[madisgram]

as many of you know i now caretake my ex-husband, david, who is paranoid schizophrenic. he has lived with me for a week. there have been ups and downs this first week but until today i felt that this task was manageable. it may still be manageable. i see the glass half full, not half empty.
i'm totally exhausted but need to write this before i go to bed. i am beyond angry. i am beyond belief to what has happened. i feel our family has been betrayed, VIOLATED. my distrust of others has once again reared it's ugly head. i am almost speechless. i need all of your hugs if you have one to offer.
my son who is career millitary has had to serve in iraq 3 times in the last 4+ years. each tour has been longer than expected. during that time since the family was so spread out: me in sc, me then in ga, tom's family first in texas, then in ga. during this time david was placed in an asisted living facility(alf) in florida. all our family is from florida so we thought that was the best thing to do until we could all get moved to florida ourselves. now we have accomplished that mission and david is living with me.
this morning was the first sign of things very awry with david altho i had seen some red flags this week. i attributed his off behavior as adjusting to finally living with family again. he began the day yelling out in the yard at 7 AM. i went out and asked that he try to quiet down. he said belligerently, "i didn't say/do anything. it was "him""...(the one he calls "ghost".)
to shorten this, as the day went on he became increasingly agitated, swinging his fists, making a strangle hold into air like he had a live human being between his hands, talking incessantly to "him", getting into my face and yelling obscenities at me, etc. even my doggie was terrified of him.
my son and family had invited us for family dinner at 430 pm. by this time i was a nervous wreck because david's behavior was beyond description. he did get dressed and all the way down in the car to tampa he was swinging at the air, yelling, talking about demons, taunting me, etc. my whole body was shaking when i finally got to my son's house.
david's behavior continued at my son's house. we discussed me taking david into the ER at the VA in the morning for psychiatric evaluation. i have never seen david like this since he was first diagnosed, 1974. he's has been labled a non-violent schiz. ..and this is where the story gets scary.
the alf that david was living at was told to take him to the VA last feb. we were told that was done and his ongoing care was thru them. when my son returned from iraq this last time he took david to the VA near the alf and he saw a psychiatrist. that pdoc did not agree with the meds the alf doc had david on. all his meds were changed.
when my son handed me david's meds from the alf last week, we assumed the meds were the ones from the VA pdoc. since i have a few dx's myself i was shocked that david was not on anything stronger than 20mg. of abilify. i mentioned this to my son but we had no idea where this observation would take us at that time.
the alf owner who has been charging us over 3500+/mo for david's care had never taken him to the VA. she never filled the meds prescribed as far as we know that my son returned to her from the VA. what i have been giving david was less than what i take for my BPD. this morning he became psychotic (from the alf sending him to us with meds that do not work for a schiz. that has psychotic breakthroughs. the docs name on the meds, the alf doc)
we entrusted david's care to a licensed alf in florida. i had already gotten bad vibes from the owner when i asked that his private bath be cleaned on two of my visits because it had the strong odor of urine in there. it literally made my eyes burn. she argued with me blaming it on david missing the bowl. knowing that we were planning to take him out of there i didn't want to get in her face about it. she followed me to the car arguing to me even tho i was getting into my car to leave. i turned to her and finally said, "it doesn't matter how the urine smell got there, it is unsanitary and needs to be cleaned." the next visit my son notices the same foul odor.
her "sweet" note at the top of the list of his med sheet says, "here are the meds that david is on. he needs to continue taking them. good luck!!!" (i didn't know until tonight that this doctor's name was the alf doc)
i'd like to send that note to her "up to where the sun don't shine". this woman has violated our family in the worse way. more importantly she has violated a sweet, sweet man who is mentally ill. we entrusted her to care for our loved one. a human being. a wonderful man. she had no intention of following our direction and for dave to get care at the VA. she dictated his less than acceptable mental health care with her alf doctor. she charged us for taking him to the VA visits he never had. she charged us again for having to fill meds at a pharmacy because the VA had not mailed them as agreed. we believed her. we trusted her. we visited as often as all of us could do under the iraq circumstances...and 3 small children would allow. i drove to florida and would spend a week at a time taking david out for day trips. we wanted him to know we cared and loved him. we wanted to assure him that we had not abandoned him.
tomorrow i take david to VA to the ER. i will get him the care he needs to become as stablized as we can expect with this dx. if the results aren't satisfactory to us at VA, then we will go a step further and get him a private pdoc to get him on the proper meds and stablized, then can resume VA.
i can assure you that i have used restraint of pen writing this....but i am no longer shaking with rage as i was when i started this post. if a loved one of a mentally challenged/ill individual is reading this...BE ON NOTICE. your loved one may not be getting the proper medical care for their dx. you can be told or reassured a thousand times but don't assume it is true for one new york moment. ask to see records, all records, hound them, let them know you are watching them like a hawk. how many other unfortunates are out there with NO VOICE?
i don't like to get this angry but this lady right here is on a mission and ANGRY I AM. that lady will see her little-ole-alf-self closed down if i have an ounce of strength left in my body.
thank you for letting me rant...thank you for reading...thank you all for being here for me...and david.

[SeptemberMorn]

You go, girl!! Do everything you can in your power to right this wrong! Just don't forget to take care of yourself in all of this.

[Berries]

((((((((((madisgram))))))))))

Oh, I would be ( I am ) IRRATE!!!!! Poor, poor David!!!!! OMG, I am speechless.
I cannot believe this. I cannot comprehend someone doing this. I just don't understand this type of behavior. How can that woman live with herself??????

