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    #61
    Yes still in the hospital, but I should be out of here early next week.

    I need advice/opinions/help please!

    The social worker and I are talking to two different places that will accept me for sure and she's calling a different place on Monday.

    One of the for sure places is a nursing home that after 31 days I can apply for nursing home medicaid, and will most likely get it.

    The other for sure place used to be labeled a group home and is now licensed for everything I need. (Which is alot) But, it'll take all of my disability check and make a major dip in my savings. There are people of all ages there and the woman we've been in touch with made it sound like a relaxed almost playful atmosphere, with strong (which I really need) skilled staff. They will also let my daughter come stay the night in my room sometimes.

    Both those places are even farther away from my family than I am now.

    The place she's calling back on Monday is a nursing home that is literally 2 blocks from my house. That one is only a possibility at this time.

    If the nursing home by my family will accept me, should I go there to be closer to my family? Or should I go to the place that will let my daughter come spend the night?

    Ignoring the nursing home I don't know about yet, should I go to the nursing home that has a possibility of being paid with medicaid or the place that I have to pay for?

    I know it's my decision, but I would really appreciate some advice/opinions/input of any kind. Thank you. Hope you all are well.
    Diagnosed December 20, 2011
    Avonex: February 10, 2012 - March 16, 2013
    Tysabri: June 28, 2013 - May 23, 2014
    Betaseron: August 15, 2014 - March 10, 2015
    Aubagio: June 18, 2015 - current

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      #62
      Hmm.. yes it is a difficult decision. I am kinda in favor of the nursing home near your home. Not sure about who all lives in the group home, but probably the residents are more permanent.

      Would you be in the reheb part of the nursing home then? Because your insurance would pay for all of it, right?

      Do they have a prognosis about how much longer you may need to be in a facility?? And is it possible to visit the group home first? Are you able to transfer yet?

      Good luck, more prayers are on the way

      Warmly, Jan
      I believe in miracles~!
      2004 Benign MS 2008 NOT MS
      Finally DX: RR MS 02.24.10

      Comment


        #63
        I only have county insurance that only works in this hospital and with the doctors and clinics associated with it.

        I can't transfer or use my legs much at all.

        No one has been able to tell me how long I'll need to be in a facility. It all depends on if I can gain some more strength and recover. I'm trying, but this past week it seems like I've taken a step back and gotten weaker. And my leg spasms are more frequent and more painful. They've even woken me up at night.
        Diagnosed December 20, 2011
        Avonex: February 10, 2012 - March 16, 2013
        Tysabri: June 28, 2013 - May 23, 2014
        Betaseron: August 15, 2014 - March 10, 2015
        Aubagio: June 18, 2015 - current

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          #64
          Hi Cupcakes! It's been some time since we heard from you! Hope you are doing better and feeling like you are gaining some strength and wellness

          Did you decide - group home or nursing home? Please let us hear back from you...lots of us haven't forgotten you and still sending prayers for the home that is best for you and your family and for better days ahead~~

          Keep well - we are still here for you!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #65
            Sorry it's been so long

            Yes I'm alive and finally have internet access again.

            I was in the hospital for 6 weeks and a nursing home (that was 30 - 45 minutes from my house depending on traffic) for 5 and a half months. I've been home for 2 weeks. I'm home because the nursing home kicked me out due to lack of payment. I can't afford the $4,000 a month (plus the cost of meds) and lovely Medicaid repeatedly denied me because I "do not need 24 hour care". Even though I am a hoyer lift, cannot stand or transfer (which means no use of the bathroom, think about what that means) I still got sent home for my unhealthy parents to care for me. I tried getting in different nursing homes and assisted living facilities, but can't afford anything on my ssdi. Thankfully I had a decent savings account and was able to buy an overhead patient lift for my bedroom so I can get back and forth between the wheelchair and my bed with help so I'm not completely stuck in the bed.

            I hope everyone is doing well.
            Diagnosed December 20, 2011
            Avonex: February 10, 2012 - March 16, 2013
            Tysabri: June 28, 2013 - May 23, 2014
            Betaseron: August 15, 2014 - March 10, 2015
            Aubagio: June 18, 2015 - current

            Comment


              #66
              Cupcakes!! So glad you're back I haven't forgotten you and your ordeal. I sorry your hospital and nursing home stay was so long, but it sounds like it was needed. Too bad about the costs , but you used your money wisely to buy a lift. Good plan!

              I hope everything works well for you and your parents having you home again! And your daughter!! She and you are now getting quality time for hugs - yes?

              Take care now and welcome back
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #67
                Originally posted by LostCupcakes View Post
                Yes I'm alive and finally have internet access again.

                I was in the hospital for 6 weeks and a nursing home (that was 30 - 45 minutes from my house depending on traffic) for 5 and a half months.
                EDIT: I was only in the nursing home for 3 and a half months. Wow I should proofread better before I post. Sorry about that! So I was away from home for 5 months total. Ugh it felt like forever. Of course I came home three days before my daughter started kindergarten. She loves school (so far) and she spends the evenings glued to my side no matter if I'm in bed or the wc. She still doesn't have a good concept of time, but she does worry that I'm going to unexpectedly disappear for a long time like I did before. All I can do is continually reassure her (in a way that I hope is the truth) that I'm not going anywhere. And I do love hugs and snuggling with my baby!
                Diagnosed December 20, 2011
                Avonex: February 10, 2012 - March 16, 2013
                Tysabri: June 28, 2013 - May 23, 2014
                Betaseron: August 15, 2014 - March 10, 2015
                Aubagio: June 18, 2015 - current

                Comment


                  #68
                  Glad to know that you are back, although the plan is not ideal. it can give you more time with your daughter. Let it also be known that mom's (in most cases) are always there to help our kids no matter what.

                  Will you still have an aid come out to help you with personal matters like bathing, etc.?

                  Comment


                    #69
                    Tia, no right now I cannot afford an aid. Between my mom and my sister I'm covered. It's hard but we're surviving. I've applied for medicaid to get help with an aid, but haven't heard anything yet.
                    Diagnosed December 20, 2011
                    Avonex: February 10, 2012 - March 16, 2013
                    Tysabri: June 28, 2013 - May 23, 2014
                    Betaseron: August 15, 2014 - March 10, 2015
                    Aubagio: June 18, 2015 - current

                    Comment


                      #70
                      The DMD's - no guarantee

                      Originally posted by LostCupcakes View Post
                      my mri shows new active lesions. i'm to discontinue avonex. this means that i'm been stabbing myself uselessly for 2 years.
                      Totally sympathetic, but remember that all the dmd's are said to likely halt progression to a degree, but not necessarily stop it.

                      I am on Copaxone and seem to be worsening, though no lesions are lighting up active. Sometimes though just not appearing larger or active doesn't mean there is not some damage occurring.

                      I am thinking of stopping mine. I have some odd itching and such (not site reactions) and would like to see if stopping the DVD helps.

                      MS is a very puzzling disease!!!

                      Best to you...Diane
                      You cannot dream yourself into a character; you must hammer and forge yourself one.

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