Dealing with mental illness

[empeg1]

As I have written, my oldest dd is now living with me (for how long I do not know). She does indeed have Alcohol Related Neurodevelopmental Disorder. And, the above is presenting itself heavily through psychiatric difficulties. My dd has always suffered with anxiety and I have observed more than one cycle of depression. Then there is the huge problems with sensory integration and the sleep disorder, life long. As a preschooler, she sleep walked and then she developed night terrors. Now she sleeps maybe 3 to 4 hours a night and she stays up most of the night.

I am under a great deal of stress. Not only is work hitting the bar bell for stress, with 15 evaluations I have to complete this month, in addition to my regular work (a peek into the lives of those of us who work in special education). But, life at home is even more stressful. DD is quite dysregulated, exploding at times without any clear reason, catching me off guard, until I feel almost like I have been beaten. Once dd is fully triggered, which can occur very, very fast, she cannot stop. The other day she followed me outside, where I had gone, telling her I need a "time-out (a familiar term for dd, for mom needing a break) for 10 minutes. DD chased me outside, screaming. I told her I would not argue with her and did not. But, I could see she was not processing what I said. So, I jumped into the car and took off; it was the only way to stop what was happening. I told her, I will call in 5 minutes. I did and DD was in hysterics, having ripped up bills that she grabbed, into shreds. Then there was the 1/2 hour, non-stop, I hate this food, screaming complaints when I brought home Chinese food for a treat. DD was not responding to any nonverbal cues that I was not pleased with the above. After telling her once, I am sorry you do not like the food. I will not go back to the restaurant again, I kept my head down, no comments or head nods, but she could not stop. I finally said, I know that you do not like this food. I am sorry you are disappointed. And, I need a little quiet now. Oh boy, then she really exploded! Later she told me, it wasn't the food, mom. Her bf called to tell her he was going out that night with all of her friends in Denver and she was distraught. Repeat triggers from Denver are keeping dd from settling at all.

Then comes the problem of how to get her help. My dd is not the major stumbling block. It is government agencies that have driven me around the block. I called the county mental health access line and got hold of a therapist, after being on hold for 1 hour and 15 minutes! No way could dd do that! A therapist finally got on the line and explained the multiple steps and appointments, dd would have to attend before a therapist would then decide if she could see a psychiatrist. Then the wait to see this doc would be about 4 months! I reiterated, my dd has brain damage. She cannot go through multiple steps to see a doctor; she will be overwhelmed by the above and will bolt. It is not that she won't; she has organic limitations that will make this process overwhelming. To which, this therapist said, "Well she just has to be willing to cooperate or we can't help her". Ugh, the blame game started already, which is why dd hates therapists. They do not get her disability and end up blaming her rather than looking at what they are doing to make things worse! 

But, in the Bay Area, an evaluation with a private psychiatrist costs at least $450, with sessions thereafter costing from $200-$250. DD does not have insurance. She is 26 and can no longer be on my insurance. Medi-Cal (Medicaid) will not cover dd until January unless she is found to be disabled, for which she will need to see a psychiatrist, which she cannot see because she has no insurance. Ugh, Catch 22! I have to admit. I am seeing a new aspect of the country in which I live, one that is not complimentary. If one has money, one gets care. If one does not.... I feel like my head is about to explode. I have to cope with county social services, a horrible bureaucracy, which never answers the phone, will not let me talk with them anyway, and will not allow an advocate to come in with my daughter when she speaks with her case manager. Then there is the Dept of Rehab, a formidable organization, which also has hoops to navigate. I am daunted. BTW, I can only call these agencies during work hours, when I work, which means I am NOT doing my work. Then too, each time dd is required to go in for an appointment, I have to drive her, of course, during work time. She cannot drive; it is not safe. I feel so overwhelmed. DD is a full-time job right now.

I am worried about her. She has begun to talk about wanting to die. How do parents deal with all of the above. I find that I am beginning to spin my wheels. I did accomplish one thing. I found a psychiatric nurse practitioner who has agreed to see DD. The above nurse works in a private clinic with about 6 psychiatrists and then therapists. Her charge is $250 for a psychiatric evaluation and then $75 thereafter. I will do this. But, no, Jisp, I cannot afford, EKG and EEG tests on top of the above. And, I am scared re this, as FASD also is associated with physical birth defects, heart, liver, kidney, that often go undiagnosed because the whole disability itself is undiagnosed. AKA Alcohol Related Birth Defects (ARBD). DD will see a medical geneticist for a formal diagnosis re the FASD next month and I will ask this doc re any concern re other organ systems. The psychiatric nurse practitioner, though, said she has to learn about FASD and that she will do research on the above. What? A medical professional who actually recognizes the need to learn about FASD and wants to learn?? I cannot tell you how unusual this is, psychiatrists included. I have a FASD expert who has said she will do a consult with the NP, without charge. I have my fingers crossed. Individuals with a FASD typically have atypical reactions to medications. My dd is not exception, She became totally unresponsive to Prozac and hallucinated on Remeron. I am not expecting a panacea. There isn't one. But, would like to help my dd feel better and also be able to function better, so she can begin to take baby steps to building a life for herself. And, me? I need some respite as well as I feel under siege.

