Volume 1, Issue 2 - February 2001
And So It Goes...
By Vinny Distefano
We have had a number of requests to make this newsletter easier to print. It will now be possible to click the print icon to make hard copies.
Where We Stand
Working "Within the System"
I would like to get everyone caught up to where we are today and how we got here. You can read the beginning of the story on Angie and in the January edition of this newsletter.
Last summer, while Angie was going thru her first set of "dives" in the HBOT center, Barbara and Ronnie, Angie's Mom and Dad, bought a van capable of transporting Angie. That made it possible to schedule appointments when it was convenient for the medical staff and us. It was also the key to getting Angie home for the day on weekends and holidays, …home with her family. For now, she must still be brought back to the nursing home at night. The stress of relying on the Lynx system, a city run adventure of getting patients to and from appointments, forced their hand. Then, to make Angie more comfortable at home in her room, it became necessary to have a hospital type bed, with head and foot adjustments and a special mattress. It is the only way to find combinations of adjustments that let Angie rest and not become sore. Her room looks great, too. Pictures on the walls and party mobiles hanging on the ceiling, give her something to focus on. And a sound machine with waterfalls or ocean waves or forest sounds for her ears to sense. It all seems pretty basic. You just need to go to the doctor once a week. You just want to go home once in a while and be with the people you love and be able to relax. And what a difference when she is home. No people yelling in the halls, "Hello!" at the top of their lungs. No buzzers or paging "Dr. Howard, Dr. Fine, Dr. Howard." No staff coming in to attend to her when the mode strikes them instead of adhering to a posted schedule, a schedule they came up with. You can see Angie is less stressed and she is teaching us a new language. Slowly, we're starting to understand her “signs.” She let's us know she wants something done with body and head movements. When one of us thinks we've “decoded a message”, we pass it on to everyone else. When we figure out what she is trying to communicate, she stops the movements, as if to say, "Yes, that's it!" If you tell this to the staff, they give us the now familiar, "you poor sap" look. We can't get anyone to believe us that this is happening.
Just The Facts, Jack!
One For All. That’s Just The Way It Is.
But why would they? The book says she can't do any of this with the injury she sustained. Her case is all but closed. No more discussion of therapy to help her straighten her limbs. If you put your hand behind her knee, you can feel how tight she is. Her right leg will not lie flat. It’s always bent. We rub her legs and ankles and toes when we're with her, but the staff doesn't have the time or motivation to help her. Her wrists are turned in an un-natural direction. But if you hold her hands and apply an opposite resistance, in time, you will be able to get her wrists in a more naturally straight position. We begged the staff to get braces to help her for many, many months. This tightness can't be without pain. Now, too little, the braces sit on a shelf unless we attach them. Oh, at times they might be quickly strapped on her with little or no care. All too often, if they are applied, they remain on for hours and hours, themselves causing pain. The system of caring for someone like Angie or a 98 year old Alzheimer’s patient is the same. It appears that no one, doctors and nurses and CNA’s alike, thinks there is a need for caring for young injured adults differently. Just business as usual, waiting to change the room over for the next client, I suspect. These people seem to be income-generating machines. Sure, every so often, during sweeps, the networks will do a story on the conditions in nursing homes. For people not visiting one, it doesn’t register. But then like magic, it all seems to go away. But for the families and friends of the people in these "institutions", it never goes away.
Much of the staff takes care of Angie consistent with her needs. Then when everything is starting to go well, the staff will change. I don't just mean shifts, I mean gone, good-bye, new people. This means educating the "new-bies". Whatever training they do receive, is woefully short of the care these people really need,,,to be treated with respect. We’re constantly seeing new faces and new languages. It seems unimaginable, but we've had CNA's taking care of Angie that seem do not read and/or speak English well or at all too good (pun intended). This could actually happen…………
Us: "Angie needed to be turned at 6pm . It's now 7:12pm "
Them: "Oh yes. Uh-huh"
Us: "King Kong is coming tonight"
Them: "Yes, (mumble some unintelligible words here)”
This sounds funny, but the point is that sometimes the answer has nothing to do with the request or the question. This is extremely frustrating when someone you love is in need and we have to rely on individuals who are less than qualified to care for her. We have logged many, many hours trying to teach people who have somehow passed a state exam. I admit I have lost patience with a few of them in the past. I once told Angie that I would never let anyone hurt her and if she ever needed me, she just had to call. I watched a nurse trying to "drill" for blood, turning the back of A’s hand black and blue, blowing veins, digging and digging. I can only watch them hurt her for so long. I give them a chance to show me they can do their job. Then, when Angie has had enough, my Italian/New York
For a time, I had to stay away because these people would not come into the room to care for Angie if I was there. That really made me...well, I'll use the word, "Fangry." Now I'm causing Angie not to be cared for!. I told Barb and Ronnie what was going on and why I was staying away. They got me to calm down a bit. We were running out of staff and I had to try to be more patient and let these people do what they do. We’re all frustrated, but I won’t apologize to anyone. They were hurting Angie and that's all that mattered. We know, with the current system, there isn't much we can do. Her Mom and Dad understood what had happened to me. They had been there themselves. We decided to just pick up the pieces and make Angie comfortable once they left, which is the bottom line.
