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Thread: Some help/advice needed

  1. #1

    Some help/advice needed

    Hi,
    I'm a quadriplegic (C4/C5). I currently live in Israel and I'm studying in a university here. I have a chance to do a one-year student exchange program to the states. I would very much like to do this and have found no obstacles other than caregiving.

    My current situation is as follows:
    I have three caregivers. They do not work at the same time however I do have a caregiver with me 24 hours a day. I cannot handle the bladder nor any of the bathroom necessities by myself. Nor can I make food/get around easily/pretty much anything else you can think of totally independent. I do do a lot of things by myself however I need some assistance with the majority of my daily routine.

    I cannot afford to take all three of them. Most likely I will have to find a caregiver locally. How do I go about doing this in the states? What are the rates like? What do caregivers do/do not do in the states?

    Thanks for your help,
    Eitan Waks

  2. #2
    I would call the university you will be going to in the states and ask them for advice as they should be familar with what services are available in the area.

    Others will have better advice but one thing I want to add is be sure to have the caregivers checked out. Make sure they have references AND CHECK THEM. Talk to the potential caregivers before coming and make sure they are comfortable with any procedures such as catheterization. There are unfortunately a few bad apples out there but a lot more good people.

  3. #3

  4. #4
    If you private hire (not from an agency) you can have PCAs do whatever you direct them to do. An agency will often restrict bowel and bladder care to only licensed staff, which will be VERY expensive.

    You would not be eligible for state or county funded PCA programs as a foreign student, so you would need to be prepared to private pay. Live-in help is negotiated individually and rarely done on an hourly basis since you provide room and board. For hourly help, depending on the area, the costs will be in the range of $10-15/hour (USA).

    Are you on a ventilator? None of my clients who are C4 who are not on ventilators have 24/7 attendant care. They learn to group their care into 2-3 hours in the AM and 2-3 hours in the PM, and then are on their own. Of course for you it would be important to live someplace where you can get your door open yourself, and in and out of an apt. by yourself, have close-by accessible public buses or paratransit (or school-provided transportation), and perhaps a friend or roommate who would help with meals (at least at lunch). You might want to work on re-organizing your care now so that you don't need to have someone with you all the time, and are not so dependent upon a PCA. Of course if your family is wealthy and can afford 24/7 attendant care at USA prices, you might not need to do this. You might also look into a turning mattress you can use so you don't have to be turned at night. An environmental control unit (ECU) would also be important for safety and maximum independence when you are lone.

    The university may have some ideas on how to find private PCAs, but you will probably need to recruit your own, through ads in the paper, posting signs at the school, posting on Craig's List, etc. This can take some time, and you may have to burn through a few PCAs before you find a "keeper". You should plan to come to the USA with the PCAs or family members you need until you can replace them.

    (KLD)
    Last edited by SCI-Nurse; 05-18-2006 at 10:24 PM.

  5. #5
    noryn,
    thank you for the advice. I hadn't thought about calling the university and asking them for help. I'll definitely do that. I will also interview each PCA before hiring. The apples situation is pretty much the same all over the globe. I guess it's just a matter that a more comfortable doing it in the vicinity of my family and friends here in my country.

    michaelm,
    thanks for the link, I'll check it out.

    SCI-Nurse,
    were I live, in Israel, the situation is a little different from the states I suppose. I do not private hire rather I use an agency. The agency that a use is a general manpower agency not something specialized for caregivers. I am funded by the Defense Department as I was injured during service in the Army.
    I do not have US citizenship yet however I do hold a green card and permanent residency. Does that make the eligible for any type of care?
    You mentioned that live-in help is negotiated on a personal basis. Could you give me a ballpark range of about how much it should be per month/week/day?
    No, I'm not on a ventilator. I function more like a C-5. I have use of my deltoid's and biceps as well as a little bit of pectorals. I do not have use of my wrist extenders. I also do not have use of my triceps. I have to say that I'm a little bit amazed and a jealous with regards to your third paragraph. I also got a little scared when I read it. I'm not sure that I could do with two or three hours in the morning and two or three hours a night. My current situation does not allow me to travel freely by myself as the public transportation in my city, Haifa, is not fully adapted for wheelchair users. In fact, I would have to say that most of Israel is not wheelchair accessible. This is one of the main reasons that I need my caregivers. They help me get places. I think it would be easier to get answers applicable to my situation if on a further elaborated on my use of caregivers so here goes:

