This is actually a really good point. The more modern “zombies as diseased people” I think probably use the normal nervous system to control their bodies, so I think a SCI would prevent them mobility. More traditional “zombies as magically reanimated undead” seem to be able to continue moving body parts even after they are completely severed off independently from the rest of the body. So if you were zombified by a necromancer you’d probably be ambulatory.
Sami41 I’m back again (like umkay I’m taking some time out from work for this).
There are some things you should probably check whenever you visit your father is in a care facility (if I miss anything I’m sure umkay will fill us in). This applies to hospital, nursing home, respite care, anywhere. Actually, your dad should be able to do some of this on his own behalf, but he isn’t much more experienced at what a quad needs than you are, being so soon after his accident and receiving substandard care. Make sure your dad knows what he needs to to keep him healthy!
**1) Find out how often he’s being moved. ** The easiest way to do this is to ask your father. Can your father talk? Then just ask him. If he can’t talk (he should be able to, but I don’t know what the rest of his situation is) it should still be possible to communicate with him.
Be prepared for shitty staff to claim he’s mistaken, or demented, or hallucinating. Just because he’s a quad doesn’t mean his brain has rotted.
How often do they sit him up? How often do they transfer him into a wheelchair or recliner? He should NOT be flat on his back 24/7, he should NOT be in a bed all the time! If they say he is too sick to sit up or move then he belongs in a hospital not their nursing home.
**2) Find out if staff actually talk TO him. ** This is important. He does, after all, still own his body even if he can’t feel it. No one should just barge in and start doing stuff to him without a word no matter how innocuous the task. If he’s awake and aware it should be “Hi, Mr. SamiFather, I’m here to turn you on to your side.” or “Hi, Mr. SamiFather I’m here to take your vitals.” or “Hi, Mr. SamiFather I’m here for your bowel management program” or “Hi, Mr. SamiFather do you need anything?”
3) Check his urine. Yes, it’s gross on a certain level but since he can’t do it himself someone has to. It should be both pale and clear. If it’s cloudy, dark, or, Og help us, bloody he has a urinary infection which is another big killer of people with SCI. I’m assuming this place has him with a leg bag and if that’s the case it should be easy to check. If there are signs of infection ask about what antibiotic he’s on. If antibiotics aren’t working he should be checked for fungal infections. If it’s dark he’s probably dehydrated. One of the potential horrible things in these situations is the failure to provide adequate hydration (which is also important for healing pressure sores!)
4) What stimulation does he get during the day? A quad is NOT a potted plant, he’s a human being and needs more than a silent, barren room. Lack of stimulation actually can lead to hallucinations because he’s in sensory deprivation. Some places will medicate or declare such a person senile - he’s not, he’s just so utterly cut off from the world his brain gets up to mischief due to lack of input. A TV or radio can do wonders for this problem. Ideally, there should be a set up for him to change channels. Has he been taught to use a mouthstick? If not, that’s another sign of neglect because using one opens up reading on a kindle, watching movies on DVD, and surfing the internet.
Can you get him into a wheelchair on one of your visits and get him outside once in a while, just for a change of view and - oh, yes - some fresh air and sunshine because, you know, quads need vitamin D, too (although as umkay has noted you have to be very cautious about temperature control).
I mean, geez, I used to live down the block from a state-run nursing home in a downtrodden part of Chicago, a low budget warehouse for crippled people, basically, but even they would get their mobility impaired people into chairs and push them out onto the porch where they could watch the street life and talk to each other. They even did this for the one poor guy who was so messed up no one was sure if there was still much of a person inside there but you know, he might be, so he was out there with everyone else, odd spasms and all.
Consider contacting a lawyer. I’m not a fan of frivolous lawsuits, but this isn’t frivolous. This is dangerous neglect. A successful lawsuit could net you the money to keep your father comfortable for the rest of his life. Even if you don’t go to lawsuit, having a lawyer that acts in your father’s interest could get these buttheads off their asses and get them to take care of your dad properly.
Also - they may try to block you, using HIPAA as an excuse. If they do that, you need to obtain power of medical attorney for your dad as, even if he’s mentally capable (which I assume he is) he has severe physical limitations that can impair his ability to act on his own behalf in a situation like this. Even if that’s not the case now, he should have the legal paperwork set up so that if he does become more incapacitated in the future he has someone to legally to act on his behalf, HIPAA be damned.
