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Thread: Aide expectations - Am I being unreasonable?

  1. #11
    Senior Member
    Join Date
    Mar 2006

    What you are looking for is perfectly reasonable. You are not a new injury, you are not in rehab. If you are satisfied with the level you are at (not remotely implying that you shouldn't be) you don't need to be practicing this skill daily! Your PCA should be doing what you need her to do so that you can use your time the way you want to use it.
    T7-8 since Feb 2005

  2. #12
    Ugg, ITA random. I've had aids like that and have found it very patronizing and paternalistic. A lot of them think of disabled people as a lazy children in need of guidance. We're not viewed as adults. What happened to you is no different than hiring a maid to wash your dishes only for them to tell you to wash them yourself. If you hire her to help you, she's supposed to help you, not tell you what to do. It's not a parent/child relationship, it's a supervisor/employee relationship. They are being PAID. AB's hire housekeepers and nannies all the time to do jobs they could very well do themselves without criticism.

    I've struggled with fatigue over the years and had one of those days where I literally didn't have the energy to get dressed and transfer into my chair...all extremely labor intensive activities for a quad. I asked my HHA if she could make toast and bring it to me and she told me no, that I wasn't getting it until and unless I got dressed and got out of bed first. Hello????? It wasn't a case of not knowing how to dress myself easily or quickly when I have to or when I can. I don't need rehab. nor do I need to be pushed, it was a fatigue issue. When I was in college, an aid came every morning to help me get up, shower, dress, eat and get out of the house all in 1 hour. If I had to do that myself, it would have taken me two hours, I would have completely skipped breakfast and been bushed by the time I got to school.

    Most executives have personal assistants who get them coffee in the morning, pick up the dry cleaning, run errands etc, all things they're physically capable of doing themselves, however, if the CEO of Microsoft was told by his PA to get his own coffee, he/she would be fired on the spot.

    Take KLD's advice.
    Last edited by antiquity; 09-07-2007 at 04:11 PM.

  3. #13
    Quote Originally Posted by LaMemChose

    Ever spend an hour putting your shirt on, Marmalady? Ever take fifteen minutes putting on your bra? This doesn't include bathing, getting a proper breakfast, putting away dishes afterwards, shopping for the food for that breakfast, putting on the shoes you can get on which likely won't stay on during a transfer. On and on.
    As a matter of fact I have. In addition to being the primary caregiver for my son. And holding a full time job. And having a relationship with my husband. Please don't get into the 'you're an AB so you can't possibly know how it really is' jabber.

    All i was saying was that I saw both sides of the coin.

  4. #14
    Quote Originally Posted by marmalady
    As a matter of fact I have. In addition to being the primary caregiver for my son. And holding a full time job. And having a relationship with my husband. Please don't get into the 'you're an AB so you can't possibly know how it really is' jabber.

    All i was saying was that I saw both sides of the coin.
    And in this case, there is no other side of the coin for Random.

    Random's full-time job is grad school in a quad body. There are days just living in these bodies is a 24 hour gig. Forget anything even remotely enjoyable or constructive or affirming.

    I cannot begin to tell you what it's like to be a caregiver. I won't try. The reverse is true.

    Unlike the housekeeper for which you wish, a PCA isn't a convenience for Random and many others. It's a necessity.

  5. #15
    Senior Member
    Join Date
    May 2006
    Central NJ
    Blog Entries
    Thanks everyone. It is through an agency but it’s a terrible agency so I’m sure nobody’s coordinating nurse and aide. I’m sure the nurse recommended help with everything—they always seem horrified I live alone. I live in a hard to serve area—traffic terrible between me and the towns where aides are more likely to live--so I just tolerate a lot; the good agencies don’t have people who want to travel for my limited hours.

    But I learned the real reason my new aide wants to avoid some things is because of physical limitations she has. So I’m going to try to work it out, get someone else for limited things.

    But it still really bothers me that they are trained to not help you with what you can do yourself—as if we were recalcitrant children or just lazy, needing someone to push us to aspire to independence. I know it’s true that that’s sometimes the training because others have told me that too. And some agencies actually have sections on their activity forms for aides to discuss your “progress,” just like my elementary school report card. It really offends me. Is there any place more central than each training program for me to try to effect some change?
    I wrote that before I saw the posts past #5. Marmalady, I admire your working to help your son and hold it all together, and if the mutual goal (or the loving parenthood goal, not knowing how old your son is) is still to help him achieve as much independence as he can, then struggling through that may be the way to go. But I do think it’s different when you’re trying just to live your life from where function seems to have settled for now. I will have much more success trying to change that by finding time and energy to get to the pool than struggling to put on my bra. But others have wonderfully made my point.

    MaryEllen, thanks, as always, for buoying my spirits. I need you to write my singles ad ;-). Oh to still be in grad school… I’m a bureaucrat now. But I will be an author one of these days.

    KLD, any chance your organization is in NJ?

  6. #16
    No, I am in CA, not NJ. There are no standards for training PCAs, although there may be state-by-state standards for training of HHA (which is what I suspect your aide is) or CNAs, since they are state certified. We developed our own course, which does not count for either HHA or CNA, but we do provide a certification of completion of the 40 hour class specific to SCI PCAs. Over the years we have refined and revised our program, and it is now being used as a model for several other VA SCI Centers in developing similar programs (including the Bronx VA).

    Find out where she trained and offer to give a free class on life with SCI for their students....a good way to get your message across for both students and instructors. We include such a panel presentation in our course.


  7. #17
    SCI nurse: Can you please tell me what HHA & CNA stand for? How do they differ from PCAs?

  8. #18
    HHA = Home Health Aide
    CNA = Certified Nurses Assistant
    PCA = Personal-Care Assistant

    A CNA is, from what I understand, a higher rating than a HHA. They have some medical training. Minimal, but some.

    An HHA is, again from what I understand, more for taking care of your house/laundry/cooking.

    4/6/97, car accident, C5.

  9. #19
    Quote Originally Posted by clueless
    SCI nurse: Can you please tell me what HHA & CNA stand for? How do they differ from PCAs?
    lol, we need a dictionary for all the acronyms on this site imo!
    thx kenf, just read it
    Last edited by mimin; 09-08-2007 at 11:18 AM.

  10. #20
    Mimin , there is one somewhere.
    oh well

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