Announcement

Collapse
No announcement yet.

having trouble with caregiving in florida

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    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.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

    Comment


    • #17
      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.

      Comment


      • #18
        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...

        Comment


        • #19
          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.

          Comment


          • #20
            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.
            _____________

            Comment


            • #21
              Yea I understand that many people my level are more independent than I am and thats the reason i moved and bought my house to goto too step it up recovery and to become more independent. the problem is right now im just not that capable. like if i fell on the floor there would be no way for me to get back to my chair or bed, it has happened before. if i could stand up just momentarily things would be different. As it stands right now i need help, at the very least for peace of mind. I suffer from anxiety attacks so that is also something that affects my comfortability..

              Comment


              • #22
                Originally posted by marmalady View Post
                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.
                I'm well aware that everyone's capabilities are personal, as I have been paralyzed for more than 20 years and have seen my own capabilities change dramatically during that time. My intent was to encourage Eric to strive toward greater independence as this would address many of the caregiver problems he now faces. It pains me to see someone struggle, and I like to offer possible solutions. I wasn't judging him, and I don't need a lecture.

                Comment


                • #23
                  Originally posted by Eric.S View Post
                  Yea I understand that many people my level are more independent than I am and thats the reason i moved and bought my house to goto too step it up recovery and to become more independent. the problem is right now im just not that capable. like if i fell on the floor there would be no way for me to get back to my chair or bed, it has happened before. if i could stand up just momentarily things would be different. As it stands right now i need help, at the very least for peace of mind. I suffer from anxiety attacks so that is also something that affects my comfortability..
                  I'm screwed if I fall out of my chair, too, so I keep a cell phone on me at all times. I also make damn sure I don't fall out of my chair!

                  My suggestion to you is to make a list of all the things for which you need assistance and work on those things, one by one, to be able to accomplish them yourself. That way, you can get help for those things that remain problematic (like transfers). Regarding peace of mind, you're gonna have to find ways to lessen your anxiety. You're restricting your progress by worrying so much about "what might happen." Small steps = big rewards.

                  Comment


                  • #24
                    Originally posted by Clipper View Post
                    I'm well aware that everyone's capabilities are personal, as I have been paralyzed for more than 20 years and have seen my own capabilities change dramatically during that time. My intent was to encourage Eric to strive toward greater independence as this would address many of the caregiver problems he now faces. It pains me to see someone struggle, and I like to offer possible solutions. I wasn't judging him, and I don't need a lecture.
                    Not a lecture, but a gentle reminder. That said, this is where peers learn from each other. Eric.S may need a little prodding to set the bar a little higher.

                    Lifeline is another safety measure. A pendant that you wear around your neck in case you fall on the floor. A press of the button calls five preset phone numbers of people you've designated as your fall rescuers. After a year, set a goal of ditching it if you haven't used it.

                    Comment


                    • #25
                      Originally posted by Clipper View Post
                      Regarding peace of mind, you're gonna have to find ways to lessen your anxiety. You're restricting your progress by worrying so much about "what might happen."
                      Holy cow! That is harsh. Don't you understand that anxiety is a disease? Telling Eric to find ways to lessen anxiety is like telling him to find ways to overcome his inability to function below his injury level.

                      Comment


                      • #26
                        Originally posted by SoFla View Post
                        Holy cow! That is harsh. Don't you understand that anxiety is a disease? Telling Eric to find ways to lessen anxiety is like telling him to find ways to overcome his inability to function below his injury level.
                        Why is it harsh to suggest that someone needs to find ways to lessen their anxiety so they can live a functional life? It would be harsh to tell someone to "deal with it" or "get over it." I did neither because I understand, through personal experience, how disabling anxiety can be. There are may ways to lessen anxiety: build a support network of people who can assist you as needed, wear a "lifeline" pendant so help can be summoned in emergencies, notify emergency responders to give you peace of mind that someone is available in emergencies, focus on small accomplishments to build confidence, etc.

                        Comment

                        Working...
                        X