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Independent living after SCI

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    Another key, DO NOT put brain to "I can do this is some fixed time." Forget about time and keep trying. I have put a lot of pieces back together this way. That is exciting. I do wish I knew how many more pieces there are. This does get me pissed off.

    Originally posted by liveinaide View Post
    That's very interesting. He is working on transfers very seriously and I think there has been small improvement in the three weeks I've been here. He is trying very hard to make progress. But in ones late 60's, building muscles seems to be a pretty slow process.


      When I started reading this thread I was under the impression that you knew the family personally for some time, i.e., a friend of the family who is also a paid PCA. As a friend of the family, I made the assumption that they had asked you to research information and that you knew their history at some level. As it went on it was clear that you did not and were doing it solely as a paid PCA without their knowledge. I am also very confused about what your motives are in posting. Is it to learn more to help the family that have hired you, or is it to figure out whether this is the job for you and what the long term job security is?

      I am a family caregiver and I am also responsible for hiring and managing PCA's, which we do directly without an agency. I would have a HUGE PROBLEM if I got on a forum and found someone writing about my family situation if I had not given direct permission to do so. You provided enough information that probably anyone in your area could easily figure out who you were talking about, and even I could probably figure it out on the internet if I did a little searching. It would be immediate dismissal for being in breach of our confidentiality clause which states that a care provider keeps everything secret what he or she knows about the client and his family, partner or business relationships and activities. Where I live, it would also be against the law and I would file a complaint, which might result in being barred from working in care.

      I think if you would have asked a direct neutral question like "does anyone have advice on the best transfer techniques for a SCI L1 with a heart condition" nobody would have objected, questioned your motives, or felt that you were overstepping the bounds of client confidentiality. Even after others said something about you posting private information, you continued to post even more information about your client and their family, with very little evidence that they were involved with what you were doing.

      I just read that you have only been on the job for 6 weeks. I am a relative newcomer when it comes to caregiving at 5 years, but I have extensive knowledge of the medical and life history of the person I provide and arrange care for. I can tell you that there is nothing that makes me more angry than when a total newcomer who does not have knowledge of the WHOLE situation oversteps the bounds of what they were hired for and tries to impart their limited knowledge with unasked for advice. It is a huge drain on my energy because I don't have the time to provide them with full knowledge of the situation, and without that their advice is USELESS. It also indirectly shows an arrogance that you can provide better solutions for them than they can provide themselves, regardless of what you may perceive as their current level of understanding.

      If you are truly doing this to learn more to help the family that have hired you and plan to continue posting about them, I URGE you talk to the family and ask them if they want you to do this on their behalf. Don't be surprised if they say ABSOLUTELY NOT. Probably the reason that you do not have all the of information is that they do not want you to have all of the information. In 5 years I have NEVER found someone that I would have enough trust in their character or knowledge of the whole situation that I would ever give them permission to post so much information or get this involved.

      I might give permission on a specific topic that also affected the PCA's ability to provide care, like the example I gave earlier about transfers techniques, but I would also be asking for a link to the post they had made. NEVER would I give blanket permission for a PCA to delve into and talk about our whole life situation on any forum or venue. Even if this were a site for professional care givers, which it is not, I think they would also be telling you that you are over stepping the mandate of your job and client confidentiality. Would you want someone doing that about your kids or another family member???

      I've just read some other recent post you made about your clients, and now realize that you are probably a troll. If you are not, a good way to know if they gave you permission would be to provide the family the link to the posts and have them be in contact with the moderators to verify authenticity. I highly doubt that will happen, and unless I see something to that effect, I will not be responding more to this or other posts that you have made, and I hope the moderators ban you. I think you have taken a lot of us for a ride and are a very adept troll, mostly likely with personal problems of their own. In that case, I hope you seek some help.
      Last edited by elarson; 23 Jun 2014, 11:03 AM.
      Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).


        Well put!
        69yo male T12 complete since 1995
        NW NJ


          Yup good job ellyn!
          T6 Incomplete due to a Spinal cord infarction July 2009