Announcement

Collapse
No announcement yet.

Tired of constant search for caregivers

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

  • Tired of constant search for caregivers

    I know a lot of money is flowing into SCI research and that is great. However, I think the issue of providing caregivers for SCI is underfunded. People who have SCI go home from rehab and scramble to find experienced caregivers. You know how hard this is. You go to craigslist and find people and you train them and then they leave for whatever reason. Where can one find dedicated caregivers for SCI, great people who want to stick around? I suggest that a non-profit foundation be formed that will train and certify SCI caregivers and when they "graduate" from training be available to be flown around the country to help out those in serious need. All paid for by non-profit foundation. If I had the time, I would try to do this myself but I am filling in as a caregiver constantly when the caregivers we have call in sick, go on vacation, just can't make it in, their kid is sick, they hurt their back, etc. and I'm not even a trained caregiver. We have interviewed literally hundreds and have hired over 50 in last three years but no one lasts for long - except three that we have had for three years who are very loyal. There must be some agency or something that just specializes in SCI. So far I haven't found it.

  • #2
    What level are you? How much help do you need? Can you be independent?

    Comment


    • #3
      Originally posted by Veganman View Post
      I know a lot of money is flowing into SCI research and that is great. However, I think the issue of providing caregivers for SCI is underfunded. People who have SCI go home from rehab and scramble to find experienced caregivers. You know how hard this is. You go to craigslist and find people and you train them and then they leave for whatever reason. Where can one find dedicated caregivers for SCI, great people who want to stick around? I suggest that a non-profit foundation be formed that will train and certify SCI caregivers and when they "graduate" from training be available to be flown around the country to help out those in serious need. All paid for by non-profit foundation. If I had the time, I would try to do this myself but I am filling in as a caregiver constantly when the caregivers we have call in sick, go on vacation, just can't make it in, their kid is sick, they hurt their back, etc. and I'm not even a trained caregiver. We have interviewed literally hundreds and have hired over 50 in last three years but no one lasts for long - except three that we have had for three years who are very loyal. There must be some agency or something that just specializes in SCI. So far I haven't found it.
      Start it.
      Get involved in politics as if your life depended on it, because it does. -- Justin Dart

      I shall not tolerate ignorance or hate speech on this site.

      Comment


      • #4
        C5/6 incomplete with very limited use of arms and hands, therefore requiring 24/7 care, and caregivers who do intermittent cath and bowel program & CPAP and transfers and shower and feeding and dressing, etc. cuz he sure can't do all this by himself yet.

        Comment


        • #5
          Have you considered tendon transfer hand surgery for increased function? Have you considered a supra-pubic catheter for bladder? Or colostomy for bowels?

          24/7 care sounds a little extreme for your level. Are you working? staying in shape? Going to School? Driving? Manual chair?

          Just some suggestions, good luck with your care. If you work hard you may be able to become more independent if that's your goal.

          Onward and upward.

          Comment


          • #6
            C5-6 needs feeding? Sounds like he missed rehab all together!

            I'm a complete C4-5 and have been feeding myself for 31 years. I know for a fact many experienced care aides look down on a client who is not doing anything for himself. They talk about them all the time. Perhaps that's a reason why the turnover is so great.

            Comment


            • #7
              A non-profit organization with funding for care givers? Lord knows there are enough people in need and a program like that would be a blessing. Doubt if it would ever happen but lets hope so!

              Comment


              • #8
                Please remember that not every one has the same abilities, whatever the official level or completeness of paralysis. Many people have other disabilities or medical problems which prevent your level of acheivment. Can you imagine how your assumptions make them feel? It really annoys me when this happens.

                Comment


                • #9
                  Read carefully. I think veganman is the loved one of someone with sci.

                  Veganman, dn't have much of an answer for you other than to be more decearning in the interview process. Secondly, you may have to review your renumeration policy and work conditions. Good caregivers are worth their weight in gold!

