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    SO IS POVERTY REQUIRED?

    My husband can't take care of me because he suffers from back pain, it does change me when I need it but he still gets sick sometimes.

    I'm getting in home OT and PT and I think I'll do well with that but now I have a rotator cuff microtear so transferring to a wheelchair is pretty much out of the picture until that heals and I have no idea how long that will take. Does anyone know? I can't use my left arm or hand to transfer at all. So who knows when I'll get in a wheelchair again. Besides, I always needed his help to transfer anyways.

    I have a wonderful CNA health aide coming twice a week to give me a bed bath but at $21 an hour, I can no longer afford this after this week. I have requested a financial assistance application from and NMSS but I don't know if I can get assistance with this expense. I really need somebody to stay with me all the time, I really need to leave my home and moving to assisted living. That expense is simply completely out of the question.

    If I stay here in my beloved home with my beloved husband and furbabies, I will never see anybody again or even look outside so how can I not lose my mind? This is not living.

    I wish I were a zombie so I could at least walk a little bit. Meanwhile my aging parents are nearing the end of their lives, my mother has stage four cancer and my father refuses to acknowledge his health problems and he's always been that way, he could barely walk at all and he's starting to fall a lot. They are estranged from my only sibling, so I am the one who tries to coordinate their care and be their advocate.

    Does anyone here have an aide that is with them 24/7? And how on earth do you pay for it?

    I am only 51. I am not eligible for SSDI or Medicaid. And I guess we're going to have to lose everything before I would qualify for any kind of help and my quality-of-life is already so low that if it goes any lower I won't survive.

    I can see those golden stairs sometimes when I'm about to go to sleep *** who is up there waiting, with the halo. I pray I won't wake up. I have a very busy week this week with doctors appointments, our urologist to address my UTIs and a breast ultrasound followed immediately by a consultation with a breast doctor or whatever they call that. If they find anything, I will decline treatment because what on earth where I would I want to stay in this situation?

    Unless I can find a way to receive the help I need and stay in my home, I have nothing to live for and everyone around me is suffering because of my health problems. I am a very strong person but this is a mountain i cannot climb. And I constantly wonder, what did I ever do that was so awful that I deserve this?

    Sorry to be such a bummer, just ignore me if it's too much. Have a wonderful Monday.
    ---------------
    "It's never crowded along the extra mile." --Dr. Wayne Dyer

    #2
    I am no expert...

    RockysMom, I am so very sorry for your situation right now. My heart goes out to you.

    I am not an expert in anything, but it certainly seems to me that given your health situation - you should be eligible for SSDI. Have you tried applying? I am sure someone here with more experience can help you....

    Prayers for you.
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

    Comment


      #3
      Poverty isn't the answer. There is no 24/7 in home care in Medicaid anymore. Everyone gets shuffled off to nursing homes. Assisted living is a ripoff. It's good you aren't being sucked into that idea.

      The only thing I would look into is help in your community. A good church where everyone cares for each other seems to be the only option, but I see your predicament. Just transferring to your wheelchair is something you need help with.

      I hope your OT people have given you the exercises to heal a rotator cuff. That's something you can do in bed. I compare your situation to the prisoner who does push ups every day in his cell so he will be strong enough to escape.

      You have been so brave. I've followed your posts. It's really heartbreaking. Our country needs to provide for all the people in your situation, whether it is from a disability or age.

      Comment


        #4
        No I'm not... :*(

        Originally posted by Boymom123 View Post
        ...it certainly seems to me that given your health situation - you should be eligible for SSDI.
        Prayers for you.
        Thanks for your suggestion but I did not work 5 out of the last 10 years and that's the first requirement. I have worked the last 8 years as a volunteer of a nonprofit all volunteer charity which I founded and am president of but that doesn't count for SSDI as far as I understand because I didn't earn any money, however I raised about $25-30k a year for the charity.

        I'm half French Canadian so maybe I should move there because I'm considered a Canadian citizen but I'm pretty sure it's the same there now due to the hidden merger between our two nations. We'll all have the same currency eventually and more land to develop and destroy.
        ---------------
        "It's never crowded along the extra mile." --Dr. Wayne Dyer

        Comment


          #5
          Is this how it is for MSers? Unbelievable...and reprehensible!

          Originally posted by palmtree View Post
          Poverty isn't the answer. There is no 24/7 in home care in Medicaid anymore. Everyone gets shuffled off to nursing homes. Assisted living is a ripoff. It's good you aren't being sucked into that idea.

          The only thing I would look into is help in your community. A good church where everyone cares for each other seems to be the only option, but I see your predicament. Just transferring to your wheelchair is something you need help with.

          I hope your OT people have given you the exercises to heal a rotator cuff. That's something you can do in bed. I compare your situation to the prisoner who does push ups every day in his cell so he will be strong enough to escape.

