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Caregiver probs :/ need input please. Thank you

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    #16
    Originally posted by lynnifer View Post
    A colostomy is reversible.
    You would never be right again. And most likely have a lot higher chances of awful problems! Definitely don't consider it reversible

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      #17
      Originally posted by JamesMcM View Post
      Wah, that's extreme and most likely permanent! Bowel care is by far the most tormenting worst part of this life for me, but that is one route I will not go! OP if you're willing to tear apart your insides permanently, have a shit bag that's a viable option much quicker and he is right it's MUCH easier on them. And maybe a lighter workload for them would make them more reliable! Just note ( much less extreme perspective/scenario ) I got a suprapubic catheter thinking that it would be easier on the caregivers, truth be told make things better at home, fighting, bitching less (CCAC started coming less and less for ics so blunt of it went on rents),and be less time-consuming on me; now I can't stop getting infections ( sometimes serious kidney ones ), autonomic dysreflexia is uncontrollable undiagnosable, and I can't go back now (trying to figure it out) one thing the bladder shrinkage it caused but also you can't just all of a sudden change the whole workload on them again,it will just cause problems. At first it was great, seemed like I was getting less and less infections just had to drink enough water but eventually it wasn't enough. I understand that you may already have an indwelling catheter and I'm just putting my two cents in about a colostomy which is a much more permanent, invasive, extreme procedure you just really don't knowhow's your body will react to it long term, and there's no going back.
      Holy fucking shit, I couldn?t agree more, except for one thing: shit bags are not easier for any parties involved. Only an ill-informed doctor would suggest this.

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        #18
        I am a little confused. Are you paying them or is the state (through a waiver program)? Why are they working 3 hours a day and getting paid for 6? Does your PCA assist with household chores? Why not? I know that the PCA's that we use (though finding ones that want to do more than use their phones is a challenge) are only paid for the hours they actually work. They biggest challenge we have is that the state is only willing to pay $9.04/hr and we do not have access to public transit.

        What I have found to be effective is to use students from the local community college who are enrolled in the nursing program as well as someone who only helps with household stuff (cleaning his cave, his laundry, linens, etc.). The hardest part is transportation. Since we have no transit available, he has to be driven to doc, therapy, etc. That is the time that I schedule his cleaning. While he is gone, cleaning can be done because not only is he not on the way but any fumes from the bleach (what kills germs) are not an issue.

        Ry is an incomplete C-2 with TBI. While we encourage doing for himself, sometimes there are consequences.--eak
        Elizabeth A. Kephart, PHR
        mom/caregiver to Ryan-age 21
        Incomplete C-2 with TBI since 3/09

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