I need some strength from my CD family

[donna723]

Kathy, while some of what she's saying might be true, I have my doubts. My ex, the kid's dad, is a long term hardcore alcoholic and has been for over 40 years. He's been hospitalized countless times. He too has seizures but technically they aren't from drinking, they are from NOT drinking! After so many years his body is so dependent on alcohol that if he's too broke to buy any, when the alcohol starts clearing from his system, part of the withdrawal process is that he goes in to grand mal seizures and he ends up in the hospital again. What he has is NOT epilepsy, it's a symptom of his alcoholism.

When my kids were little, they both had suffered seizures a few times and we were always told that there was a history of epilepsy in the family because the ex's father had seizures. Turns out that his were caused by alcoholism too.

So she may or may not have really been diagnosed with epilepsy by a doctor. My nephew has epilepsy and wasn't diagnosed until he was in the military. His is triggered by hypoglycemia and if he goes a long time without eating, the drop in his blood sugar levels will bring on grand mal seizures. He was given a medical discharge from the Navy because of it. He was not allowed to drive until he had been on medication and seizure free for a certain period of time. It may have been a year but I honestly don't remember. But he was NEVER, even at the worst of it, told that he couldn't work at all! That part sounds like pure BS! True, there are certain jobs that he cannot be hired for because of his epilepsy. He had always wanted to be a fire fighter and had to rethink it after his diagnosis. But it certainly doesn't prevent him from doing any of the other thousands of jobs out there that aren't consider to be hazardous! He has never been without a job and leads a perfectly normal life.

 

[Kathy813]

Oh, I have my doubts, too. She is claiming that no rehab or halfway house will take her due to the epilepsy. First of all, wouldn't Hippa protect her from even having to tell them? Also, according to her story, any addict or alcoholic that has epilepsy would never be able to get treatment. Sounds fishy to me.

She is using someone else's phone to send me texts. Her latest is that if she is alone when she has a seizure she could die. Considering that this is from someone that threatens suicide every other day and regularly mixes alcohol and benzos without any concerns about what that could do to her, her sudden worries about dying seem rather opportune.

Her therapist has still not called me. I have a call into my therapist and I am waiting to hear back. I want to ask both of them if there could be any validity to difficult child's claims that she couldn't get into treatment with a medical concern like epilepsy.

Thinking back, difficult child did have a seizure when she was in the psychiatric hospital about 6 months ago. At the time, we attributed it to sudden cessation of her beloved Xanax.

husband sent her an email saying that we don't believe anything she says due to her history and that he would need to see the paperwork with the diagnosis and recommendations for treatment. He also asked her what medications she has been prescribed to manage the seizures. He hasn't gotten a response from her yet.

 

[Nancy]

I think if that's true she should apply for SSI.

 

[Kathy813]

Nancy, when I looked into SSI for her over a year ago, I was told by an expert that I was referred to by NAMI that getting SSI when you have addiction issues is nearly impossible.

 

[Nancy]

But now she has epilepsy, shouldn't that be the driving force? That is what is preventing her from working.

 

[donna723]

... or it could be that a halfway house, if they saw that she's having seizures, would suspect that she was continuing to drink and/or do drugs. And if she really does have epilepsy, the very worst thing she can do is to keep drinking and doing drugs. But it all sounds very fishy to me.

 

[Kathy813]

I agree, donna. Nancy, it would be worth a try to contact him again and see if this changes things. I think I will send difficult child his number and tell her to contact him. I just have to find his name again. He didn't charge anything until after the person starts getting the SSI and he has a high success rate.

 

[dstc_99]

If the seizures are due to withdrawals then she should be placed in a facility until she can be weaned off the alcohol just like anyone else with addiction. I know she has done that before so she shouldn't have any concerns with doing it again.

I remember when I worked in a hospital pharmacy that we used to have to keep beer in our fridge for patients who were alcoholics. If it was determined that the withdrawals would affect their healing then they were allowed beer to stabilize them. I used to laugh because they would buy the cheapest beer made. It was probably disgusting.