    Whiskey hen I wake up in the morning I ring my caregivers which sleep in my apartment. They come to my bad and help me transfer to a shower chair. My morning routine consists of using two Contalax pills (I know that the correct word is not pill is however I can't find the correct translation for the war that I'm thinking of [I insert them into my rectum]). I also take my morning medicines (this time I mean pills). After about a half-hour more or less I take a shower. I need assistance both for the bowel routine as well as the shower. After I finish taking a shower I transfer back to my bed were I get dressed (with help). Afterwards, I transfer to my chair. I think that this is a good time to mention that I usually use a manually assisted chair. I prefer using one of these for several reasons. The first is that I feel better sitting on one (emotionally). I feel very handicapped sitting on a power wheelchair. The second reason is that I can get around very easily on flat surfaces as well as not too steep incline's.
    My day usually consists of going to the university. In order to get there a drive, or rather am driven, to the campus from my apartment. Upon arrival to the campus I going to lectures by myself. During the lectures I do not need any assistance. During supplementary classes (another word that I don't know how to translate properly [classes in which to exercise the material that you learned in lecture]) I needs to write. In order to write to have a small opera is that I put on my wrist. I need assistance doing that. This brings me to another point, I cannot open my bag by myself. It also means I cannot take the wallet out by myself.
    Eventually, sometime during the day I will need to go to the bathroom in order to urinate. I use a catheter. I do not have one permanently attached and cannot do the procedure by myself therefore I need assistance from my caregiver. My caregivers do not need to be with the all the time during the time that I am at the University. They're free to do what they wish to do. I call them with my cell phone if I need them.
    When classes are over I go home. At home I need to make food for myself. I can eat alone but in order to do so only need to put a small apparatus on my hand so that I can grip of the utensils. In order to drink I need assistance.
    Eventually I will go on to bed to relieve pressure. I guess I also earned some rest by this time of day. After her usually about an hour and a half I go back to my wheelchair. I either study, watch TV, practice photography in my studio (my hobby) or do an assortment of other things.
    At night I'll probably go out with a bunch of my friends to the local pub/bar or to a movie etc. when I get back I'll probably get on to bed and go to sleep. My character helps me get into the position in which I sleep. I do not switch sides during the night. I used to use this in the beginning of my injury however, because I'm spastic I tend to move during the nights and therefore do not need to be manually repositioned in order to prevent pressure sores.

    This is a description of what could be considered a 'normal' day. In fact, most days are not normal such as today. Today woke up at around 11 (TGIF). I spent most of the day surfing the net and procrastinating around the house. At around 16:30 I went out of the house and rode my hand cycle for about an hour and a half on a rural road about 20 minutes from my apartment. I came back, made dinner, ate while watching TV and got on to bed to surf the net and read a book until I fall asleep.

    I hope these descriptions will better aid you in pointing me in the right direction. What type of PCA do you think I need? The think it's possible to have 2/3 hours in the morning as well as in the evening for my type of daily routine? I'm pretty sure that if I could do it would be quite liberating however, as I mentioned before I'm apprehensive about the the whole idea, if not downright scared.

    Thank you so much for your help,
    my name

  6. #6
    Live-in help in my area runs from $1500/month and up, and by law you must give the person at least 1 day off each week, so you have to have at least 2 attendants if you use live-in.

    Most schools have a program where you are provided with (as needed) note takers and assistance in class. Some provide transportation around campus. Since you use a manual chair, do you depend upon your PCAs to push you from class to class? I would REALLY recommend a power chair in the USA. There are lots of hills, and you would be so much more independent with a power chair, both at home and in the community. A tilt-in-space chair would also allow you to do your weight shifts independently.

    Have you considered an indwelling catheter so you do not have to be dependent upon caregivers for intermittent cath? We rarely recommend intermittent cath for people who cannot do it themselves, as it puts you at risk for unrelieved autonomic dysreflexia if your PCA does not show up or you need to be cathed early.

    (KLD)

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