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    Please help...parents want to put me in a nursing home

    I am copying and pasting this message I sent to my college pastor at church. I don't have the emotional strength to write it all out again.


    I could really use some prayer right now. I just sat down with my mom and step dad and they told me that in my current condition they feel they can't properly care for me at home and want to put me in a nursing home. When I had the generator of my spinal cord stimulator removed I lost the little ability I had left in my legs to stand and walk short distances. This has kept me from getting to my room on the second floor and as such I am living on an air mattress downstairs. I got my generator placed again on Monday, but I can't start physical therapy again until after my stitches come out next Friday. My first scheduled physical therapy appointment is on 12/20, my brothers birthday.
    My mom said that she worries about me all day when she is at work, that I don't have what I need, that I can't get lunch (which I have been managing fine), that I might fall (which since I am not standing is not a worry of mine), that there might be a knock on the door that I can't get (we have stairs that lead to the door), etc. She said that there are times when she is at work where she just wants to leave and come home and take care of me, but worries about losing her job in the process.
    At this point in time they are looking at using my Medi-Cal coverage to put me in a nursing home in Ontario. I feel so dejected, and that I don't belong just because I can't climb the stairs to my room and they (my mom and step dad) don't want to have the air mattress downstairs when my brother and his girlfriend come to visit from Italy (they arrive on 12/19). So instead of me being in MY home for the holidays, I will likely be in a care facility where I have no family, no friends, no comforts of home, etc.
    I feel helpless in this situation because it's not like I can just stand and walk. I offered to scoot up the stairs on my butt, but they don't want me to do that in case of emergency. I feel like I am not wanted in my house right now and that I am a burden because of my disability.
    I don't know what to do, I don't know what options I have, and I don't know where to turn.
    Please pray for me to have peace and guidance in this time. That when the right solution comes along I feel peace in making the decision. I want to be with my family during the holidays and not feel cast aside because my ability decreased and my house won't accommodate me in my current state.
    Thanks,
    Mandy

    Any thoughts are appreciated. I am having a hard time with the fact that I am looking at the possibility of going into a nursing home at the age of 24, for an unknown period of time. When I started back to physical therapy prior to getting my spinal cord stimulator generator taken out (so I could have an MRI of my brain) my PT was stunned that I was so ambulatory when my manual muscle testing was so low. I think that I have learned to use my spasms to my advantage, but also that the spinal cord stimulator was programmed in such a way that it helped me function better when standing and walking short distances.
    I hope that I can get back to the point that I was prior to surgery, but I question if I am now going to have to live with the lesser ability I have now. I am fine using the chair, mentally it doesn't bother me, but I think it bothers my mom and step dad to have to see me use it in the house ALL the time. This house is not ideal for me, but I don't have the means to move out on my own into an accessible place.
    Once I am cleared for PT it is time to work my ass off so I can get home ASAP. At this point they haven't done all the research and paperwork for the nursing home (can they force me to go? should I just decide to live with a friend whose house is more accessible (there are 3 disabled people in their house)? what should I do?)
    Any advice appreciated!
    Mandy
    ~Mandy~
    SCI as a result of spinal surgery
    TiLite Aero Z!!!

    #2
    Dear Mandy I say No no one can force you against your will .
    I can relate to your feelings , for me it was a low point , I alway's looked for better solution because it is not my cup of tea .
    Does your friend know your situation with your parents ?

    Maybe moving in with your friend will put your mind at ease . It seems if possible a better solution.

    Yrs back I felt like a outed family member so it was no easy road for me basicallly I am the black sheep of the family after they put me in one of those places I just felt so trapped like a dog in a little cage too confined it was suffocating in my situation ppl crying , coughing , yelling , pooping and such plus they were like very controlling

    Being I dont take orders lol well at all I made up my mind set a goal and came back
    The head honcho's knew I was focused on living not rotting away in that place .

    I like quietness out in the country , I dont have to hear car horns or eat same meal as everyone
    but I was determined to just come to my ol home and go do thing's @ my pace .
    It is your life only you truthfully know what is right for you .
    Darn SCI is very unfair

    I hope you find whatever you seek and live without worrying
    It definitely is heart wrenching and you are not alone theres hundreds , thousands of us world wide who all feel like you do

    This is what lifes about .
    Alway's
    GL

    Comment


      #3
      It doesn't sound like your parents are very supportive ... if I were you, I would leave and never speak to them again. Make sure you have a place to live and an income first, though!
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

      Comment


        #4
        Try contacting your nearest Independent Living Center to see if they can assign you an advocate who can identify accessible housing you might apply for. If you are receiving SSI and have Medicaid you should be eligible, you may also be able to access personal care services if needed. Get started right away as it seems your parents are not advocates for you.

