[SambaBev]

I'm new to the site, although my son has done quite a lot of reading here.

My son sustained c5,c6,and c7 injuries in a car accident in 2009. He was not expected to survive the lifeflight ride, and when he did, doctors told us that night that he would be paralyzed from the neck down. Fortunately, they were wrong. He has use of his left arm and most of his hand, which enables him to use a laptop, a cellphone, bed controls, and the nurse call light button.

He has gone through a lot of trauma since the injury. He was in ICU at the hosp he was lifeflighted to for 20 days, then transferred to an LTACH unit nearby, which turned out to be a terrible mistake. They were supposed to wean him from the ventilator there, however, their idea of "weaning" was like marine recon training. It was a sheer endurance test, taking him to the brink of suffocation, and refusing to put him back on the ventilator "just because he wanted to". The fact that he had severe asthma and damaged a lung in the accident was not considered. {We found out since he has been in the nursing home that the "good lung" has a paralyzed diaphragm..rendering it mostly useless!} He nearly died several times there, due to the ignorance of the staff and doctors. And because there were no ventilator capable nursing/rehab facilities, their case managers tried to have him transferred to Ohio, NY State, or Louisiana! Had it not been for the tireless efforts my sister made on his behalf, I truly believe he'd be dead now. She contacted a man who had a high rate of success in weaning long term vent patients off the ventilator, and he agreed to take my son to one of his facilities to wean him. The process there was completely different. He was not forced to fight for air, when his body tired, he could ask to be put back on the vent. He built up strength in his lungs gradually, and within a month was off the vent completely! Although he has to use a bipap at night because of sleep apnea, and to reduce the buildup of co2, he is doing very well in that area.

He has been placed in a nursing home facility within easy distance of our family. He wants to come home, but at this time, we live in a mobile home that would not accommodate his needs, and I am unable to financially swing purchasing a home. I also work full time, have multiple health problems, and my husband is also disabled. I would love nothing more than to care for my son at home, but right now it is not feasible. Our biggest struggle is that the nursing home expects him to behave as if he were 90 years old, never open his mouth, and above all, not be knowledgable about his condition. He has repeatedly asked for a change of pain meds, due to the fact that he's receiving acetaminophen with each dose of hydrocodone, which will destroy his liver, but the doctor refuses to change it. The home is severely understaffed, and fail to change him and move him as often as he needs it to prevent pain. The admin staff consist of people who either do not know what is involved to properly care for someone in his condition, or have realized that it's cutting into their bottom line to take care of him, and want him out. I have never seen people with less compassion. I really feel sorry for those patients who don't have anyone looking out for them....as my son says...this is a place where people come to DIE, not LIVE.

He also suffers from depression and extreme anxiety. Contributing to this is the fact that his fiance died 4 months ago yesterday, and he misses her terribly.....and feels like his chance for love is over. I know that somewhere, someone would love to have a handsome, intelligent, witty guy who just happens to be a quadriplegic, but he thinks he has nothing to offer anyone now.

My family and I visit regularly, and try to provide for every want and need, but quite frankly, we don't have all the answers, and don't know how to deal with all these issues effectively. Because he was deemed "most likely unable to live outside a nursing home environment" by one of the most reknowned Spinal Cord Injury rehab facilities, not only once, but three times (bottom line, he's a medicaid patient, no money there), we did not get access to the vital info we need to find out how to adapt to his needs. We need a wheelchair accessible vehicle (we cannot lift him in and out, takes about 5 people the one time we did it at the nursing home), a larger home that he can at least comfortably do day visits to, if not live there full time, and info on how he can be more independent, as well as what assistance may be available to someone in his particular circumstances. I guess we need KNOWLEDGE more than anything else right now. I don't want to let him down, but I am worn down...

[mcwriter]

Good to meet you. Does your son have a profile on here? If not, have him fill it out or do it for him. Just get him on here so he has someone in-the-know to communicate with.

Meanwhile, be patient for the members on here to find you to offer advice about what to do and where to get help.

Don't give up, hang in there. This is a good place to be.

