it, and its blue cross blue shield. Everything I do is considered "custodial care" .... which is ironic, because if we had an agency, only a registered RN could do things I do like bowel care, changing his suprapub, etc. I have joked often with others in our shoes that it is likely that brain surgery is considered custodial care in their opinion.

        Back when Chad and I were not married, he qualified for state aid through something or other, I forgot what it was. But they would come out once a year and evaluate his needs. The max was 40 hours per week and that's what he always got. Then being the fools we were, we got married and my income blew all possibilities of assistance out of the water. I have a relatively high income, but care is extremely expensive and fraught with difficulty when you have a small child in the home, etc etc. (we have had some hum-dingers apply for the job - a child molester who'd been in jail for it ... no joke, I was I was kidding!!).

        He gets all of his supplies, medications, and medical care through his health insurance, so that's covered, other than out of pocket expenses (which are substantial even with good insurance).

        Good luck .... we completely know what you are going through.
        Wife of Chad (C4/5 since 1988), mom of a great teenager

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        • #19
          zillazangel you are an angel. Many couples I know can't afford the downside of getting officially married. Those that do have tremendous pressure put on their relationships by being forced to be sole caregivers. And the system could care less.

          My wife and I were the only couple in our social circle to be 'officially’ married. All the other couples we knew lived together but had their mail dropped elsewhere. That was the situation in Ontario.

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          • #20
            Thanks vanquad, it is a rough gig, but I love Chad, so I do it. I'm not a saint, trust me, but I do what has to be done. In retrospect, we shouldn't have gotten legally married, it really screwed up our finances. But on the other hand, there is just something about being legally married that makes us both really secure and happy because it ensures that I am have legal rights in all sorts of regards.

            It's funny when people tell me I shouldn't do his care, or I shouldn't have a full time job, or whatever. I want to say back "what part of my life is optional?!" My job pays the bills, I have an 8 year old son who needs care, attention, love and a good mom, a disabled husband who can't do anything for himself at all (no movement/sensation below shoulders), and the house doesn't clean itself!! Even when I am sick or have a broken foot (I broke my foot last January, no weight for 12 weeks on it, seriously) - I have to make do somehow. And we do.

            I can only do this because of Chad though. He is so good about everything and never ever makes demands on me that are unfair. Demands, yes - you can't make your bowels behave on cue, but things within his control, he does and makes me life easy where he can. What little that is, which means alot.
            Wife of Chad (C4/5 since 1988), mom of a great teenager

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