        Comment


          #5
          Since you had deterioration of your disability following this surgery, I would strongly urge you to try to get an inpatient acute rehabilitation stay to improve your function, prepare you to live on your own with your limitations, and help you to find an alternative living situation outside of a nursing home. Please do this! If you are in the San Gabriel Valley area, I would recommend that you go to Casa Colina in Pomona. They know what they are doing.

          I would also recommend contacting your local Independent Living Center.

          Keep in mind that no one can put you in a nursing home against your will, as long as you are a competent adult. Refuse. It is your right. Tell your mother and step father that you will remain where you are until you find an acceptable alternative, with or without their assistance.

          (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.

          Comment


            #6
            Mandy, OMG, I am at a loss for words. KLD and the others are right, you need to take that next step towards independence.

            You need to go to a rehab like Casa Colina to get more independent. After that, the world is yours to dream.

            I'm here anytime, 24/7 if you need to talk. Ya have my number.

            Comment


              #7
              I agree with the others. Even if your parents have concerns, they do not understand the perils of nursing homes. Your risk of picking up infections, being subject to neglect, isolation, etc. are increased there. If they cannot accept that, they do not have your best interest at heart. Do not yield to their pressures until you find a reasonable alternative.
              You will find a guide to preserving shoulder function @
              http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

              See my personal webpage @
              http://cccforum55.freehostia.com/

              Comment


                #8
                They talked to my surgeon this morning who told them to take me to an acute hospital locally for "intractable pain, low grade fever and inability to ambulate" and have me admitted. Once I am there for 3 days I will qualify to be transferred under my medi/medi benefits to a place such as Casa Colina. I go there for outpatient PT anyways, so that is where I would like to go for inpatient. I keep telling them I don't need to go to a nursing home, that a nursing home won't have the level of skill in SCI care that Casa does, and that any PT at Casa is better than being inpatient at a nursing home.
                I am getting dressed, having breakfast and going to a local hospital. My parents will leave (no way to discharge if I can't get home) and I will be admitted.
                I feel like I am being pushed away by both sides of my family, since my dad won't take me in either. I know that I need the care of a rehab hospital, but I wish that they would have admitted me right after surgery, not waited until I got comfortable in my house and then admit me.
                I have had more emotions in the last 12 hours than I have in a long time. Anger, frustration, sadness, betrayal, confusion, etc.
                This next ______ time is going to be hard, and I know I will find a way to get through it, but right now my outcome looks dark.
                I know that I will be inpatient right around the holidays. My brother is coming to visit from Italy (he is in the Army), my best friend is coming to visit from Ohio and bringing her new baby girl, etc. This is the time of year were most want to be home with their families, and here I am being pushed out of my home.
                If I could afford to live on my own I would...but I don't get/make enough to do that. I also know that when I go inpatient, my Social Security and SSI will dwindle down to $35 a month, the rest goes to the inpatient hospital. I won't have money for even the small bills I have each month.
                My parents think that they will worry less about me if I am in the hospital, but I doubt that.
                My parents want me to get "better" (aka walk again) and I can see how that would restore a sense of normalcy for them, but right now I am having to live with the fact that I can't (for whatever reason, maybe we just need to get the programming in my spinal cord stimulator back to where it was) and if I don't re-gain that ability I will be no worse off (I don't see my chair as a bad thing), but that if I do re-gain the ability to walk short distances, people will expect that, even though they don't necessarily see the pain it causes me to walk that short distance.
                Mom is worried about me in the kitchen, about my ability to get food for myself. But I am doing better in the chair than I was out of the chair. I don't know if she realizes that when I am standing/walking I am constantly battling gravity trying not to fall. When I use my chair to do the same task, I get it done quicker and safer, but she worries because I am HAVING to use my chair.
                I know for those of you who have been around a while, and E&J was a porsche compared to the chairs before that time. My chair is my porsche, it is protecting me and keeping me safe when I need it.
                Gotta go...
                Mandy
                ~Mandy~
                SCI as a result of spinal surgery
                TiLite Aero Z!!!