          You have been so brave. I've followed your posts. It's really heartbreaking. Our country needs to provide for all the people in your situation, whether it is from a disability or age.
          Thanks palmtree for your kind thoughts. Now today I get notice of our health insurance premium increases and they will increase 47% on Jan. 1! Then it will be only $60 less than our mortgage!!! A total of $1235/month!!!!!!!!! Um...what is "Affordable" about this??? We didn't have health insurance in 2011-2013 because my husband lost his job. He trained for a new job in transportation but he cannot drive 16 hours a day and he would have died - of course maybe that's what the gubmint has in mind for those displaced workers who long ago fell under the unemployment rate radar (which is such horse hockey anyway). This health insurance premium rate hike doesn't seem legal. Not only that, our out of pocket maximum will increase $1000 making total plus deductible $5750. Or combined $11,500. All the copays and coinsurance are going up quite a bit too! "Affordable"? No way...

          So I'm going to try applying for Medicaid I guess. Technically, we don't have any income. We are only surviving because an elderly well to do friend gives us money every month to live on - and as a gift, it's not taxable. We still have unpaid hospital bills from July and September.

          I was in the hospital 4 days in Septmber and then was sent to rehab so I could heal up from my gallbladder surgery. After a week, I was all healed and they weren't going to discharge me. They were going to keep me there for months! Then my insurance would go up by half and I wouldn't be able to afford it so they would seize all my assets! That's what they did with my roommate I had last time I was there from 10/14-1/15! Not only that but I was kicked out of rehab in January because my therapists said I had made minimal to no progress even though I'd been walking again for the first time in 16 months! And the insurance company had said I only had 11 days left in SNF for all of 2015 when it should have been reset on 1/1/15!!! But insurance company said my contract started in 11/14 even though I didn't start paying premiums until 1/1/14!

          So they seemed to be in cahoots, the insurance company and the therapists, they sent me home before I was ready (couldn't use a bedside commode yet so my husband got very sick taking care of me and ended up in the hospital at end of July and I had to go too since I had no one to take care of me!) HOWEVER in early September, after my emergency gallbladder removal, when the hospital social worker was handling my going into rehab, she said 'yes you have only 11 days left this year in an SNF.' But the next day she came back after talking to the SAME insurance case manager from January who'd said I only had 11 days left and magically, I now had 83 days!!!

          So that probably wasn't even true because everyone in the hospital and at rehab all told me lies that their last day was the next day, probably legal CYA. But they weren't going to let me out of rehab! I was a prisoner even though I'd been getting home health care before the surgery! So I knew they planned on never letting me leave and seizing my assets because they all thought I was rich just because I always had the latest Apple phone, watch, tablet, headphones (um because I'm bedridden and my entire life is digital! It's all I have to keep me sane!). I demanded to be discharged and NOT "against medical advice" which is how they make sure they get paid. I said if they didn't discharge me and not with that "AMA" label then I'd be calling my lawyer the next business morning. I was discharged the next morning and saw a lot of the staff walking by looking red as a beet. Last time I had been there, they fired a lot of the aides who had helped me. I'm sure they fired a bunch after I left this time, I found out they fire most of the staff on a regular basis.

          Is this America? Where healthcare providers work in cahoots with the insurance company to drive you into poverty and then hold you prisoner and just barely alive so they can milk the gubmint as long as possible?

          What on Earth do I do now? I feel like sending this text content to a big newspaper to expose the seamy corruption that's out there. I'm just stunned.
          ---------------
          "It's never crowded along the extra mile." --Dr. Wayne Dyer

          Comment


            #6
            I am so sorry you are going through this. If I remember right, you don't have enough work credits for SSDI and because your husband works, can't qualify for SSI? Our system really does stink with regards to healthcare and assistance. All the people who abuse the system make the headlines, but all the people who are in distress rarely do.

            Can you check with your local representative, township, or county offices to see if they can help you find a resource to explore potential.assistance?

            I also hear of people who set up a gofundme account to help. I am sure that would be a difficult and emotional thing to do as no one wants to publicize their struggles.

            Just trying to think outside the box, but I wonder how home health agencies train new staff? Can you volunteer to be part of their training? Or like habitat for humanity, are there any organizations that have volunteerhome health services? Ask the people who come in if they know of anything.

            I wish I had more answers for you. I can only imagine how you get by day to day.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Not sure if they cns

              help but have you contacted the National MS Society and the Multiple Sclerosis Association of America?
              So sorry you're going through this

              Comment


                #8
                You being in this position is just awful. I hope these ideas can help:

                When the time comes for you to enter a nursing facility for the long term and they start to ask about your home, definitely hire a good, reputable lawyer to negotiate w/ the facility to allow your husband to stay in your home for the rest of his life or until he moves out to live elsewhere. Nursing facilities are often open to this type of contract because the positive for them is that they'll receive the appreciation in market value of the home when the facility ultimately sells it.

