3 replies to this topic

[BigSis_K]

(If this has been covered already, I apologize)

My brother was injured in a car accident 3 weeks ago and is still in ICU due to secondary infections (pneumonia, some other respiratory issue, and now MRSA and ICU psychosis....will this ever end & will he ever get to Rehab...anyway...)

The rest of my family is largely "ignoring" (for maintenance of their own sanity right now, I guess) the full magnitude of my brother's "condition" (no one can even utter the "p" word yet).

I'm trying to help get things in place for my mother (who will likely be his main caregiver & with whom I assume he will be residing). I can't find any info in NJ regarding the program noted in another thread about a federal program that should exist in all states for individuals with SCI (to help with needed housing mods., equipment & care). My family will need some assistance with making the home accessible for my brother (currently C7 complete, but who knows as he never seems to be getting the hell out of the hospital).

anyone from NJ that can point me in the direction of ANY assistance for things like adding ramps, widening doorways, replacing the bathtub with a stall shower etc....The home is fairly open (thank goodness) but it will not be accessible with at least the aforementioned accommodations.

We will also likely need a hired caregiver for some hours as all of us work FT and need to.

I will begin calling any identifiable advocacy group & the state DHS, but I'd love to have a map, rather than travel blind. It is hard enough being the only family member willing to research & think ahead. My dad doesn't seem to understand that when my brother comes home, his "condition" will amount to MUCH more that just "being in a chair". Unfortunately, I've looked ahead (in these forums & elsewhere on the web) and want to be ready with the resources once everyone else realizes what is needed (and hopefully before).

Thank you.

[wheeliebear75]

Well step back & calm down.....your shoulders aren't wide enough to shoulder the entire responsibility all on your own.

The higher up the person's injury the more complications come along with. I know it must seem like it's taking forever but really it's not out of the norm to have these set backs for the 1st few weeks....I know this 3 weeks has felt like 3 years but they've really just been 3 wks of Hell for him & all of you who care about him.

Many but not all people are able to use a traditional tub/shower combo using a shower hose & a bath-bench. Getting INTO the bathroom is the trickiest part & that will depend on how wide the doorway is, how large his chair is, & how much assistance he'll need (a person or hoyer lift each take up extra room).

If the hospital where he is at has any social workers you could take a proactive approach by going to THEM with "I want to get the ball rolling on cutting the red tape away & getting things set up so my brother can come home.". They SHOULD know what services are available in your immediate area & what programs/services your brother will qualify for.

If you find them saying "Well nothing like that exists", call them on their BS & keep knocking....the squeaky wheel is the one that gets the oil.

[BigSis_K]

Thank you Wheeliebear75, I hope to get with the Social worker at the hossie, but need to approach her without my mom, because Mom's just not quite "there" yet. I am a social service worker, so I know how to be tenacious, I was just looking for clarity as to what is available & how to access services. (Sometimes there are certain "magic" words that have to be said to just the right person in order to access PUBLICLY funded programs - total suck, but true).

[wheeliebear75]

Yes....tell them under NO CIRCUMSTANCES do you want him placed in any "care facilities" for anything BUT his rehab! That once that portion of the recovery process is over you ALL want him to be "In the community"! If they try pushing you into having him in a home; tell them that you know his mental health is also important & key to that is having the RIGHT in making choices like everyone else does including but not limited to when,what, & where you eat & with whom you eat with. Try getting together a pizza/poker night with the guys at a nursing home. What you guys need is help getting YOUR HOME ready for HIM....NOT stuffing him into an old folks' home where he'll most likely be less than 1/2 the age of most of the other residents! "HE is still young with a life full of possibilities, he just needs help getting on with that full life!"