Oh, honey. I am so sorry.

I am so sorry David.

And yes, YOU GO GIRL!!!!! SHUT HER DOWN!!!!

But, also yes--don't forget to take care of yourself.

Bloody heck I am BPD and yet I take 20mg of Abilify WITH prozac and carbamazapine !

Follow this through you are right to be upset !

[jbug]

OMG!!

I can see why you are angry. I would be too. Good luck tomorrow and be vigilant and get him the care he so richly deserves for being a veteran.

Jan

[AAAAA]

(((madisgram))) I don't blame you a bit, I cannot even imagine! I hope you are able to put that place out of business. I would contact the media in that area, let them know everything that has been going on. Most stations have those in depth, undercover things. You have to let the public know that these people are not giving the care they are being paid to give. I'd also check to see if any law suits are pending against this facility and throw your own lawyer into the mix, many specialize in this field. So sorry that it all falls on your shoulders. Good luck and please keep us informed as to how things are going.

[notz]

Madisgram,

You know I'm in your corner. Ditto on taking care of yourself.

Halt comes to mind. My version too! This seems like a really tough spot for you. There's been so much recent change and now this outrageous betrayal. Please stay in touch with all your support. First things first. You will be nothing to David or Tom unless to thine own self be true.

Chin up, my friend. My arms give you hugs.

notz

Valor: strength of mind or spirit that enables a person to encounter danger with firmness : personal bravery

[Liberada]

(((((madisgram))))) I hope today goes well

[gimmeice]

((((((((((((( madisgram ))))))))))))) (((((((((((David))))))))))))))))

It sounds like he received horrible treatment, I would definitely file a complaint about this woman and her facility, I am not sure who you would need to complain to maybe the VA could point you in the right direction on that.

[hurtingintn]

(((((madisgram)))))

never assume anything...i also learned this very valuable lesson the hard way..take care of your family and yourself ..best of luck to you and yours

[splitimage]

(((madisgram)))

I'm so sorry that you and David and your family are having to to through this. I would be absolutely irrate too. Definitely take action against this woman and her facility, but remember to take care of yourself too.

I really hope you're able to get David onto proper meds quickly.

---splitimage

[pegasus]

((((((( madisgram )))))))

Wishing you strength and the right treatment for David. Please let us know how he is.

[Perna]

That is so horrible! I hope David "recovers" from that treatment; I'm very glad he is in your care now.

[pachyderm]

What is an "alf"?

[Sannah]

[sabby]

((((((((((((((( madisgram & David )))))))))))))))))))

These kinds of things just anger me to the bone. What the alf did is illegal, pure and simple, not to mention immoral and reprehensible! I'm so sorry that David had to endure that kind of treatment and that you are both now suffering for it.

I hope you found some support today at the VA and a change in meds as well. Sending you both strength and prayers.


sabby

[cantstopcrying]

Originally Posted by pachyderm

What is an "alf"?

Assisted living facility

[Capp]

((madisgram))
first, I am so sorry you are having to go through this...
you are in my thoughts

Sorry to be so blunt...
Get an attorney who specializes in these cases.

I realize you have already mentioned most of these, but I want to add my two cents.
Get His Records from the alf if you don't have them already...please do it as soon as possible. It's amazing how quickly records are misplaced...
Make sure any and all medications given are listed, dosage, person dispensing them, and the physician prescribing them.
*Do not take it for granted this information will be in the treatment notes. The list of meds dispensed are also kept separately. This also disappears quite quickly.
Request...aka demand...the name of the pharmacy this woman used to "fill" David's meds.
The owner, physician, and the dispensing nurse can all be held liable--the nurse less so since she has to abide by the med orders. However, she will know when/if meds were changed, etc..no nurse will lie at a deposition because it will cost her her license. Obviously I don't know who dispensed the meds. They better have had the training to do so, however.
This place is licensed so call the licensing board and find out how to lodge a formal complaint. It will also allow you access to other complaints from other families. If there are sufficient complaints, it not only expedites an investigation it also provides cause for a class-action suit.
Re the filth. David will not have been the only patient affected.. An investigation will also examine this problem.
Others at the alf may be having health problems related to the unsanitary conditions.

Although deeply sorry for the anguish this has caused you, please don't forget her actions may be considered criminal acts.
Yes, call a local TV station, letters to the editors of any newspaper, notify NAMI
But get those records first.
This woman is already on alert that you are angry.

Your first concern is getting David stabilized, I know.
From my own experience, I cannot tell you in strong enough words to get your hands on every bit of paper connected with his care.
Include any info you can get from the VA. If appts were made and not kept, that is on file. If she has claimed he was taken to an appt on certain days, that is also on file.

madisgram, you are about to start putting together a puzzle that is going to have missing pieces. You do have the chance, though, to minimize the lost pieces.

Absolutely take time for yourself...
It sounds like you are channeling your anger and disgust where it needs to go, but you still have to treat yourself with kindness.

This is far more common than people know...It's saddens me to say it.
The best care will go to patients whose families/patient advocate are visible. Unannounced visits at varying times of day and night, verbal about concerns not just for the family member but their roommates and/or fellow patients, not taking no for an answer and positively not accepting, "I'm very busy right now can you return later?" Your response? "I'll wait right here for you." And do it. Don't move. Hold your pee. They will respond more quickly if you don't buckle under their authoritarian tone of voice.

My very best wishes for you to get this settled quickly.

Capp