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Thread: For Love of my Brother

  1. #21

    For Love of My Brother

    Quote Originally Posted by spike
    hi mary
    has he gone through health and human services or the league of human dignity. my wife is slated for 55 hours a week for home health through the league and could possible get more if needed. there are agencys out there that will help. best of luck.
    Hi Spike,

    I hadn't heard of this one yet, but I am reading, talking learning all that I can. Best of luck to you too. Mary

  2. #22

    For Love of My Brother

    Quote Originally Posted by dan_nc
    Mary, I think what you are doing for your brother is truly incredible.

    I'm sorry I can't give any suggestions other than what everybody else has mentioned--discharging planning is really important. A lot of options really depend on your brother's medical insurance, finances and access to government programs vary tremendously from state to state. How old is your brother? I will be praying for you, your brother and your family!

    Discharging planning is very scary! He has good insurance, but the level of his injuries is just so serious. My brother is 43 years young.. Thank you for your prayers. Mary

  3. #23
    His brain injuries certainly make his care more complex, but still not something that many people do manage at home. Push his insurance company. It will be cheaper for them to provide appropriate home care than SNF care, esp. as he is much more likely to require repeated hospitalizations for complications if he is in a SNF.

    I would recommend that you get and read this free book. It will help you learn better how to fight the insurance company.

    Don't give up. Keep appealing, and appeal the appeals until you get some response. They are not a "good" insurance company if they insist on institutionalization as the only option.


  4. #24
    I had a reply typed out but most of it somehow disappeared on me after I tried to post it. Sigh. I will re-write it later.
    Last edited by orangejello; 04-01-2007 at 07:16 PM.

  5. #25
    Last edited by orangejello; 04-07-2007 at 09:41 PM.

  6. #26
    Quote Originally Posted by orangejello
    I don’t have much practical advice to add to this thread; but as a C2 ventilator dependent quad who was able to come home after my family was initially told a nursing home was the only viable option given my care needs, I think I understand some of what you and your family are going through.

    My situation is very different in that as a Canadian I was able to secure government and private insurance funding for my own accessible apartment and 24/7 paid care giving staff without too much hassle. However, getting the funding set up and planning for my discharge was a long, drawn out, and frustrating process that took a big toll on my family. But we did manage to make it through my hospitalization, rehab, and then coming home.

    Now that I am home, there is a whole different set of problems to cope with. But we are dealing with them, sometimes successfully and sometimes not. Unfortunately it is a learn as you go process. While I have care giving funding in place, it has often been difficult to hire reliable help. So a great burden of my care is still falling on my family, at least at this point in time. I have been home for about 3.5 months now. We tried to deal with this by training as many family members as possible on my vent and other care. Fortunately I have a large extended family so things are not falling solely on my parents’ shoulders. I know this is a luxury many families do not have. But I think that finding as many sources of care givers is the key to a vent dependent quad staying out of an institution.

    I am in no position to tell you that your brother coming home is possible. But having traveled down this road with my own family not so long ago myself, I at least wanted to offer you some hope. As I read your message it made me think about my first message here and how lost and overwhelmed my family and I were at the time. We still are. But there is help and support out there, including this website.
    Hi, I wanted to thank you so much for writing a little about your story. I had actually read every post I could from you when I first got here. I knew you where in Canada, and things are different there. At this point we are still trying to figure out how to make this work. The politics of it all seems crazy to me. We have to wait till closer to discharge from some answers and yet we can't afford to wait to long. At this point I am now trying to figure out who, where do I call to get help with the home modification I would need to bring him here, and then can't move forward with making those until we know how many hours of help will I get. Thank you again for writing me me...I think your story helped me believe we can find a way.

  7. #27

    I, too, have a brother who sustained a SCI when he was age 45. My whole family was in a state of shock and nobody knew (or tried) to get ANY balls rolling for my brother's benefit. I took the whole burden of responsibility for his care on my shoulders (because his daughter wouldn't, he had no wife). I have read your posts and feel for you. My brother, luckily, came off the vent and had his feeding tube removed after 3 months post SCI. He still swallows very carefully so he won't aspirate. They, too, were in a hurry to get him out of the hospitals and into some kind of permanent situation - because of insurance problems covering his stays. It's all about money most times with these hospitals and clinics. I didn't know what else to do with him and placed him in a nursing facility in my own home town so I could see about him. I promised him every day that I would get him out as soon as I could and meant it. He and I have seen some very disheartening things in that nursing home. I've read on this web site that a nursing home should be the last resort, if any other is available.
    I waited almost 3 years and finally the other day I got a letter in the mail from our state's "waiver program" for sitters in the home. The list is so long that you have to wait your turn for the state to be able to pay for them. His application is filled out now and I'm waiting on their answer now 2 weeks.
    I write all of this to let you know that sometimes the wait will seem so long, but when the answer finally does come and you can see some light in an otherwise dark situation, it really helps.

    The nursing home my brother is in also has one of our state's only "vent units" inside it. My brother went straight to that vent unit in his wheelchair and located several friends. He talks to them and gets assistance for them when they can't for themselves. He became so vigilant or their care that the administration of the nursing home banned him from that wing of the home entirely. Their reason, he was impeding the care of others when he asked for nursing assistance one morning for his friend who could only nod when he asked him did he want a nurse because he was struggling with his vent - needing it suctioned out. They didn't want to come at all.

    I only hope that if you have to put him in a nursing facility, that you can be close to check on him and can walk in "unexpectedly" to see that he's properly cared for. Sometimes, as I did, you HAVE to resort to these type facilities for care when it's needed as badly as we have to have it.

    I believe I did my brother a great disservice when I did not send him to a good SCI rehab facility after he'd gotten well enough to go. The better ones were not in our state and he would have had to be away from his family, which he did NOT want to do at that time, he was scared. I let him talk me out of it, and I should have sent him on, for his own good. He never learned skills needed to live independently and had become very dependent now.

    I'm hoping that when I bring him back to his own familiar surroundings that the 15 hours a day the state will provide for sitters in the home will help him. I will, of course, pay out of my pocket for the other 9 hours per day until I see that he can manage alone some.

    I can relate to you about having your own family, as mine has suffered because of my brother's SCI. You must be a strong person and I will pray for God to give you strength that you will need in coming days and years.


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