                  Comment


                  • #10
                    Originally posted by Veganman View Post
                    C5/6 incomplete with very limited use of arms and hands, therefore requiring 24/7 care, and caregivers who do intermittent cath and bowel program & CPAP and transfers and shower and feeding and dressing, etc. cuz he sure can't do all this by himself yet.
                    Veganman, Thanks for sharing about your friend who is C5/6 I know Chris Chappell and the stuff he talks about, he knows about and you are right when you say "cuz he sure can't do all this by himself yet" and yet is the key word. Chris knows because he went from needing a care giver to being totally independent. He has helped me with some of the stuff he is talking about and only desires to see people have as much freedom as they possibly can have. Just a word from me, you would be wise to contact Chris Chappell and pick his brain because wouldn't it be great if your friend did not need any caregivers and could be totally independent. Chris may seem a little forward but it is because he knows first hand from his own life.

                    Steve Pisano

                    Comment


                    • #11
                      Originally posted by lilsister View Post
                      Please remember that not every one has the same abilities, whatever the official level or completeness of paralysis. Many people have other disabilities or medical problems which prevent your level of acheivment. Can you imagine how your assumptions make them feel? It really annoys me when this happens.
                      come on sis. Maybe the person in question bypassed rehab and was never shown splints. I've met several 65+ quads in the last year with C5-6 arm and hand function who were not sent to rehab and were being fed by care staff.

                      Maybe our assumptions make them feel like they can do more. Don't get annoyed, try to help.

                      Comment


                      • #12
                        I am not comfortable with some of the "tough love" approaches espoused by some, since not everyone responds the same. Everyone is different with different capabilities. Many SCI also have had a TBI. Many have further loss of arm movement from other injuries sustained in the original trauma. In other words, I think a kinder, more discerning answer might start with the question, " are there any other compromising conditions besides SCI? " It is great to have encouragement, not disdain for not having achieved the "norm" that others have.
                        Veganman, we have never used outside caregivers so I'm sorry I can't be of much help. Deb

                        Comment


                        • #13
                          I had really good luck finding caregivers on Craig's list, it's just really important to check out people's references and do a thorough interview. 24/7 care, how come? I'm the same level but only get six hours a day, four hours during the day and two hours at night, and I don't think I would need for hours a day if I wasn't on bed rest.
                          C-5/6, 7-9-2000
                          Scottsdale, AZ

                          Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

                          Comment


                          • #14
                            Thank you for all your replies. And I appreciate the feedback, while mixed. I know that no two SCI's are alike and no two C5/C6 are alike. In this case, he broke neck and drowned while surfing three years ago at age 60. Was resuscitated on beach and spent 30 days in UCLA in ICU clinging to life (no P/T or stretching or Range of Motion was done during this 30 days). Went to Craig Hosp. for 3 1/2 mos. Was originally paralyzed completely from neck down and on vent and feeding tube. Weaned off these at Craig. As a result of 30 day stint in ICU he acquired severe - and I mean severe - frozen shoulder - his arms were completely glued to his sides and in terrible pain for about 2 years. This has eased up somewhat after hydroplasty procedures and much P/T and O/T. But he still can't feed himself except chunks of food. Even with splints, can not hold cup yet. Still has significant weakness in arms, and very limited hands. He needs 24/7 basically cuz he does intermittent cath (switched from indwelling foley 8 months or so ago) - but can't do it himself. Believe me if he could he would. He works his ass off trying to get better. He needs CPAP at night cuz lungs not up to par. He needs daily bowel program which he can't possibly do himself at this time. He can't get in or out of his bed or wheelchair by himself. I feel strongly that he will be able to do many things in future but right now that's the situation...

                            Comment


                            • #15
                              Fair enough lilsis. You can't be faulted for having too much compassion.

                              rybread I get the same number of hours. I couldn't handle someone around 24/7.

                              I've used craigslist a few times with mixed results. Networking has been the most effective way for me to find long-term workers.

                              Comment

                              Working...
                              X