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    #16
    You need to advocate for yourself!! You have earned a better quality of life and you deserve it!! If your family feels that you are a burden because you are unable to do some of the things that you did before then that is THEIR problem! You need to take care of yourself or find a person who is willing to advocate on your behalf with only YOUR best interests in mind. Please do what you need to do!!!

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      #17
      Originally posted by Acarson
      Yes Scott-apparently the answer is yes.
      according to whom? her? you?

      If you are Rich enough to pay for your own care all is good. If you are poor enough-your entire net worth is less than $3000-Medicaid will step in and pay for everything you need. Anything in between too bad, so sad.
      I empathize, and yes the system sucks, but that's not the point of what I was asking.

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        #18
        screw moving to a nursing home, you have something (assests) vs some of us who had nothing

        time to re arrange your financial life and your life priorities. you still got your brain function, right?

        SCI, the school of hard knocks. time to graduate and WIN at life.

        forget the nursing home. if you cant get help paid for, or you have too much income for medicaid, hire privately.

        thats what the rest of us do. its deductible.

        somehow we make it. so can you.

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          #19
          i looked but couldn't find..whats ure injury level andre?

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            #20
            Andre, as you know, I can relate to your situation (as a whole). I am caregiver wife, and while we have a PCA, she is rapidly becoming unreliable and has only worked a few hours a week for the last few weeks, leaving virtually all of chad's care to me. For 14 months before she came along, I took care of Chad 24/7, alone, but also with a 5 year old child, wa full time job (I work from home), a house to clean, laundry to do, food to cook, groceries to buy, cars to service, lawns to mow, etc etc etc etc ... ad infinitum. Yes, the burnout factor is huge.

            With that being said, what your wife is doing and how she is acting is inexcusable. I'm sorry, but I've been there done taht and do it, and I would never, ever, ever do what she is doing. I do burn out, but I do not take it out on Chad. I would go down in flames dead before I yelled at him, didn't feed him, refused to get water, etc. Trust me, I understand stress associated with this, so I'm not speaking from an uneducated position.

            But you are right, the wealthy are fine, the destitute are helped (sorta) but us in betweeners have it hard. Although, we are very rapidly heading into the destitute land, because we used to have quite alot of money but SCI (and other things, not that alone) have stripped us of nearly all of our resources. That too makes it really hard becuase then we can't afford help even when its available.

            So, back to a nursing home. Is it the right option? Maybe becuase your wife is so abusive. There can't be much worse than being yelled at, hit, and starved. But it is also the case that if she is able to get some help (psychological, physical with your care, anything), things may improve. If she has assets, sell them for pete's sake!!! The rainy day is here. If she is refusing to do so, that's another matter.

            I want to say something in your other thread about suicide too, but I'l lhave to write it out later, as I have take care of chad just now. Irony noted. (( hug ))

            Ami

            p.s. one last thought - why have you not had any more functional return? Chad is a c4/5 but from 19 years ago. There should most certainly be ways that you can regain function???? With even a little bit more, you can be so much more indepedent. Also, listen to Betsy (lizbv), she has really and truly been there done that. She may be worth talking to on the phone or by email, she is super awesome and tough as nails. ANd you can be too.
            Wife of Chad (C4/5 since 1988), mom of a great teenager

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              #21
              Originally posted by Lizbv
              screw moving to a nursing home, you have something (assests) vs some of us who had nothing

              time to re arrange your financial life and your life priorities. you still got your brain function, right?

              SCI, the school of hard knocks. time to graduate and WIN at life.

              forget the nursing home. if you cant get help paid for, or you have too much income for medicaid, hire privately.

              thats what the rest of us do. its deductible.

              somehow we make it. so can you.
              Hey, Betsy. Was hoping you'd check into this thread.

              Comment


                #22
                Originally posted by Acarson
                Yes Scott-apparently the answer is yes. If you are Rich enough to pay for your own care all is good. If you are poor enough-your entire net worth is less than $3000-Medicaid will step in and pay for everything you need. Anything in between too bad, so sad.
                Acarson
                I would consider looking into a Medicaid Waiver Program. There are some states that allow married couples to have assets that exceeds the states maximum amount and still get Government services ie, in home care and Medicaid.

                I'm an unmarried quad, who lives with a married quad. His wife makes 65,000.00a year. Through some research, they were able to get him 239 hrs of in-home support services because of ( i'm probably not using the right term) spousal impoverishment. They had to put all assets in the wife's name. Unfortunately, I don't have any details cause they're not here I'll try to find out more later. The program even pays for his Kaiser Premiums through his wifes policy.
                Last edited by Bryon K; 1 May 2007, 9:33 PM.