[LovingSister]

I am totally new to all this myself. I don't have any answers so all I can tell you is what we have been up against. I took my (step) brother in because our parents are too old to care for him. We live in a mobile home and had to have some renovations done. We had the bedroom door widened and made a wide entrance between the bedroom and the bathroom. Just made a big cut out between the bedroom and adjoining bathroom and finished it off, making it look nice. We put in a pedestal sink in the corner, removed the toilet (bathroom is tiny) and put in a shower. We put special hinges on the front door to make the opening wider. We purchased lumber and a friend put in a ramp. None of this was free and we are paying back the person (out of the monthly SSI check) who loaned us the cash to do it all. The renovations were 4000.00 and the ramp was 800.00 total. Now I know churches will do the ramp if you belong to a church, we don't. I know not everyone can care for their loved ones and it would be unfair to say that anyone can do this. It is hard and truly not for everyone. I don't work and that is one of the reasons I offered to take care of my brother. On the other hand with just Medicaid like we have it is also almost impossible to find a place that will care for your family member like you would. I was also shocked to see that no one donated a dime to help with a thing and this includes our immediate family and they all have a lot more money then we do.
As far as your son's medical problems I have no info as I am still learning things myself. What I have realized is that you have to fight and argue to get what he needs. At least that has been my experience and it has paid off big time. We actually got my brother back in rehab for another month.
I wish I could help you but I know there are people on this site with a lot of knowledge who can maybe be a help to you.

[SambaBev]

Thanks to both of you for the quick replies. I just REALLY want to do all I can to give his life some quality. Any info or encouragement is appreciated!

[crashcarson]

Bless your heart. Another momma having to endure the heartache of her baby being injured. Will be praying for both of you.

Well, start by anon reporting the nursing home to the office of long term care in GA. Every state has them. This is the "powers that be" in overseeing how the homes are run/staffed/etc... Hopefully they will identify and correct the things that are lacking there. And short staffed is not a good reason to leave your son not being turned. He is at great risk for bed sores if not properly positioned on a regular basis. And yes, sadly it is what I call warehousing those who are in the end stages of life. So I can imagine how a young man would stick out like a sore thumb. I mean crud, who can he even talk to there on a day to day basis??? That has to stink big time.
Much different from the needs of your son. A young man who is just in a body that won't cooperate. Is it possible to get a computer for him and someone to work with him to adapt it all so he could use it?? He could go to gaming/chat/support sites online and have some fun and fellowship with other people NOT just existing till they die.

Do you have bus/taxi in town?? I can get a special bus to come to the house here and has a lift for the wc and it costs a buck and a half one way. If your town has a bus system they MUST provide a vehicle that will suit his needs----ty disability laws! Also have a wc access taxi in town. So do check into those two things in terms of getting him out of the facility at least for a day trip to the house. And you can get some thick ply wood and railroad ties and build a ramp so that you son can access y0ur current home. Are there any spinal groups there for support?? I have MS as well as MG, at any rate, the MS society has done many things for others. Also call the office that serves the disabled. My state has a really cool organization here!! But will be the office for disability or something similar. Can call any gov office and they can help you locate it. Here, for instance, if you can afford a vehicle such as a minivan, they wil pay to have it made accessable for him. The home should also have a vehicle, ask the soc worker there if they do and how can you make use of it for day outtings.

Also, and don't answer on the forum, this is one of those Qs that you answer and address if necessary in your head. Does your son get social security disability?? If not why not?? Call the SS office in town and find out what they can do to get him a monthlly stipend. This could and should be used to provide for his care at home. So if a larger home would be the solution, well use that to help with some of that cost. Or add on a room, whatever. If he is on that and has medicaid he can have home health group come out to the house. Have someone come and bathe him and change his linens and replace his catheter (if he has one) Help with just about anything you can imagine. PT can come out and evalutate him and his needs and help get things lined out. Something as simple as a lift to make getting him in and out of bed a breeze====they can get that. And, well you get the picture. So explore that avenue.

NOt sure if you are aware but there is a national company that staffs doctors and they come to the house and make house calls on what ever interval your son would need. Wether that be once a week, month, every 3 months, etc. Brings a nurse with each time as well. Labs are all done at the bed/chair side in your home. The doctors are internists which are the docs who cover most of the body as a whole. And not sure if your son has a neuro or other specialists, but that internist would communicate with those specialists and report all visits/labs etc to them. And darned if I can't remember the name, perhaps it will come to me prior to finishing this post. I tell you this as it would be a great blessing to NOT have to trek to the doc for all the issues of life that arise with your son. There are several groups in Georgia, one is house call solutions. So google those and see what you can find. If he were to come home this would be one less thing to contend with and get transport for an all that rot. Not to mention no outtings during cold/flu seasons where the offices are stacked 9 hi coughing and sneezing and feverish exposing him with his very delicate lungs.