 

[Childofmine]

Kathy, I am so sorry. First, I think you are doing the right thing, waiting, letting time go by, getting confirmation, not acting. Be patient. Often, things happen without our involvement.

That doesn't mean you won't decide to act at some point. One day at a time.

Is there a case manager who can guide difficult child in determining her next steps? A social worker?

I just don't think it's going to be effective if we---the parents---try to be the case manager. Warm hugs and keep posting. I know how hard this is. It's scary and it's hard.

You can only do what you can live with, and whatever you decide to do, we are here to support you.

 

[Kathy813]

easy child called me a little while ago and when I told her what was going on she didn't believe any of it. She thinks that difficult child is totally making all of this up to try to get us to financially support her again.

 

[Childofmine]

You get told so many lies, I've often said I won't believe the truth if I ever do hear it from difficult child. I know it's crazy-making, all of the back and forth, is it true, is it not true.

She needs to give you permission to review her medical records, and then you need to see the records. Then you can act on factual information, not hearsay or uncertainty.

 

[Scent of Cedar *]

I
told husband that I would tell her that she needs to have
the doctor records faxed to us

difficult child daughter began having seizures (this was before the beating, so maybe a year and a half ago) related to one of her pain medications. I think it was Ultram.

The male she was living with at the time also had a seizure, related (supposedly) to the same pain medication.

Though she had three or four seizures during that time, I do not think difficult child daughter has had seizures since.

They were both using drugs and alcohol during that time.

I have a nephew who began having "absence" seizures in high school. He continued in school, graduated, and is working toward his Master's with plans for doctorate.

He is working.

He drives.

Your difficult child may have a more debilitating form of the illness...but nephew is receiving proper medication and lives a relatively normal life.

I am not aware that difficult child daughter was ever treated for epilepsy.

The only way you will know for sure is to see the doctor's report.

One thing at a time, Kathy.

Cedar

 

[toughlovin]

I think it is wise to get confirmation by doctors reports before you believe anything. I would also suggest that you (or husband) tell her that she needs to sign a release so you can actually talk to the doctor... and then if she does that (might not if she is lying) I would make sure you tell the doctor about her drug history.... seems like a quick diagnosis of epilepsy to me but the doctor may not have all the information he needs!!

TL

 

[Nancy]

Kathy my easy child would say the same thing.

 

[in a daze]

Hi Kathy, I am so sorry this is happening to you.

My kid has been getting SSI. At the time he was awarded, he did have a diagnosis of substance abuse and bipolar disorder (the bipolar diagnosis was since changed back to major depression). At the time he applied he had been in two rehabs and had been hospitalized 4 times in the last two years. We did it online, and we did not use a lawyer. It took about 9 months, and they did send retroactive payments. So I'm not sure why NAMI told you that, as your daughter has a similar diagnosis and has been hospitalized.

He doesn't see any of the payments as they were going for his rent and I am representative payee. He works part time and he stopped asking us for money as he learned that we weren't giving him any more.

 

[Kathy813]

Hi Kathy, I am so sorry this is happening to you.

My kid has been getting SSI. At the time he was awarded, he did have a diagnosis of substance abuse and bipolar disorder (the bipolar diagnosis was since changed back to major depression). At the time he applied he had been in two rehabs and had been hospitalized 4 times in the last two years. We did it online, and we did not use a lawyer. It took about 9 months, and they did send retroactive payments. So I'm not sure why NAMI told you that, as your daughter has a similar diagnosis and has been hospitalized.

He doesn't see any of the payments as they were going for his rent and I am representative payee. He works part time and he stopped asking us for money as he learned that we weren't giving him any more.

That was interesting to hear. Does he get SSI or SSDI? I went to the government website to look for an online application for SSI and it said:

How Do I Apply For SSI?
We do not have an SSI application online. If you would like to apply for SSI benefits for:

Where did you find an online application?