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                  #23
                  O I don't mean to be mean about this, I just want you to know that now you must dwelve into tough life descisions you often believe you can't face but when in fact, you can. And you can be ok.

                  I was reading Christopher Reeves book Nothing is Impossible and I like his qoute at the begining of the book:

                  Whether you succeed or whether you encounter adversity; you always have to believe in your worth as a person. Thats what counts.

                  Comment


                    #24
                    I’m like Ami (been there, done that) and totally agree with her. There is no excuse for your wife’s behavior, but your wife is at the end of her rope and she needs some help with your care. Was she abusive prior to your paralysis? I think if she got some help, you would find a whole new home life open up for you.

                    I think we all relate to the middle income SCI. There are not many of us that are rich and can really “afford” to hire the care we need, but we do it anyway. That is what I meant about exploring everything and finding ways to make it work with what you have. That is precisely what most of us here do.

                    If she has all the assets and you two get divorced then won’t you be eligible for Medicaid since you will then have no assets? You have been married for 17 years. Aren’t her assets really both of your assets? Use “your” assets. What about Medicare? Are you receiving SSDI? It is a crying shame for a guy with your talents, education, and ability to end up in a nursing home.

                    There are a few of us married couples, coping with high level quadriplegia, children and everything that comes with it here at CareCure. No this isn’t what I signed up for when I said I DO. I never applied for the job of caregiver to a high level quad. We were saving for retirement, the kids’ college education, but not SCI. But drastic injuries call for a drastic rethinking of your plans. Kids can get student loans, wives can go back to work, quads can find a way to earn some sort of living. I hope that you and your wife are able to re-think your life together as husband and wife. When I said for better or worse I meant it. Unfortunately we got the “for worse”, “for poorer” and “in sickness.”

                    Comment


                      #25
                      Acarson- hey the wife of the quad i mentioned in my first post just got home. She informed me it may help to register and become member on http://health.groups.yahoo.com/group/SCIC there are members that are familiar with Medicaid Waivers in most states. Linda the wife has been able to help others in other states than our own as well.

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                        #26
                        Andre,

                        The group above that Bryon linked you to is a good one...please check it out!

                        Take care, God bless!

                        Teena

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                          #27
                          eldercare attorney .........

                          it sounds like you may need the services of a good eldercare attorney. this type of attorney also relates eldercare law to the disabled. they will be able to restructure you and your wife's assets and financial affairs so that you will have the services you need at home using medicaid, community service agencies, etc. i know, because we just went through the process in case i ever need more in home help, medical transportation, etc.

                          doing this will also protect your spouses assets from ever being attached by the state to recover the medical money it paid on your behalf. one of the links below will help you find an eldercare attorney in your state plus there is additional info in these links as well.

                          http://www.elderlaw-lacey.com/

                          http://www.elderlaw-lacey.com/articles.htm

                          http://www.elderlawanswers.com/about_ela/aboutus.asp

                          http://www.elderlawanswers.com/board...asp?category=5

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                            #28
                            i am a little confused. you are an attorney, right?? why are you posting here and not networking with the appropriate attorneys? we are here for support and info, but i'd think you have much more immediate and effective allies in your existing network. don't be afraid to ask.

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                              #29
                              Originally posted by PwMS
                              doing this will also protect your spouses assets from ever being attached by the state to recover the medical money it paid on your behalf.
                              Why should one's spouse's assets be protected in this way? Why aren't the wife's assets being used to hire attendants and otherwise case for her husband? Is there a divorce in progress? If so, then I would think alimony for the husband would be in order and the new situation may allow him to get assistance from the state while he is working towards getting back to his day job. He is getting back to work at some point, isn't he? If he's not planning on getting a divorce, why isn't his wife spending her/his/their money on caring for her spouse? I don't fault any spouse for not wanting or not being able to be a fulltime caregiver (I want to be a wife, not a nurse and want my husband to look at me as his friend and lover, not as a patient.), but if the wife isn't going to care for her husband, she damn well needs to find someone to. If she would rather send him into a nursing home than hire home care, why stay married to her?

                              C.

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                                #30
                                check with the League of Human Dignity that's who we went through to get my wife's caregivers and medicad pays for it hopefully they can help best of luck

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