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C5 complete son is coming home and I don't know where to start

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    Hi Muskie,

    He has virtually no finger function but has wrists. We got some samples of gripper caths that supposedly are useable by people with little hand function. But right now he's condom cathed too -- leaking most likely caused by a med to control his blood pressure.

    He was a computer geek before, no upper or lower body strength. He actually has a little bicep bump for the first time ever. He's not overweight, but prone to binge eating -- maybe a family trait or a result of an antidepressant. Not even close to a self transfer.


      Oh, 6'2" 185ish


        Also, be sure to check out independent living centers in Florida for one near you. If possible, meet face to face with any sources to thoroughly discuss their programs and suggestions.

        Many senior assisted living places (not "nursing homes") also allow younger disabled residents. These are apartments with an array of services (like cleaning, meals) , but he would need to set up attendant care through Medicaid. I think the apartments here in Mi run about $500 to $1200 a month depending on income.


          Thank you triumph. Cleaning and meals would be a big help in getting him home I did not look into assisted living very well because those I did google were very expensive -- but I will look further. But that attendant through Medicaid is still a big stumbling block. I picked the wrong time to be underprivileged.


            Wow. I just had to update this -- I was looking for the person who said to contact Centers for Independent Living to say THANK YOU! Although I had called them a while back apparently I had not talked to the right person or asked the right questions and had written that organization off.

            When my son left rehab his case manager convinced us the best possible thing was a nursing home as he would only get an hour every other day of nursing visits, doing the rest until he was more able would kill me (most likely), etc., etc.

            We went to a dozen places and chose one where he P/T had some SCI experience and the place had a good rating and a good "feel", and was close enough so I could go everyday.

            Whereas the P/T as some SCI experience the nursing staff does not. I do his bowel routine. The RN said she was interested in learning and they should know how to do it -- and came in to see. When I began she got flustered and left. Oy.

            Furthermore they put him in this giant wheelchair that he could barely propel and suggested he bring his own. His insurance won't permit an order until he has a discharge date. His chair from rehab was cancelled when he was admitted to the SNF.

            That's when I remembered about the Centers for Independent Living and that they had used equipment for people. I called them. I told them about my son, his wait on the Medicaid Waiver list for home services.

            In less than 24 hours he had a terrific chair and he is in their nursing home transition program!



              Great to hear you have this help. I have heard about the nursing home transition program and am glad to hear you can take advantage of this. I have also found the Independent Living programs in our area to be inconsistent at best, but some report very good experiences. Hang on to the one you have found!

              You are also learning that persistence leads to better outcomes. Always push... always ask to speak with someone higher up... always ask for more....

              Long term, he will probably need a better wheelchair that has been ordered by a very experienced rehab seating clinic that is specifically fitted for him. But glad he at least has something for the interium.


                Try Dept of Children and Family Services

                Does anyone know what Florida Medicaid and Medicare provides regarding home health?

                I know just a little bit...medicare pays nothing unless it is "medically necessary". Baths and eating are activities of daily living and ironically NOT medically necessary. If he needs cathing, has problems with vision where he is unable to give himself insulin shots etc, Medicare will provide some help. My brother lives in the West Palm area and DCF services helped get him on a Medicaid waiver that gave him 4 hours/day with a CNA.

                Hope this helps.


                  Thanks McStargazer.

                  The Medicaid waiver program through DCF waiting period is about 5 - 7 years right now (according to a Medicaid rep). His case manager at the rehab (she was a useless waste of space) told me he could get vital checks and it might be every other day and very temporary.

                  My big fear about being his only caregiver is leaving him, getting in an accident, and him sitting/laying there till he finally calls 911 -- if he didn't drop his phone, the battery wasn't dead, etc. These things could still happen -- but if he has another caregiver coming in everyday, the longest he's going to be left in a twisted heap is until that person shows up.

                  As horrible as the decision was to go to a nursing home -- if this program comes through, and I have no reason to believe it won't -- it'll be a real blessing