 

[in a daze]

Hi Kathy, she would be applying for disability. If she doesn't have enough work history, she would be getting SSI. Once she is called for the interview, if that happens, they look into her work history and if it isn't enough (I'm not sure how much is enough to get SSDI) she will get SSI, which is not as much money.

My difficult child had only worked part time on and off since high school, so he only qualified for SSI.

Here is the link:

http://www.socialsecurity.gov/applyfordisability/

 

[BusynMember]

I'm going to weigh in on SSI.

Whether or not she can or can't work or has epilepsy or not, she isn't working and she needs some money. If she can get the meager amount given by SSI, it will probably make you feel better. SSI also comes with Medicare and usually Medicaid so insurance is also covered. I would try to get it for her just for your own peace of mind.

You do need to have doctor's documentation and a firm diagnosis and the doctor has to put down that she can't work at a job that will sustain her due to her disabilities. This is what Sonic has. He works, part-time, and gets a small amount of SSI. There are a lot of maybes when being approved for SSI. It can take more than one time to apply before getting it.

I am so sorry you are in pain right now and hope you have a good day today. Or at least can try not to think about Daughter all the time. Yeah, I know it's hard.

 

[Calamity Jane]

Kathy,
You've been through so much. I recall your difficult child making great progress at times, then falling backward more recently. She is a dual diagnosis individual, and that is very tricky. Fortunately, you and husband are getting wise counsel and are not making any rash decisions based on what may be false claims. difficult child's tend to magnify half truths, so although she may absolutely have epilepsy, the statement about not working for a year may be totally untrue. Take your time, weigh your options and ask for proof. You're nobody's fool - you have a PhD in difficult child! In the meantime, your concern about her possible homelessness is valid and so heartbreaking. We're all here for you.

 

[DammitJanet]

Kathy isnt your dtr taking lamictal? That is an anti- seizure medication. Also a few of the benzo medications help control seizures. Dont know if you remember it but when I ended up in the hospital with the meningitis I had several grand mal seizures and we believe they were mostly caused by the fact that the doctor's didnt wean me from my medications, they simply didnt give them to me. The fast cut off of all the medications I was on for bipolar which are also used for seizures caused me to have seizures. Once I got put back on my medications I have never had another seizure and no one ever suggested I couldnt drive. Of course, I havent been able to work in years but that is another story.

It is possible that she isnt able to work a full time job because of her mental health issues. I am honestly not sure if I could work now even if my physical health problems went away tomorrow. Personally I wish I would be able to but I dont know. My good times never seem to be the same time each day. That would make it hard to set up a schedule.

As far as everything else...you getting back involved in helping to support her...I think that is a very slippery slope. Tony and I were talking about this issue just the other night. When we were in our late 20's we had no one who would step in to help us out with all the every day life stuff. We wouldnt have wanted them to either because that would have meant they had a right to have a say in how we lived. Of course by that time Tony was an orphan but if my father had been paying our rent and utilities every month then he really would have had the right to tell us what we could do, how high to jump and when to do it. I would have hated that. What irritates me is that Cory especially doesnt seem to get it that if we are helping him out that it gives us the right to put our two cents in. We dont say a word to Jamie because he never asks for anything. I mean right now both Billy and Jamie are living in our house for quite a reduced rent but they dont think we should be able to have a say so in anything. Because of this I refuse to listen to either of them when they complain about the other. Billy is especially bad about this because he feels he could find a place to live cheaper than $200 a month plus utilities. I dont think so. (They are each supposed to pay $200 a month for rent plus split the utilities. Splitting the utilities really isnt fair though because Billy uses far more of them than Cory does. Billy has a pretty expensive cable/internet package, he has a ton of electronics in his bedroom which use quite a bit of electricity. Cory only has whatever cable comes through because Billy has it...he doesnt have a box or any type of computer to use the internet.) When Billy went to live with Jamie for a couple of months years ago our electric bill dropped by over $100 a month.