See if there are any homes in your area that are run by nuns. YES nuns. LOL don't even have to be catholic to be in one either. Our oldest is a carmelite nun and they run 2 nursing homes and two childrens' homes. However I am not at all sure that there would be any in your area. Will check on it and see.
The reaons I say this, the nuns oversee all things. If there is a problem the pt has only to mention it and it is taken care of ASAP. And the profits all go right back into the homes to keep them up to date and modern in look and quality of care/supplies. So they will and are great places to have quality of life however that looks to the resident. 98 year old who is shuting down, his needs are vastly diff. He is in the end of life phase. he will enjoy spending his last days being treated with respectful loving care.

At any rate, I hope that htis has not overwhelmed you with to much information. I have just recently started/completed many of thees steps, so it is all fresh and not what they tell you about nec.
hugs
crash

This post has been edited by crashcarson: 06 September 2010 - 11:39 PM

[SambaBev]

mcwriter, on 06 September 2010 - 06:30 PM, said:

Good to meet you. Does your son have a profile on here? If not, have him fill it out or do it for him. Just get him on here so he has someone in-the-know to communicate with.

Meanwhile, be patient for the members on here to find you to offer advice about what to do and where to get help.

Don't give up, hang in there. This is a good place to be.

He says his computer prevents him from joining sites due to a firewall, so I will have to check that out for him. Before his accident, he was very rarely on the computer, so it may be that he needs a little assistance. I will see that he gets it.

[mcwriter]

That would be great and it would give him something to keep his mind occupied.

You're doing great.

[tyvin]

Find the number to the state Ombudsman's office call them and tell them your concerns. When you go to the nursing home they are by law required to have the number posted for people to access as well as other numbers that are advocate type things. If you can't find it go to the social worker or the Director of Nursing and ask them and tell them what you just told us. Is his doctor the house doctor or other? It really doesn't matter as his pain management program sounds ridiculous.

You need to let that place know you won't be pushed around. Get to know his rights.

Ask them what his turning schedule is and how they implement it and how they document it. Ask them how they assess for pain and if they are documenting about it. Ask them what are his scheduled activities or ask them where the activity schedule is for the residents. Ask them how there last state inspection fared and that you would like a copy of it; oh and when is the state coming in for the next inspection (they do it once a year).

Is he on the house's internet line/cable? Is it wireless? Does he have his own computer or is it the house's one. Could explain the firewalls except that it seems a little extreme if this site is not accessible.

[sh1wn]

Looks like others have provided some good advice so far, all I can add is get him on the computer, I live far from town and stuff for a younger guy to do and I think I would go crazy with out my computer, it really makes the time go by.
Shawn

[SambaBev]

Crash,

Thanks so much for all the info. You have given me a lot to think about and a lot of options to look into.

1) He is on disability already, and we have had one organization talk to him already about services they might be able to provide. But the first order of business is having a place to bring him home to.

2) We would be unable to build on to the home we are currently living in, because the lot would be too small, and we do not own it, but rent it.

3) We are unable to afford a vehicle to adapt to his needs.

We dream, I guess like most people, of winning the lottery and just having ENOUGH to do what we need to do. My biggest worry is that my health is not good, and if something happens to me, who will be left to take care of him?

I'm a practical person, and I don't see any realistic hopes in sight for a dramatic change in his quality of life. So anything you (or any of you) have learned along the way will be welcome info.

SambaBev

[hooplady]

Have you asked about the getting a "Medicaid waiver"? These programs enable disabled individuals to use Medicaid funds for living independently instead of being in an institution. Here's one site I found for Georgia - see if your son qualifies under one of these programs.

http://www.workworld...d_services_.htm

Nursing homes are not set up for quads - as you have found, they don't want him there any more than he wants to be there. Good luck!

[Kukkie]

SambaBev,
I'm dumbfounded at reading of your probs - living in a DEVELOPED COUNTRY! (See profile of Kukkie). We thot we have probs in RSA - which is fast becoming a 'priority blacks land'. We've found a cosy little nook in the rear of the only frail care centre in town - where help can be called upon if necessary.
Having read all the posts given to you so far - the only advice I can further offer; Jesus is the master of IMPOSSIBILITIES. He will find a way out for you if you ask Him for help through prayer & obedeince to Him!
Much luv & respect,
Kukkie & Lulie