                In the meantime, if you have any equity in your home, try to find out if using the equity to hire extra help is an allowable expense if Medicaid has some type of five-year "look back" rule. You might be able to refinance or do a reverse mortgage to use the equity to hire extra help that would allow you to extend the length of time you can stay in your home.

                Best wishes.

                Comment


                  #9
                  This is meant with every ounce of kindness in my heart.

                  Have your husband and you looked into what would happen if you divorce? Your benefits would have to change drastically.

                  Your situation is bad...a lawyer needs to be involved.
                  Katie
                  "Yep, I have MS, and it does have Me!"
                  "My MS is a Journey for One."
                  Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                  Comment


                    #10
                    I love the idea of a training program

                    for CNA's that would give them credit hours toward their degree for volunteer. I work with a lot of CNA and home health providers...maybe contact a local nursing school to see if they have something like that as part of their program. I know I used to get a lot of volunteers for hospice patients (respite care)from local colleges.

                    Or, if your home would provide space for a student you could do a room and board exchange for assistance.

                    I am sorry for your challenges, I wish that instead of paying for those that need care to be in a nursing home they would just allot those funds to home care. Maybe someday....

                    You are in my prayers. Sadly this is an all to common occurrence in healthcare today.

                    Comment


                      #11
                      Thanks 2much

                      Originally posted by its2much View Post
                      help but have you contacted the National MS Society and the Multiple Sclerosis Association of America?
                      So sorry you're going through this
                      Yes I have gotten an email back from them and will be hot on the trail to what they offer. Thanks so much! I'd forgotten about the MSA!
                      ---------------
                      "It's never crowded along the extra mile." --Dr. Wayne Dyer

                      Comment


                        #12
                        Forgot to answer this...

                        Originally posted by pennstater View Post
                        If I remember right, you don't have enough work credits for SSDI and because your husband works, can't qualify for SSI? ---

                        -- Can you check with your local representative, township, or county offices to see if they can help you find a resource to explore potential.assistance?

                        -- I wonder how home health agencies train new staff? Can you volunteer to be part of their training? Or like habitat for humanity, are there any organizations that have volunteerhome health services?
                        My husband has been out of work for 4 years. In 2009, he got laid off twice, in 2010, he got laid off, company shut down (as did most of the industry). He trained for a new career but wasn't young enough to handle it. I attempted to replace the lost income but kept getting sicker and sicker from so much sedentary work until I ended up like this. We are blessed with a guardian angel friend of the family who has been gifting us enough to live comfortably on since 2011. However it is a limited resource and cannot be increased to absorb a 47% increase in our insurance premiums. A social worker told me we should be able to get Medicaid because we have no income. Our gift income is nontaxable, and it could cease any day but I don't think it will.

                        So should we be able to get Medicaid or SSI? What is SSI? I need the acronym's full text to look it up. We have never attended church except for funerals however my husband is very keen on joining a local church while of course, I cannot go but I would go if I could get in a wheelchair and had a wheelchair accessible van. So maybe that would help until they come in and see my various religious photo props (I'm living in my former studio).

                        Thank you for your concern and ideas because now I'm starting to formulate a plan. 😉
                        ---------------
                        "It's never crowded along the extra mile." --Dr. Wayne Dyer

                        Comment


                          #13
                          just to let you know, I put a copy of your question in theSocial Securitydisability questions answered by attorney Rich Feingold
                          hunterd/HuntOP/Dave
                          volunteer
                          MS World
                          hunterd@msworld.org
                          PPMS DX 2001

                          "ADAPT AND OVERCOME" - MY COUSIN

                          Comment


                            #14
                            Highly doubt it

                            Originally posted by KatieAgain View Post
                            This is meant with every ounce of kindness in my heart.

                            Have your husband and you looked into what would happen if you divorce? Your benefits would have to change drastically.

                            Your situation is bad...a lawyer needs to be involved.
                            Oh that's not a touchy subject to me. We've been married 20 years now and he could never survive without me. I don't think he could handle an details of running a household on his own. I've always done every little detail of that. He's like a kid who is totally reliant on household authority figures yet he's rebellious as well. It would be me kicking him out if anything and yes I have an excellent lawyer 😉 Ask Rocky 😜
                            ---------------
                            "It's never crowded along the extra mile." --Dr. Wayne Dyer

                            Comment


                              #15
                              OP your avatar is beautiful! I'm so sorry you are struggling and wish you the best.

                              Perhaps this thread can also serve as a much needed wake up call for those out there still professing "I have MS but it doesn't have me". I would add "yet" and also encourage everyone to get their financial affairs in order. While I am still able I will continue working like crazy and saving as much of my income as I possibly can to afford more options when the time comes that I am unable to work.
                              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                              Anonymous

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