How is this nursing home being paid for? They might well resist withdrawing him because doing so would represent a loss of income for them, but since they aren’t upholding their end of the bargain you should be able to legally terminate any arrangements made - and if they won’t go for it, well, that’s why you have a lawyer who can threaten them with a lawsuit and elder abuse. What resources do you have?
You say you haven’t the skills and money to take care of him - well, that’s a reason for home health aids. What is your father’s source of income? What programs are there in the area that might help? Yes, taking care of a quad at home is no small task but it CAN be done. Is your home accessible? Is the home of one of your siblings accessible? Does your father’s insurance pay for home health aids? Any church groups that might be able to help out? At the hospital, for after discharge planning, did a social worker talk to him at all about alternatives to a nursing home? To you? To anyone?
You need someone with some expertise to walk you through insurance, Medicare, Medicaid, and all the other agencies by which one obtains care in your state. I’m not entirely sure how to go about that.
Anyhow - good luck with all this. It’s a gruesome thing to have dropped in your lap, it’s not fair to your dad or you or anyone, but life isn’t fair. If you need emotional/moral support you can get that here. And, please, don’t forget to take care of yourself, too. It can become way too easy to wind up sacrificing all on the part of the disabled loved one and start to neglect yourself, but if you don’t take care of yourself you can’t take care of anyone else.
We went to Oahu as a family several years ago to celebrate my parents’ 35th wedding anniversary. We stayed on Oahu the whole time, since Oahu is pretty accessible and inter-island travel was not a headache we wanted to add to the already mind-numbingly long list of things we had to get in order to make the trip comfortable/accessible for me (seriously, this took months to set up).
We spent a lot of time on the beach. We rented a beach wheelchair for me while I was there, as opposed to bringing mine, and I spent a lot of time in that thing. Of course, I had to be careful of overheating. But as I said, I’m more likely to freeze than overheat, and we were careful. I loved loved loved going in the water. My brothers are all strong swimmers and they’d take me out for a swim several times a day.
Other than that, we did the normal touristy things: US Arizona memorial, Polynesian Cultural Center, and even a helicopter tour of the island, which was one of my favorite parts.
*USS Arizona
This is why I love this place :D.
So true. But, if he’s been on his back for too long, the sitting up thing will have to come gradually. I nearly passed out the first time I was sat up, 2 months after my accident, and I was probably only at about a 45 degree angle for a minute. Lying down long-term does weird things to the way your body handles blood pressure. DO work on getting him up and in a chair, but also DO take your time with this.
Nobody touches me without my consent, and the same should go for your dad. Being elderly and disabled doesn’t take away his right to manage his own care.
How is he cathed right now? Is he cathed at all? Or are they (maude forbid) just using diapers? He should NOT be using diapers if he has a pressure sore on his tailbone! Urine and fecal matter on skin accelerate and complicate skin breakdown. I know this might be an uncomfortable thing for you to know or think about, but high quads need someone to help look after their bodies. You may be It.
Second the mouthstick, if he doesn’t have good wrist/elbow function. It’s inexpensive, pretty foolproof, and doesn’t need batteries. You can order one online and bring it to him, since I doubt the staff is going to take the initiative. One with an attached stylus could open up a whole new world for him, if he had an iPad or something similar.
YES. YES. YES.
Why didn’t I think of this? Of course, you should do this, if your father is in agreement (it’s his life, after all).
Me neither. 
I realize me and Broomstick, we may have freaked you out. It might seem like too heavy a load for one person. Well, it is. If you have no one to help you, all you can do is all you can do. You do your best, but make sure you take care of yourself. Again, so sorry you’re having to deal with this.
Why didn’t I think of this? Of course, you should do this, if your father is in agreement (it’s his life, after all).
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You’re what, 26? People in their 20’s usually don’t think that way. Heck, people MY age don’t usually think this way! (I’m near 50, btw, if anyone is wondering)
Really, everyone over the age of 18 should have something set up because stuff happens (under 18 it’s automatically your parents).
