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Thread: having trouble with caregiving in florida

  1. #11
    Quote Originally Posted by Eric.S View Post
    thanks for the suggestions.. What is the ILC? I'm also not sure how to post ads at a local college. do I physically go there and post the listings?
    Independent Living Center = a consumer run non-profit organization designed to advocate for and provide resources for people with disabilities and promote community integration and deinstitutionalization: http://www.virtualcil.net/cils/

    Most universities have a student job center and/or housing exchange office. Contact them first. Also, if there are any programs for health professional education (nursing, pre-med, PT, OT, etc. etc.) contact their offices and see if they have bulletin boards you can post notices on, or even announce job openings in class. It varies by the school if they will do this or not.


    Quote Originally Posted by Eric.S View Post
    911 is an option but I would like to have someone to accompany me to the hospital. I really have no one in the area to depend on.
    While that is ideal, it may not be practical. I would call and speak to the local paramedics organization manager and tell them about any special needs you have so that if you must be transported they will be informed. This would also mean having prior arrangements with your physician to contact and work with the hospitalist that would undoubtably be your physician if you were actually admitted.

    (KLD)

  2. #12
    Senior Member zillazangel's Avatar
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    Don't even try med students, they are wayyyyy too busy. And I've never had luck with nursing students, but sometimes college students have worked out for us. Usually our best luck comes with people who aren't in school but have other low-level jobs - bagger at grocery store, waiter (low rent, not top notch places lol!) etc. In the last 7 years, every one of our PCAs came from craigslist. Just set up a separate email account for replies to your ad though, that way you won't get buried in email and you can abandon the account in case someone turns out to be a wacko (trust me, it will happen!)!

    As for someone coming with you, don't bother. Your PCA won't know your medical conditions well enough to be useful.. YOU have to be your own advocate, you can never rely (even slightly in my experience) on someone you pay to care for you. I don't mean to sound harsh, but I think you have a more idealized version of a live-in PCA than what our experience has squared up with.

    Feel free to email me and I can give you my phone number if you want to chat about it more, I sent you my template so hopefully that'll be a place to start.

    ETA: I agree with KLD re: paramedics, fire. Our home is registered with the fire department and paramedics as a special needs house, and so if we call, they come no matter what and very very fast. Even a hang up call .... as I found out when someone dialed it accidentally and then 90 seconds later there was a cop banging on my door. Its very comforting actually. Whe we call 911, our address comes up with the info about Chad's condition. They also put us on priority so that no matter what, they come PRONTO. We also have on file the key code to our door (we don't use keys, we use codes) so they can come in unassisted if needed. Call your local fire dept and they'll work with you on it.

  3. #13
    So do y'all think its safe to be trapped in bed over night? Also is there a living situation comparable price wise to the live in situation? what are some common living setups?

  4. #14
    I don't consider someone "trapped in bed" if they have a phone or emergency button they can use to call for help in an emergency. Many of my clients do this and as zillazangel states above, they get prompt response from the EMS when they have already made these arrangements in their community.

    My mother has a live in and part time attendants. The live-in also has another job, so we use the part-time people for when she is at work (evening shift). She also has weekends off, so the part-time people cover for her then (although she still sleeps there on the weekends, and is available for an emergency). She has her own phone and computer cable lines which she pays for, and she provides her own food except for the meals she prepares for my mother (which she shares in). We pay her a set amount per week (not hourly). She provides her own toiletries, clothing, etc. If she takes my mother to a movie or a restaurant, we pay for it. If she goes on her own, it is on her dime. Of course we provide my mother's supplies. She is the only non-family member we allow to drive the van currently, so she is also responsible for taking my mother for her doctor's appointments and occasionally out to a restaurant or a movie or shopping. All of the attendants run other errands and purchase groceries. They are expected to keep their cell phones OFF when on duty. All have a contract and have had background checks done.

    The part time people are paid hourly. They can accompany her on paratransit. They also get to eat food we purchase when preparing meals for my mother.

    We allow all of them to use the TV when watching something with my mother (the live in attendant also has her own TV). Although we have a gardner, the attendants also help with some things like growing tomatoes or picking our avocados. I do other yard work and house repairs when I visit, but myself or my sister or bro-in-law (who takes care of my mother's bills) will also arrange for repair work commercially if needed (plumbing, electrical, etc.). The attendants contact us if these needs are noted.

    (KLD)

  5. #15
    Quote Originally Posted by SCI-Nurse View Post
    I don't consider someone "trapped in bed" if they have a phone or emergency button they can use to call for help in an emergency. Many of my clients do this and as zillazangel states above, they get prompt response from the EMS when they have already made these arrangements in their community.

