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    In need of life advice

    Hey all,

    It's been quite a while since I've browsed this forum but I'm in a rough patch in life. I need some advice on what to do with my current situation. Since I haven't been on here in a while, let me give a brief reintroduction.

    I was injured on 1/14/2006 in a roll over car accident in which I was the passenger. My 5th cervical vertebrae burst fractured which rendered me a C6 level quadriplegic. At that time I was 18 and 3 months away from 19. I was going to college for Mechanical Engineering. Well, my injury put that on hold. After the battle of depression, grief, and adjustment to SCI life, I made it back to college. I went back to school at Miami University in the fall of 2009 and graduated in December 2015 with a bachelor's in science in Mechanical Engineering and a minor in Mathematics. I'm apparently addicted to learning and started graduate school at the University of Cincinnati. Currently, I'm in the Aerospace Engineering PhD program.

    I have big life plans and want to pursue them but I have a major problem in life. I live at home with my parents. My mother is a registered nurse and has been my primary caregiver essentially the entire time. Over the course of my injured life, I've always tried having caregivers either through home healthcare agencies or independent providers. The problem is that I can NEVER find a home health aide that is reliable. Let alone finding an aide, period. My Medicaid caseworker has always tried finding me aides but, especially in recent years, any of the aides we find don't want to make the drive to my house. A 20 minute drive is too far for nearly ever aide I've interviewed. The most recent aide my caseworker found seemed eager to work with me but on the day she was going to come to my house to meet me, she sent me a text on the day we were scheduled to meet saying she nearly made it to my house but the roads were to curvy for her to make the drive 5 days a week. I feel life a lot of these home health aides have no work ethic and couldn't survive in a 9 to 5 every day job. It is beyond frustrating for me.

    The worst part is that my mother and I do NOT get along at all. We're opposite personalities. We argue nearly every day and the mental turmoil is taking a toll on me. I want to live life. On my own. How am I ever going to be able to do that if I can't find reliable caregivers other than my mother?

    Recently, a Medicaid program worker had me review the Home Care Waiver which I'm on. I asked her a lot of questions regarding reliable and quality home health aides. It seems that it's a widespread problem that home health aides are generally unreliable, poor workers. So my worry is what does the future hold for me? If I'll never be able to live on my own with reliable help, what is the point of soldiering on? I'm at my wit's end. The tension between my mother and I is widdling me down day by day. I find myself being depressed and pushing people away. That's not what I want. I need a way out. So if anyone knows of any resources I could benefit from, or some key advice, I could really use it. I don't want to be the angry loner gimp. I've accepted that I'm stuck with a SCI, and can be happy, but this problem with lack of caregivers available makes me unhappy and angry.

    Sorry for the long winded post. I appreciate any responses!

    Thanks,
    Justin
    -C6 incomplete
    -injured January, 14th 2006 in roll-over

    #2
    Justin, in putting together a response it would be helpful to know the extent of the care you need.
    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


      #3
      I noticed you're in the Cincinnati area but you don't indicate exactly where. I know from fellow PT patients that caregivers can be a big issue but that Ohio is much better than Kentucky. I think reliable aides are far harder to find than skilled nurses. There's an effort in the Cincinnati Chamber of Commerce to bring more disabled into the local workforce. This includes things like housing and job-shadowing programs. I know they're already in discussions with UC on the shadowing. Anyway, I'm in Cincinnati too and I can help with networking if you like. I don't use aides but I know a few people who do.
      T3 complete since Sept 2015.

      Comment


        #4
        Thanks for the replies. The care I need is assistance with showering, dressing, and bowel program.

        With respect to Cincinnati, I'm roughly a 30 minute drive north. You're right Mize, skilled nursing isn't as hard to find but I believe that's because they're paid more than aides. Whenever my caseworker would post a listing on their provider network, several years ago I used to get multiple replies. But more recently I don't get ANY replies. I stopped getting replies about the same time that funding was cut. My mother is an independent provider and she was paid $55/hr (untaxed, no benefits) before the cuts, after cuts she's paid $41/hr. Aide pay was also cut. And as far as I know, funding was also cut for agencies. I have a major problem with the fact that funding was cut in this area because it directly impacts me as well as others. Those of us that NEED the care already had problems with finding caregivers before the cuts, now the problems are just amplified.
        -C6 incomplete
        -injured January, 14th 2006 in roll-over

        Comment


          #5
          Your mother is paid $41/hour to do your care??? In my area (CA) personal care attendants (not through an agency) make $9-15/hour to start. IHSS, which is our state Medicaid caregiver program pays at the lower end, and in most counties under IHSS you can designate a family member, or hire someone "off the street" to be your PCA. Bathing, dressing, transfers, etc. are not considered skilled care, so they will not pay for an RN or LVN to do that care. Even bowel care, while considered skilled care, will not get paid for from an agency through IHSS. Wound care, ventilator care, catheter changes (but not intermittent cath) are also considered skilled care.

          When my mother was alive and I was managing her attendant care, I recruited primarily through Craig's List. You have to know how to interview, check references, and get a background check done, but in 15 years of doing that, we had very few bad apples, and when that occurred, we replaced them quickly. Maybe we were just lucky, but you can see from previous discussions on this forum that many people have been successful in doing something very similar.