Yes, dad should be on board and should do the choosing as to which person/friend/relative has that authority. You can also have secondary power of attorney, too. My parents had that set up for my mom. If mom couldn’t act on her own behalf then dad would, and if something happened to dad my oldest surviving sister was next in line. This became REALLY important the time they both wound up unconscious in the ICU.
Don’t feel bad about that - I worked in the health insurance industry for 13 years and I can’t advise him, either. The rules vary too much by state, and insurance policies are all different. Can’t be done over the internet even by an expert, it takes face-to-face consultation with someone fully conversant with the rules and regs in the state where his father is currently located. Definitely an area where you should try to hire an expert.
^ What umkay said.
Umkay - have you ever had an interest in bungee jumping?
I’m really starting to f*cking hate myself here. I’ve been so unbelievably, undeservedly LUCKY in this disability journey. What your dad and Broomstick’s hubby have gone through is just so much harder.
To answer your question, I’ve never had beyond a stage one pressure sore, due to the excellent care I’ve had, not to mention my youth at the time I was injured and my continued health thereafter. It still sucked though. You can’t put any pressure on a pressure sore, so if it’s on your tuchus, like mine was, you gotta go to bed (or a couch) until it heals. A stage one like mine was will heal in a few days. But since I don’t like being out of commission for any length of time, I do whatever I can to avoid them entirely.
The best way to treat a pressure sore is to not get a pressure sore. Seriously, an ounce of prevention is worth 7,234,423,035,543 pounds of cure in this scenario. I don’t F around with pressure relief (because I have that luxury–I know your pops probably doesn’t have the ability to do it himself or direct someone to do it for him). If you want to scare a quad (who has the ability) into doing pressure relief, just start googling “stage 4 pressure sore.”
Here’s a great page with diagrams and instructions for treating all four stages of pressure sores. And here’s a page about how crucial nutrition is for healing them.
Dang, I hope this helps…
Sami41, one more thought before I get a little bit of work done: Someone needs to be checking him for pressure marks every single day. My carers check just about every inch of my skin, from my neck to my toes, every morning, for any signs of pressure marks. Again, this kind of prevention is necessary to avoid the months and months of pain and loss of mobility a pressure sore can bring on (not to mention serious infection and death).
Oooh! I thought of a question!
umkay, my older son has cystic fibrosis (CF), and airway clearance is one of the things we do every day to keep him as healthy as possible. When he was a baby, we did “clapping” by hand, but when his chest was big enough (20" around, I believe) at about 15 months, we got a Vest system to do his airway clearance for him. He currently does 30-minute treatments twice a day.
The Vest was, I believe, developed specifically for CF, but is used for other conditions as well. I know a young woman who has various disabilities and is particularly prone to pneumonia. She got a Vest, and it’s made an enormous difference for her.
Would someone with your injury be likely to benefit from a Vest? Would it be worth it for you? I believe you said that “coughing” you takes just a few minutes, whereas my son is on the machine for a total of 60 minutes/day (on healthy days; when he’s sick it’s more). Would the extra time negate any other benefits?
Just curious if it’s something you are aware of and have considered, or whether it’s not feasible for you.
Umkay, you mentioned that part of your job involves talking on the phone. How do you use a phone? (If this question has already been answered, feel free to ignore it.)
I’m sorry you’re stressed. Unfortunately (or not), I definitely still feel stress. I don’t feel tensed shoulders and a roiling belly, but my ability to get riled up about a guy, a fight with a friend, or a work deadline is still very much intact. It’s all upstairs, but it’s there. It’s why I can still have orgasms; even though my brain and my body are disconnected for all conscious purposes, there’s something unconscious that remains–something is telling my brain that my body is climaxing. I can say with certainty that it’s not my spinal cord (I’ve seen the x-rays), so for now, my docs and I and the medical community at large are stumped. Speculation welcomed, internet-trained doctors. 
This thread has been a great read, umkay. Not sure if you’re into South Park, but I read your username in Mr. Mackey’s voice.
What’s your favorite ice cream flavor?
Hahahahaha! I love this question!
But the answer is “nope.” I can’t storm out of a room, or slam a door for that matter. Both would have been helpful in my late teens. Any attempt by me to turn tail and book it out of a room usually ends up with me hilariously and anti-climactically knocking over a chair/lamp/innocent bystander or slamming into the door jamb. So I prefer to end my arguments on a “hug it out, bro” kind of note.
