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Independence? C-5 Incomplete – 6 mos Post

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    Independence? C-5 Incomplete – 6 mos Post

    My son is a 33 y. o. C-5 incomplete, 6 mos post (Sept '06).
    What are the probabilities of him being able to be independent, & to what degree?

    At this point in time, he cannot intermittent cath
    (he's considering a suprapubic !?)

    or do any bp by himself. (Not enough wrist, hand or tenodesis function - we're hoping for more recovery, but that doesn't seem to be happening much. But there are many things he can do and has learned to do, but BC/BS, his med. ins. co., says he's 'plateaued', & won't authorize any more inpatient therapy. He does get some outpatient OT & PT, though)
    He's been constantly plagued with UTI's since the beginning, when in the Shock Trauma unit @ about week 3 or 4, post - still on the vent. He was discharged from the rehab, off the vent, with an un UTI (in Dec. just before Xmas), & has had to go to the ER - 2 times for intense inpatient IV antibiotics (he's currently in an assisted facility with epididmitis, severe swelling- & a PICC line for intensive I.V. antibiotic therapy, for the next coupla wks).

    He has had a family member be his caregiver, and seems to need constant care, having many needs attended to - on a very frequent basis.
    Caring for him, at this point, is a 24/7 job, with scheduled needs, & minute-to-minute needs, cropping up frequently while he's awake- as well as his every 2 hour turning & every 4 hour med schedule when asleep.

    He doesn't seem to have a 'comfort zone'. He always seems to be in discomfort of some sort & we're frustrated, not seeming to be able to make him more comfortable.

    He doesn't seem to be able to really grasp his situation and puts himself at risk doing
    seemingly 'minor' things that can have complications
    (and sometimes have - AD, infection situations, accidents, etc).
    He doesn't seem to think there's anything wrong with him, except that
    he's 'just paralyzed'.

    Other than that he thinks he's 'just fine', & is very stubborn about it.
    He's determined to be independent, but isn't able to function well enough to be so.
    He's not careful, he's even reckless – medically & physically.
    We have to be his watchful, ever vigilant, guardians of his health, and well being.
    He doesn't seem to want to be bothered with that aspect
    (and seems rely on us, to do so).

    He's just a 'damned the torpedoes....full speed ahead' ....person.
    What does his future hold (I know none of us are 'fortune tellers')?

    But what can we realistically look forward to ?
    We know he doesn't want to be.....but
    will he (being a C-5)-
    have to be constantly cared & attended to?
    Bob B
    SCI - Parent

    At C5 unless he has triceps, it is unlikely that he would be able to be totally independent in all of his care, including dressing lowers, bowel and bladder care, and transfers.

    Regardless, he should be organizing his care to get it so that it is very efficient, and can be done by another person in less than 6 hours daily. Most of my clients at this level of injury who have PCAs helping with their care, and who live alone, get 4-6 hours of PCA care daily. They usually have 2-4 hours in the AM for bowel care, skin inspection, ROM, bathing, dressing, transfers and breakfast, and the PCA fixes them either a sack lunch or something they can microwave themselves for lunch and dinner. They then have someone else who comes in the evening to put them to bed, get undressed, skin inspection and ROM (which could also be in the AM).

    We practice this organization, as well as directing a PCA while the person is in the hospital still in rehab, so that they have these time management and PCA management skills before discharge.

    The rest of the time they are up in their chair, independent, with no one to help them with anything. Of course having a computer helps, and an ECU is a real plus as are door openers and access to paratransit, or even driving (expensive for someone at C5).

    At night many use a turning mattress so they don't need someone to turn them at night.

    Of course he has to be motivated to do this, and if family is already programmed to be at his beck and call 24/7, he has little incentive to change.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      I agree with LKD, he won't be completely independent, but more so than he sounds like now. As has been said several times here, practice tough love. He is fairly new to this and will likely gain more skills, but needs to have motivation. Do as a PCA would, get him ready in the morning and down at night, but leave him on his own for a while. He isn't vented, so you don't need to keep him with care 24/7. It will be difficult at first, but if he must do his own care, he will.
      C2/3 quad since February 20, 1985.


        He has more triceps now than he did before, but he cannot really lift/shift his weight unless he can get into a locked elbow situation. Hre can curl 5-10 lbs, but cannot push very well.
        He needs to be cathed every 4-5 hours unless he opts for the suprapubic. We don't know if he will.

        Your response was quite frank, and I appreciate it- but now I am in despair as to a lost 6 months of trying to do the right thing for him, but it seemingly has been quite wrong.

        His situation was, that no one ever did for us, as you say you do- in rehab.

        No one counseled the family in that manner.
        No one counseled him that way.
        He continues to go to rehab at the same hospital he was in for his initial rehab and seems to come back home (he travels with his powered chair on the handicapped-eqipped 'Mobility" public transit, by himself, to and from rehab appts) with little to no increases.
        Its as if he's off to the gym for a workout- then back home to the 'same-ol-same-ol'.
        His environment back home isn't condusive to him becoming independant as it is a temporary set-up with just a hallway, a bedroom and a bathroom on the 1st floor.
        The rest of the family passes by going in & out, but lives on the 2nd & 3rd floors of the townhouse. His sister comes downstairs to tend to his needs.

        He neded a place to come to, that was handicap accessable, and his sister took him in, supposedly temporarily, until he could set up a more permanent place to be.
        She no longer can care for him, & is on the verge of breakdown & collapse.
        He has to make other arrangements but hasn't bothered to until now.
        He'll not be able to be discharged froim the nursing home in 2 weeks,
        back to his sister's. It is not possible for him to come with me.

        It seems you feel we've been all wrong in helping his recovery - and never was counceled in the right direction. He hasn't the skills or independance he should have been motivated to get & we've been programmed to his detriment.
        Maybe if we'd have known.....the family's becoming fragmented.....
        I don't know what will happen, now.
        Last edited by nide44; 12 Mar 2007, 5:34 PM.
        Bob B
        SCI - Parent


          most likely won't be independent but he will be a lot better once you get a lot of those issues resolved. an SP tube will take care of cathing but that too has it's own set of cons that come with the freedoms it allows. drinking more water is a must, A MUST. and i take a low dose of bactrum every night to keep bladder clean and uti free.

          he probably is reckless b/c he is angry with his body and his situation and is taking it out on his body that won't work anymore. i've seen this a lot. 6 mos post is still very early in the adjustment phase. concentrate on finding how to get some periods of comfort. living in constant pain changes a man.


            he can be as independent as he decides to be...i'm very similar injury and flyin solo since 18 mos. post...WHERE HE GOES FROM HERE IS 100% UP TO HIM AND IT DOESN'T MATTER WHAT ANYONE ELSE HAS OR HASN'T DONE..NO TWO OF US ARE THE SAME....all i was told was what i wouldn't be able to do again and how "dependent" others with my injury were, they were all wrong.....


              aarrrggghhhhh!!! X2 post again...whats up with the site tonite?