          (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
            DA6:
            Have you considered a 'transition' type plan, such as working closely with the Disability Services program at your University? Perhaps you could negotiate a plan for living in a dormitory with a couple of roommates who would be trained (probably by you; perhaps a nursing/medical student). Important that you clearly define the help you do and don't need, and write this up. Important to interview potential roommates. Perhaps they would get free dorm fee? (I don't know what's done with that). What is the transportation situation? Would you be able to travel from dorm residence by power chair; campus transportation; public 'dial a ride' for disabled customers?
            The above situation has been done before by MANY students. Important that you meet with Disabled Students Office at the University of Cincinnati. Colleges/Universities are required to have services for disabled students. Use them. Social life on a university campus is a plus as well.

            Don't know if you have considered this and that you let us know of your plans.
            Last edited by triumph; 4 Jan 2017, 9:02 AM.

            Comment


              #7
              Either room mate with another less disabled person, got a reversible colostomy or find a very young girlfriend? I'm not kidding by the way.
              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


                #8
                I think the point is that you need to take charge of your care needs, learn how to be a good attendant manager (recruiting, hiring, training, supervising, firing when needed) and become less dependent upon your mother. It is past time for you to be out of the house and on your own.

                (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


                  #9
                  I would contact UC and Ohio Vocational Assistance. There's also a group that helps with housing in Cincinnati. I can get you some names if needed.
                  T3 complete since Sept 2015.

                  Comment


                    #10
                    Hello DA6righthand,

                    I hear you. One of the most challenging aspects of living with SCI is our lives are no longer our own. I source my caregivers via kijji and craigslist and private pay. You have to be very selective and carefully interview. I find older, semi-retired people who like to keep busy most dependable. Nursing students are also very good, but the downside (for us) is they move on to nursing careers.

                    On an unrelated note - I don't know you, but am so proud for you and the level of education you have achieved and continue to pursue. Good on you!

                    Comment


                      #11
                      I was wondering if you have the funds to pay direct or are you reliant on the State in providing the funds for a caregiver. I know that makes a big difference when you are trying to hire caregivers.

                      My friend is dealing with a similar situation right now because the State will only give her 31 hours of caregiving and she must accept the providers given to her by the company that has a contract with the State. For the other hours she requires during the week, she hires people from Care.com and pays for them herself. The only other option she has is to go into a nursing home situation to get round the clock care and she wants to avoid that scenario.

                      Have you considered moving in with someone who is also disabled and share caregivers? Because then the caregiver will earn more money because they are caring for two people versus just one. That is usually a good enough reason for them to make the house call everyday. It is always about the bottom line for most caregivers.

                      Comment


                        #12
                        It's too bad there are no assisted living places throughout the US (I'm in Canada). There's one across the street from me .. unfortunately it's filled with the elderly but I've seen two young guys there. $3900 per month and all meals paid plus care and clean. It's a five floor multi-floor unit dwelling - right on the water. Quite nice with a nature trail and close to drug store, grocery, hair and other shops.

                        Also one in a poorer area of Windsor staffed 24/7. A lot of young and old - a mix - all disabled.

                        Another place is in London, Ontario called Cheshire Homes and it is staffed with attendants who only come when you call them - 24/7.

                        They aren't 'nursing homes' per se, but apartments where care is provided when you request it.

                        If someone would invest, I suppose a subdivision could have the same idea.

                        I'll require these services some day (probably sooner than later) so I've been thinking along these lines as well.
                        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


                          #13
                          Hi DA6righthand. After all those good ideas and possiblities, I will still offer you my perspective. I was in the third semester of my Masters when I got hit by a car. I'd wanted to go right back to college and finish it, but instead I landed in nursing homes. We'd be hard-pressed to prove whether you want away from your Mother worse than I wanted away from those nursing homes. I didn't get to go back to college, but I did get to go home to my own house. I've been here a year and love it. I haven't given up on finishing a Masters...though maybe I'll change to a different Masters. Where we differ greatly is our level of injury. I'm T9 incomplete. You definitely need more "hours" than I do. Even so, are there government subsidized apartments that you could apply for? I would choose independent living over getting the PHD. It would be a great loss. And if you have 'funding', that would likely be lost...and might never be regained. You might even be 'on the hook' to have to pay back part of what they have spent on you. But do whatever it takes to "have a life"...in my opinion...even if it means not finishing your PHD.
                          Female, T9 incomplete

                          Comment


                            #14
                            It appears to me that you are qualified for a well paying job? Maybe put your PhD on hold, get a good job that pays well and pay a care giver what he/she is worth to you. I truly believe that, in the care giving world, you get what you pay for. i was my son's full time caregiver for over 3 years. It takes its toll not only on your relationship, but also physically. My back will never be what it was. Doesn't your mother know anyone: student nurse, friend of a friend, etc. who would like to make the extra money? When you find the right person, offer them additional $$$ (under the table). I wish you the best of luck! Bowel program blues and caregiver issues are a nightmare with a sci.

                            Comment


                              #15
                              If you are funded through a Medicaid/Medicare waiver program, please think twice about paying your PCA extra money. In CA, with the IHSS program, that is strictly prohibited, and if discovered, can result in your loss of IHSS services. You can provide additional compensation in other ways though; such as free rent, meals, paid transportation, etc. etc.

                              (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

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