                Comment


                  #9
                  The inpatient rehabilitation should be a great help. You will need to discuss goals and a plan of action with your occupational and physical therapists to maximize your potential to live independently when you leave rehab. This may also be a good time to appeal to your mother to come to the facility and talk with the staff about your needs and abilities.

                  Try to work toward setting goals with your parents too. If you can agree on a plan, they might be willing to bridge the gap between getting out of rehab and finding suitable living arrangements.

                  Do you have a job? What are your job skills?

                  Good luck in rehab and trying to figure out what you want and need to do to become independent. It will be hard work, but it will be worth it when you feel like you are more in control of your life.

                  All the best,
                  GJ

                  Comment


                    #10
                    GJ

                    She is on SSI.
                    Anything worth doing, is worth doing to excess

                    Comment


                      #11
                      Originally posted by skippy13 View Post
                      GJ

                      She is on SSI.
                      Skippy,
                      I don't mean to be insensitive to that. I understand the limitations. My point is that Mandy finds herself in a situation where her father, mother and step father are backing away from caring for her and providing a place to live. She is justifiably unhappy about that and while maybe I didn't say it well, I am trying to encourage her to think about a future. Her father, mother and step father won't be around forever and at age 24 she needs to consider that. I know a few people with disabilities who were once on SSI and are now living independently. It can be done. You have to seek out resources, help and guidance. I'm not discounting the hurdles she faces. At the very least this live in rehab experience may help her reach her parents and try working something out with them.

                      GJ

                      Comment


                        #12
                        Can you go away to school?
                        Get involved in politics as if your life depended on it, because it does. -- Justin Dart

                        I shall not tolerate ignorance or hate speech on this site.

                        Comment


                          #13
                          I was admitted to the local hospital today after hours in the ER. My parents dropped me off knowing that as a "pain patient" with a low fever (99.6 in ER) they would want to give me a dose of pain meds and wheel me back out to the car. The nurse practitioner that I saw was p*ssed that my parents had dropped me at the door and wouldn't come get me. He said a lot of things, but he said that not having the ability to sleep in my house, use the shower, cook etc. was not his problem (which I know, but I can't get where I need to go until I have been inpatient here for 3 days). He called the hospital social worker (who wasn't good for much), adult protective services (who basically said she has a medical problem and is NOT being abused, what do you expect us to do? Come put her in motel 6? That's not what we do. Call the police.) the local police came and said this is not a criminal matter, it is a civil matter and a medical case. Both APS and the PD thought I needed to be right where I was (my parents welcomed the PD in to the house and showed them the living situation I had with the decrease in mobility and they were definitely in agreement that with the pain, fever and inability to ambulate I needed to be in the hospital).
                          It was hard to get a doctor to admit me, but a doc finally agreed to admit me and has been great. He said we will start working on a transfer to Casa Colina on Monday so that I can get the intense PT/OT that I need while there. I definitely need to be in a place like Casa where they are experts at SCI care. I have done most of my outpatient PT there so I am very comfortable with their ability.
                          I finally got to my room after 8:00 was able to get a sandwich tray from maternity since dinner was already over. PT is gonna come start working with me tomorrow and I hope that I will regain my lost mobility soon!
                          I need to get off and try to sleep. Pat I will call you later. My mOm is supposed to bring my computer tomorrow if the hospital has Internet connection. That will make it easier to respond to some earlier posts.
                          Thanks for everyone's help and support!
                          Mandy
                          ~Mandy~
                          SCI as a result of spinal surgery
                          TiLite Aero Z!!!

                          Comment


                            #14
                            wow what a tough day! I was in a very similar situation in 09. No one can make you do anything against your will unless you sign over power of attorney, so I would recommend never doing that unless you can completely trust the person.

                            my dad and stepmom tried to get me admitted to a long term facility, and when I refused they tried to get me to sign over POA claiming it was so they could do my disability application for me (POA is not required for that.) And a couple months before this, a friend abandoned me in the ER when the hospital wouldn't admit me! They eventually did. After the issue with my dad and stepmom, I was discharged from where I was and admitted to a different hospital. When I got out, I moved in with a friend to 'get back on my feet' since I was unwelcome at the parents place and unable to live alone even if I could afford it. You CAN and will get through this! So hang in there. Check out the resources suggested here. Even if things have to get worse before they get better, they will get better!

                            oh, and I was 24 when that happened to me as well! 26 now.
                            Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                            I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                            Comment


                              #15
                              Oh Mandy, what an ordeal. I can't imagine how you must feel.
                              Things may be going your direction now and I'm rooting for you sweetie.

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