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Thread: Independent living after SCI

  1. #1

    Independent living after SCI

    I am a live in caregiver for a 66 year old man who suffered a complete SCI L1 level four months ago.

    The patient was discharged from rehab two and a half weeks ago. Since then I have been hired and paid privately $600 per week plus room and board. I am certified as an HHA (and CNA) in New York State. I happen to have known the family personally long before all this happened and I'm enjoying being able to help.

    The man lives with his wife who works full time.

    He is 5'11", 240 pounds, never exercised in his life. He has a pacemaker and I suspect suffered a heart attack at some point in the past. Otherwise he's healthy.

    As you can imagine, changing clothes, showering, emptying the catheter bag, assisting with digital extractions, doing laundry, etc does involve some work at this point. Transfers with the sliding board are a backbreaking adventure. I'll be driving him to medical appointments in a van with a wheelchair lift which he will borrow from a friend. Also I just "baby sit": hanging around when no one else is here to make sure he's OK.

    He is working seriously on OT and PT, however this is not a sceneario where you have college athlete who was in top shape prior to the SCI and has low fat and bulked up muscles. Just the opposite. But he's trying.

    Anyway, here's my question:

    How long will a man like this probably require a full time aide? Could he manage in a few months with an aide visiting a few hours a day?

    I'm personally curious what time frame I should expect. Is a live in aide just a stepping stone for a few months until he's ready to be semi-independent? Or is it going to be a probably a long term situation?
    Last edited by liveinaide; 06-16-2014 at 12:59 PM.

  2. #2
    Most people at his level of SCI do not need a caregiver at all, must less one 24/7 or live-in. Even our clients with tetraplegia often get 4 hours of caregiver services daily only: often 2.5 in the AM and 1.5 in the evening. They group the care they need (transfers, ROM, bathing, bowel care, etc.) so that they can get what needs to be done with assistance during that time; then they are often alone for the rest of the day. He should be able to fix his own lunch, do laundry, use a computer, watch TV, and even drive himself with hand controls (once he masters car transfers, which should have been covered in rehab).

    If he is not able to do most of the effort of his slide board transfers, then perhaps a mobile or ceiling track lift should be considered to make things easier for caregivers.

    Regardless, HE needs to make the decision to be more independent, take control of his life, and learn to do these these for himself. You, as the attendant, cannot make that determination.


  3. #3
    Senior Member pfcs49's Avatar
    Join Date
    Aug 2013
    NW NJ ***********T12 cmplt since 95
    Perhaps if you published your near address, someone, nearby, from this site would be willing to mentor him a bit. I'm 67yoa, T12/L1 and in NW NJ and would be happy to help.
    I don't think there is a more effective teacher than someone in your own situation who has developed a satisfying life, showing you how they did it.

  4. #4
    I would say that the main problem this man has are transfers. He has a slide board, however at his current level of physical fitness he would either go nowhere or land on the floor if he attempted to use it himself. He has a Hoyer lift however of course a second person must operate that. As I understand it, the same is true of a ceiling lift. So if no aide is present, he is glued to whatever he is sitting on.

    On the other hand, perhaps all needed transfers could be limited to a couple of hours in the morning and evening. All night he'll stay in bed, all day in the wheelchair.

    By the way, his home is not currently handicapped accessible. He needs assistance getting from one part of the house to the other as well as going from house to the yard. Significant modifications could fix this however.

    So at this time, being with no aide all day would limit him to remaining in one part of the house in his wheelchair all day and if something is out of reach (fell on the floor for example) he would just have to wait until evening.

    So in any case, you're saying that a full time aide for this patient is even now a luxury not a necessity?

    And pfcs49, thanks for the offer. We are near Spring Valley, NY.

    Just by the way, at least in our area, I don't know if you can get an aide for a shorter than four hour time slot, and he certainly needs assistance in morning (about 3 hours) and evening (about 1 hour).
    Last edited by liveinaide; 06-16-2014 at 02:03 PM.

  5. #5
    Senior Member
    Join Date
    Oct 2012
    Just outside of Philly
    I broke my back T12/L1 and never once considered a caregiver. I was younger when I was injured but honestly I have never heard of a paraplegic needing that level of care.

  6. #6
    At least as far as transfers go, this person is helpless. Even with an aide it's a major headache, or backache.

    Also dressing: at this point in time, I cannot image this man changing by himself from pajamas into street clothing, or the opposite, including a diaper change! Even with an aide it's a big struggle. He can barely lift himself.

  7. #7
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    Has his physiatrist suggested he see a nutritionist and possibly prescribe outpatient PT or a home program to bulk up and thin down? Even if a cure comes a long next month he could fall over from a heart attack at the good news if he is that out of condition. I mean 66 is not considered old these days.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  8. #8
    Why does he wear diapers? This should not be needed if he is on a decent bowel care and bladder care program. It is bad for his skin.

    Has he considered sleeping nude? Most of my clients do this. Pajamas are a PITA to put on and take off, and create wrinkles that can cause skin problems as well. Dressing can be included with his AM and PM PCA time as I mentioned above if needed.

    What is he doing to try to loose weight and improve his strength and endurance?

    Does he have a reacher he can use to pick stuff up off the floor??

    Curious about what he did learn and achieve in his level, at the very least, independent transfers should have been achieved in 8 weeks of acute inpatient rehabilitation.

    Are they making plans to modify the home, or move to a different home that is more accessible? Money being spent on live-in 24/7 PCA care could be much better spent on those efforts.


  9. #9
    I'm 53 and my doctor says that 50 is the new 30. But that's me - I am in top shape for my age. (Now if I could just convince more 30 something ladies of that scientific fact....)

    So 66 is not necessarily old, however if you've been a couch potato all those years, 66 years can really take a toll. He already has a pacemaker. Based on a chest scar I'm betting he's had bypass surgery too.

    His wife (who is his age but is quite slim and for her age athletic) is giving him very healthy, low calorie meals. So that will help. And she's pushing exercise.

    So in a sense he has several disabilities: complete L1 SCI, lots of extra body fat, muscles atrophied from years of neglect. Those last two can change but not overnight. And only if he really wants to.

  10. #10
    Actually, he sleeps with a hospital gown on but it's still a huge effort.

    His diaper is often clean, although sometimes there is a brown feces stain. Also recently his foley catheter has been leaking. The solution is probably to go to self cathertization, however I believe that he personally is afraid of that.

    For his home to be fully accessible, it would probably mean some big bucks. I don't know how their finances look. They may also be seriously expecting a miraculous recovery in the near future, make the investment a waste.

    It's a good question what he learned in rehab. As far as I can see it seems, after two months, to have amounted to digital extraction and getting used to having someone drag him across a sliding board.

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