    My mother has a live in and part time attendants. The live-in also has another job, so we use the part-time people for when she is at work (evening shift). She also has weekends off, so the part-time people cover for her then (although she still sleeps there on the weekends, and is available for an emergency). She has her own phone and computer cable lines which she pays for, and she provides her own food except for the meals she prepares for my mother (which she shares in). We pay her a set amount per week (not hourly). She provides her own toiletries, clothing, etc. If she takes my mother to a movie or a restaurant, we pay for it. If she goes on her own, it is on her dime. Of course we provide my mother's supplies. She is the only non-family member we allow to drive the van currently, so she is also responsible for taking my mother for her doctor's appointments and occasionally out to a restaurant or a movie or shopping. All of the attendants run other errands and purchase groceries. They are expected to keep their cell phones OFF when on duty. All have a contract and have had background checks done.

    The part time people are paid hourly. They can accompany her on paratransit. They also get to eat food we purchase when preparing meals for my mother.

    We allow all of them to use the TV when watching something with my mother (the live in attendant also has her own TV). Although we have a gardner, the attendants also help with some things like growing tomatoes or picking our avocados. I do other yard work and house repairs when I visit, but myself or my sister or bro-in-law (who takes care of my mother's bills) will also arrange for repair work commercially if needed (plumbing, electrical, etc.). The attendants contact us if these needs are noted.

    (KLD)
    How much does that help run you weekly, if you don't mind me asking?

  6. #16
    Senior Member zillazangel's Avatar
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    It must feel tremendously scary to be in bed with no way to get out if needed. I had another friend, a quad, who lived alone and I just hated knowing he was there alone even though he had a phone and computer available. You can be vigilant though and have a phone available and a back up system too - there are things you can wear around your neck to summon help in an emergency and such, I have no idea what those cost though. Anyway, good luck Eric.

  7. #17
    Moderator jody's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    I don't consider someone "trapped in bed" if they have a phone or emergency button they can use to call for help in an emergency. Many of my clients do this and as zillazangel states above, they get prompt response from the EMS when they have already made these arrangements in their community.

    My mother has a live in and part time attendants. The live-in also has another job, so we use the part-time people for when she is at work (evening shift). She also has weekends off, so the part-time people cover for her then (although she still sleeps there on the weekends, and is available for an emergency). She has her own phone and computer cable lines which she pays for, and she provides her own food except for the meals she prepares for my mother (which she shares in). We pay her a set amount per week (not hourly). She provides her own toiletries, clothing, etc. If she takes my mother to a movie or a restaurant, we pay for it. If she goes on her own, it is on her dime. Of course we provide my mother's supplies. She is the only non-family member we allow to drive the van currently, so she is also responsible for taking my mother for her doctor's appointments and occasionally out to a restaurant or a movie or shopping. All of the attendants run other errands and purchase groceries. They are expected to keep their cell phones OFF when on duty. All have a contract and have had background checks done.

    The part time people are paid hourly. They can accompany her on paratransit. They also get to eat food we purchase when preparing meals for my mother.

    We allow all of them to use the TV when watching something with my mother (the live in attendant also has her own TV). Although we have a gardner, the attendants also help with some things like growing tomatoes or picking our avocados. I do other yard work and house repairs when I visit, but myself or my sister or bro-in-law (who takes care of my mother's bills) will also arrange for repair work commercially if needed (plumbing, electrical, etc.). The attendants contact us if these needs are noted.

    (KLD)
    my past care job was very much as you describe for your live-in.

    grocery shopping though was usually part of weekly activities, and the lady I cared for came along, and I would sometimes fit my grocery shopping in as well, though we paid seperate at the register. her current aid has about the same arangement as I did. we used out own cars, and she reimbersed us for gas once a month. that usually came to less than $20.

  8. #18
    Quote Originally Posted by zillazangel View Post
    It must feel tremendously scary to be in bed with no way to get out if needed. I had another friend, a quad, who lived alone and I just hated knowing he was there alone even though he had a phone and computer available. You can be vigilant though and have a phone available and a back up system too - there are things you can wear around your neck to summon help in an emergency and such, I have no idea what those cost though. Anyway, good luck Eric.
    Thanks, and I appreciate all your help.

    I'm trying to see what all my options are before I commit to anything and it seems a live in is still the best option financially. Maybe a night live in and day part time would be ideal but i doubt I can afford it. it seems that without room and board $400.00 weekly just isn't enough, especially when you start to break things down hourly...

    hopefully through therapy i'll become independent enough to not need so much help...

  9. #19
    Senior Member Clipper's Avatar
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    Eric,

    I read elsewhere that you are T6. If I were you, maximizing my independence would be of primary importance. There's no reason why someone with your level of injury would need a caregiver, let alone a live-in.

  10. #20
    Quote Originally Posted by Clipper View Post
    Eric,

    I read elsewhere that you are T6. If I were you, maximizing my independence would be of primary importance. There's no reason why someone with your level of injury would need a caregiver, let alone a live-in.
    A gentle reminder that there are really no 'shoulds'. Every person's capabilities are personal to themselves and their particular physical condition. Yes, there are guidelines to what level of independence a T6 should be able to achieve but other factors like age, general health, other physical problems can play a huge role in how independent a person is.
    _____________

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