Now, couple this with a staff stretched to the limit… 50 patients, one nurse. One person requiring a minute more than the allotted time, will back up the whole schedule. This has led, on more than one occasion, to Angie getting the wrong medications! We suspect at times, no meds. Over time, you kind of get a feel for what the medications are doing. A pattern develops. If the pattern changes, then we look for the cause. Is she responding to something? Pain? Sight? Sound? Is she more aware of where she is? Any of these could cause changes to her behavior. But we're pretty good at detecting if something is wrong. Once in a while, her skin will break out with hives. Or her normal daily nap pattern is interrupted with, what can only be described as, as a “get me the hell out of here” look and her being awake for hours on end, rocking her head back and forth. The doctors concede that Angie is in a state they call "locked in", aware but unable to awaken. They say she will stay there. We’re with her so much, we can see improvements, albeit small ones. The have decided that Prozac would help her mind cope better. They help her mind, but not her body? How will they explain to her later when she does awaken, “Well we didn’t think…”
In Need Of Repair
Working "Around The System"
Here’s a five-minute time slice. We have met a number of people while walking with Angie. Upon arriving back from one of A’s treatments, the odor of urine was very strong in the hallway. At first it seemed to be all around us, as if the floor had been soiled. But it was coming from a patient’s room. They were in need of immediate attention. A CNA was already in the room. Great! But surprise, she had only come to take the person’s food tray. Yes, imagine eating in this condition. And worse, they’ll let you. So we pressed the call button to ask for help. Again, to our surprise, the nurse asked, “Do you need something?” We silently pointed so as not to embarrass anyone and signed the universal “Can’t you smell it?” gesture. Then the nurse leaned over (apparently she doesn’t read “universal sign language”) and asked “Did you call for help, J_____?” How could she not know why she was summoned? The smell in the room! It was strong enough to reach out into the hall. Finally, a verbal request was made. OK, one down, let’s move on to Angie now. When we return from off-site trips, she needs to be hooked up to her food. Remember, she is still being fed thru a tube in her stomach. The nurse now arrives with the wrong food. The formula was changed about three weeks ago. “Oh, I didn’t know that” was the reply. Yes, it’s in the meds book, but who has time to read? So now to make the change, but her keys are missing! Don’t forget, this took place in the span of five minutes. There are 1440 minutes in a day. So things like this go on all day, day in and day out. Families like us are at least aware of it, and try desperately to reduce the mistakes, but what of other families? We’ll be talking to them soon to find out how they cope with the system as it is.
Help Is On The Way
“Creating Our Own System"
In January, Angie began her second round of Hyperbaric Oxygen Therapy treatments. It’s considered experimental, therefore not covered by medical insurance, at least not for head trauma. The data to date shows no benefit from this kind of therapy. At least that’s what we’ve been told from “traditional” doctors. But a conference of doctors with a vision from all around the world is being held this spring to compile information on HBOT and the results it’s achieved. We’ll report on it here as more become available. She will start with one per week. It's always a little scary to see her in the tank. You just want to hold her hand or hug her, but she's in there by herself and all we can do is talk to her and let her know that everything is OK. She really does well in there, though. Most of the time, she stays relaxed and sometimes she’ll catch a power nap. She does get a sedative before we leave the nursing home. I don’t recall her ever telling me she was claustrophobic, but now is not the time to find out. And the pressure from a simulated dive down to “17 feet underwater” has to be uncomfortable and a bit unnerving.
Getting Started
Spreading The News
We are moving on getting all of the releases to allow us to begin filming the documentary mentioned last month. We hope to talk to the doctors and staff in Miami Hobbs
I was watching one of the true-life trauma shows on TV last week. One of the doctors told the family of a seriously injured man, "God heals the wounds, the surgeon just takes the stitches out." With our support and God’s hand, Angie has perhaps taught her doctors what she already knows. Never give up. And keep fighting because prayers are answered in time. You just simply have to believe. Happy Valentine, Sweety...