I’m sure I have, but there are gaps: Anybody know of a facial expression that can convey the spite or smirkiness of a raised middle finger? Because I’d love to know.
Hm. That’s an interesting question, and maybe my friends and family have noticed me doing this, but I don’t think I do.
Why, thank you. Emoticons help. 
This is very intuitive of you; most ABs don’t think like this, but you’re absolutely right. And it is scary sometimes. Back in the day, there were a few occasions when both my attendant and I forgot my chest strap when I got into my chair in the morning. Things would be going fine, but then I’d get jostled going over a door jamb or something, and I’d fall forward onto my lap. I never fell completely out of my chair, but it’s disturbing and frightening to be falling and not be able to do anything about it. Of course, I was lucky that I always had someone nearby to put me back upright. But I never forget my chest strap anymore.
As a sidenote, after all these years, I still get nervous when I’m being hoisted into or out of my chair. It’s really unnerving to be hanging in the air, several feet over a hardwood floor, and know that there’s nothing I could do if a strap broke or the sling ripped or something (super unlikely, but these are the things I busy my mind with, mid-hoist). I also feel insecure when I’m being transferred by hand, like I have to be at airports. I’m not very heavy, but I always tell whomever is doing the transferring to be prepared that I’ll feel like a sack of potatoes once they’ve got ahold of me. It’s not like lifting an able-bodied person of the same weight, since I can’t help them at all by using my core muscles or shifting my weight at the right moment.
No way! I am way careful about that stuff. Besides, it would only be a minute or two before I went dysreflexic if somebody sat a fajita plate on my lap or something. So, numb or not, I’d know! :eek:
For me personally, the line where my sensation picks up is totally black and white. It definitely goes from nothing to full sensation in the space of a few millimeters. In fact, I mentioned in another post that this line is actually more sensitive than anywhere else I can feel.
Of course, every SCI is different, so all paralyzed folks have slightly different experiences. Some incompletes have totally normal sensation throughout their bodies, some feel pain or pressure but not heat or cold, some can move parts of their bodies they can’t feel, etc.
Well, do you have the ability to raise just one eyebrow? Because I bet you could get close with that. 
I described in an earlier post that I sleep on a special mattress that subtly shifts me all night long, so I don’t have to be turned. Before I had the bed, someone had to turn me every 2 hours all night long. Often as not, I’d sleep right through it.
I leave a catheter in place overnight connected to a night bag, so no one has to come in and cath me. It’s not actually advised with the catheter that I have, but it’s a solution that has worked for me for years with no ill effects. I found a long time ago that I “go” way more at night than during the day (amiright, ladies??), and so I needed to be cathed like 3 times a night to avoid an overfull bladder. Unlike repositioning, I was not able to sleep through being catheterized, which was irritating. Eventually I just said, “Leave it in, for the love, and get out of my room!” :mad:
Why is there no “blushing” emoticon?? I’m flattered. Wow. Thank you!
I don’t know who you think you are, mister, but I for one am insulted and offended that you would even dream of insinuating that I, a poor cripple, could ever piss anyone off! Not to mention what that says about the character of the pissed-off party–how could anyone be mad at me, strong, disabled, inspiration that I am??
Kidding. I love your question.
The most recent occasion of me pissing someone off (that I know of), was maybe a month ago. What happened was, I told some friends a story that happened to one of our other friends.
To be fair, the story was hilaaaaarious. But it also involved an awkwardly timed bowel movement (so maybe I get a kick out of telling a story like this about an AB person…). But I swear I didn’t do it to embarrass or hurt my friend.
It’s just that, when she told me and a few of our other girlfriends, she was laughing hysterically and acting like it was no big deal. So, over drinks at a bar, I related this awesomely funny anecdote to some of our other friends, some of whom are dudes. Dudes who later mentioned it to her. Which really embarrassed her. (Dang–in retrospect, how did I not see how that would happen at the time?? What a crap friend I am).
Anyway, she came to me about it and was really mad/hurt that I had done that. I apologized profusely and felt like a real asshat for the whole affair. But she forgave me and we are thick as thieves again.
But really, how could you not forgive the poor handicapped girl? 
[Oh, and I’m not on any mood drugs. I’m naturally this chipper, if that’s what you were wondering].