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Thread: Need a good pathway home from nursing home -- suggestions on skills needed

  1. #1

    Need a good pathway home from nursing home -- suggestions on skills needed

    Son is in nursing home after 3+ months of hospital/rehab that were in most part lost to management of health issues. He is getting stronger now but I need to get him out of the nursing home, or at least have a plan in place so neither one of us will lose our minds.

    He is on the seemingly never ending Fl Medicaid waiver wait list. He will have to do with very little help and he will be his own primary caregiver, with me as his spotter. I have a herniated disk already. He will have an emergency call system, nanny-cams so I can see him on my iphone when I am not there, fire/security alarm, and a generator if it all shuts down. I plan to stay with him overnight for the first week or so to make sure he's okay -- but cannot live in.

    We are trying to plan on what skills he needs. We are getting some feedback from the P/T at the nursing home but I am hoping you guys will give me a reality check, this list, although these things are very difficult seems very short:

    Short-term goals (getting home):

    • Self transfers - including bed to chair, chair to car, and shower chair.
    • Self cathing - got approved by insurance for the gripper type. He has no fingers but can use these, needs practice but he's getting it.

    Longer-term:

    • Bowel bowel routine - I am doing this now. Looking at the cuff digi stimulator. If something happens to me he needs to be able to do this. Surgery would be a consideration down the road.

    Plan is as soon as he can transfer from/to car for him to come home and do reality checks around his house (and spend some time out!) and fix/rearrange things that don't work.

  2. #2
    There are a number of manuals from various rehabilitation hospitals available on the internet. Here is just one of them.
    https://docs.google.com/viewer?a=v&q...w_Yg_HXT8qcElA

    Essential for independence are:
    • Dressing
    • Bathing
    • Toileting
    • Grooming and Hygiene
    • Preparing food and eating/access to water

    These types of manuals will give you ideas on how to deal with these activities.

    If you skip some of the member quarrels, this thread may give you some ideas. You may find more threads by searching the site for something like "Quad living independently" "Activities of Daily Living for a quad" etc.
    http://sci.rutgers.edu/forum/showthread.php?t=103111

    The big question is once your son has mastered these skills to allow him to live independently, how will he occupy his time?

    All the best,
    GJ

  3. #3
    Thanks gjnl!

    I gave my son that document and we are both going over it together tomorrow.

    Your last question is a doozy. I have been worried about that long before the paralysis. He had moved out on his own for the first time just this year (with some forceful encouragement), he's got agoraphobia and anxiety (in treatment for both), but seems to be dealing with these better since the paralysis, maybe because he has had no choice but to be out and among people. He is looking into going back to school -- even if it's just on line for the time being.

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    What level is he? Does he have triceps?
    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.

  5. #5
    Hi Sue P.,

    He is C5 with wrists and a little wiggle in his left big toe (oh, how I love that left big toe). No triceps before the paralysis, uneven triceps now -- none on one side a little on the other.

    He did do 2 transfers on his own in P/T yesterday. Yay!

  6. #6
    Is leaving Florida an option? With some home health services it sounds like he could live on his own. Many states, including Colorado, have no waitlists for Medicaid waivers for people with physical disabilities. I would NEVER allow nanny-cams in my home, but everyone has a level of risk they are comfortable with. The big toe wiggle is great, but it is better to keep your focus on what function you have today (sounds like how you have approached it) than focus on what function may or may not return.

    Why is mom asking the questions and not your son?

  7. #7
    Super Moderator Sue Pendleton's Avatar
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    Not sure what you meant about no triceps before the paralysis. Anyhoo, a C5 transfer to the shower chair is the roughest. I'm a C6/7 incomplete and have quadriceps so I slide forward to the edge of the bed and then my husband helps me do the 90 degree turn. I do need a pair of slip on shoes for this or I'd slide on the carpet when I go to stand. Going back we have to use a ceiling tract lift. I'm too slippery and the king size bed is too high. I have seen youtube videos of a guy who is a..C5/6 I think who manages on his own using a hospital bed and a lift. Search youtube for Disabled American Veterans videos. They literally collect hundreds.
    I know those charts they have in rehab show ridiculously low goals for most levels but we really are so different. I can do car transfers as long as the seat isn't too low but chair to bed would rip my shoulders up. As far as bladder care using CIC I knew the guy who they made the first headless video of using dysom as a gripping tool. He was a C5. But bowel, he'll need good trunk balance even with the two tools because a belt at his chest would prevent him from reaching where he needs to reach. Is he covered by a father or ex-husbands social security? Medicare will normally allow a few trips a week for bowel care especially if he also needs foleys or supra pubic cath changes. Do you have paratransit available and has he digned up for it? He wouldn't need to do car transfers right up front if he has transportation to therapy and doctors.
    And do get a back brace like weight lifters use to protect your back as you help the first year or so.
    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
    And do get a back brace like weight lifters use to protect your back as you help the first year or so.
    Sue, hate to tell you this, but those types of back braces have been shown to NOT decrease caregiver back injuries, and in fact my INCREASE risks for injury due to making the caregiver over-confident about what amount of weight they can safely lift. A mechanical lift is much better for preventing caregiver back injuries.

    (KLD)

  9. #9
    Hi CC, Sue, and SCI RN,

    Thanks for your input. Leaving Fla is not a possibility at this point -- and he has very affordable housing here that could not easily be replicated.

    About my no triceps before paralysis comment -- he did not have much strength prior, he was sort of a couch potato.

    We went to a nearby botanical garden yesterday as some kind of escape from nursing home. Transferring into/out of the car (a Subaru Baja -- the door opens 2" further than my Prius) was tough on all of us. Last transfer out was a bit better. But when I came home I found and started filling out forms for para transit. If it were just me and him (his dad was along) I don't think we'd do the car transfer alone again very soon.

    Speaking of those back braces -- I bought one after one of the techs at SCI rehab told me he wears one. Yeah -- I donated it to the thrift. My back was already messed up but wearing it actually caused a totally different problem to flare up and am going to the MD this afternoon.

    I will be much happier when he can get home and get to some quality outpatient rehabilitation. Fortunately we applied to the nursing home transfer program and he was accepted -- they warned us there will be lots of bureaucrats, forms, and interviews, but it's giving us hope. I met with them, they interviewed him in the nursing home Friday, and then did a walk through his house. If they can come through with some home care it'll be a very happy new year indeed.

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