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Thread: Tired of constant search for caregivers

  1. #11
    Senior Member Van Quad's Avatar
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    Quote 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.

  2. #12
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    Red face

    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

  3. #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.

  4. #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...

  5. #15
    Senior Member Van Quad's Avatar
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    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.

  6. #16
    Oh, I forgot to mention that this is a guy who lives alone and has no family to help him. Perhaps if he had family to help him he would not need so many caregivers. Everybody's situation is different....

  7. #17
    Senior Member Van Quad's Avatar
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    Quote Originally Posted by Veganman View Post
    Oh, I forgot to mention that this is a guy who lives alone and has no family to help him. Perhaps if he had family to help him he would not need so many caregivers. Everybody's situation is different....
    with all due compassion, my family has been on the East Coast for the entire duration of my SCI. I'm on the left coast. I've managed exclusively with hired caregivers. And I've had a wonderful life with one care worker still with me for 18 years, couple of others 8 to 10 years.

    Is this fellow easy to get along with? The question has to be posed because of the number of staff he has gone through.

  8. #18
    Senior Member zillazangel's Avatar
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    Veganman, I am soooooo with you on your wishes. In our experience, a PCA lasts right about 3 months before s/he starts slacking off, no matter how great they are at the start. And this refers to only 15-20 hr/week caregivers that we hire now. When Chad lived alone with no family, the turnover was enormous. And I assure you, Chad is a stellar guy and very easy to get along with - van quad, you are a true exception if that has been your experience.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  9. #19
    Veganman is easy to get along with most of the time but he gets really pissed off when a caregiver drops him on the floor, breaks his wheelchair, yanks on his sore arms, etc. He does have three devoted cargivers - two have been with him for whole time since he got home from rehab 2 1/2 yrs. ago. It's the weekends that have been very difficult to fill. One of his wonderful caregivers is going back to her home country for a month which has put us in scramble mode and prompted my original post of this subject. The biggest problem is finding a caregiver who can master the bowel program.

  10. #20
    Colostomy = no more bowel problems, ever. No need for caregiver for this job. Maybe consider it.

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