[bros]

Could you afford to pay for the sessions until insurance kicks in in January, then take off what you have paid for privately on taxes?

And, if you can, wait to medicate until the insurance kicks in?

Can't she get medicaid from her private diagnoses that you have paid for?

Also, get their statements that an advocate cannot come in with her in writing.

[michellea]

Hi empeg,
Your situation seems dire and difficult. I wish that I had the key to unlocking the services that your dd needs. I'm afraid until she is found eligible for them, your living situation will continue to be very stressful. I do worry for you and your own well being. If you are in an unsafe situation, if this impacts your ability to work, if your own physical and emotional health is harmed, it will be difficult for you to help either of your daughters. I pray relief comes your way quickly.

[dwolen]

I have had to deal with chaos in my home. It is not fun. Crazy with anxiety at one point, I started attending Al-Anon meetings, though the problem does not exactly fit. I should have gone this route years ago. But, I read a book about co-dependents years ago, and felt so stigmatized and depressed by the book, I could only find huge holes in the view point. I attended a Families Anonymous group back then, and was so bored, I wanted to scream. So, I wrote off the Al-Anon approach then.

However, in a desperate moment, I did end up going to Al-Anon. Although it is not a perfect fit, I did learn some useful things:
1. acknowledging that my life had become unmanageable.
2. the 3 C's: I did not cause this problem, I cannot control it, and I cannot cure it. There is a lot of talk about detachment in Al-Anon. It is really useful to concentrate on detachment. This type of detachment does not mean not caring, but creating some emotional space between oneself and the affected person.
3. The serenity prayer, so common it almost seems like a cliche, but it has a lot of truth to it.
4. Those with little or no religious faith in G-d turn their control over to the group as their "higher power," and do not spend much time worrying about the intellectual correctness of this. One needs a stress reliever, and if psychologically it works to think of oneself turning one's problems over to G-D, the group or something else, many of the Al-Anon members do this and thus feel less stress.
I find it helpful to read the Al-Anon literature, and listen to the stories of others. There are (mostly women) those who have lived with active alcoholics/drug addicts for years while participating in Al-Anon, but having relatively happy or content lives.

Studies of Al-Anon show that women who participate have less stress. This is what I hope for you, less perceived stress. You are doing everything you can do to help your dd. I am not suggesting you participate in Al-Anon, though if you do, you certainly have a case to do so, as you and your dd's lives have been affected by alcohol. But the 3 C's, repeating them like a mantra, has helped me lower my perceived stress and anxiety by several notches.

[empeg1]

Michellea, yes, I do need to take care of myself. So, I am going to take my dd to the private, psychiatric nurse practitioner, who, at least, has enough interest to want to read research on FASD and a small enough ego to recognize she is not omnipotent. It will cost me $250 for the evaluation and then more for additional sessions, $75. We simply can't wait. That and my dd will qualify for medicaid in January, but that means going through the county and a process that she can't navigate, a la the phone call, "She will just have to cooperate" nonsense and blame game. Truthfully, if my dd could navigate all the steps required by the county to access mental health care, she would't need the services in the first place. So, she will have to go private, period.

Al Anon, the idea of co-dependence that is a part of AA is a concept that has caused so much mischief for parents of adult children and teens. In fact, Dan Dubovsky, of SAMHSA and a FASD expert who lost his son to FASD, told me that the words co-dependence and enabling absolutely infuriates him. With FASD, it is not co-dependence but creating a safety net that is needed, that is unless one wants to find their loved one dead. Tough love does NOT work with FASD and, in fact, it is cruel. That and what is got me tied up in knots is not trying to cure my dd or control what has happened to her. It's the government agencies which are supposed to provide services that trigger the hell out of me. I know I can get them to respond, but it is the aggravation that the above requires and out and out anger that takes a toll. For instance, it took 3 1/2 months to get dd financial assistance to see the one physician in Northern California who can diagnosis a FASD, all that time, phone calls, letters, complaints, contacting my congressman, calling the state. I did it, but it takes so much out of me to do this and then know I have to move onto yet another recalcitrant agency, which will also drive me nuts.

I do have some support. I am part of a once a month parent support group for FASD; there I find parents who understand, without explanation. I was just venting what is happening and asking other parents how they have weathered such crises. I am glad Al Anon was of help to you, Dwolen.

[dihicks6]

One suggestion -- have you contacted any disability organizations to help advocate for her? I took my dd to one and she was assigned an advocate who went with her to social services and social security and no one batted an eye or said she couldn't be accompanied.

[empeg1]

Yes, Dihicks, I did. I spoke with advocates from both the DD community and mental health. The county in which I live does NOT allow anyone to accompany an individual to social services. I even spoke with the local NAMI and Disability Rights. The next county over has its own mental advocate, a clinical social worker, whose job it is to accompany any person with a mental illness when he/she interacts with social services. I spoke with that person too; she confirmed, my local county is awful.

[healthy11]

I don't have first-hand experience to offer specific suggestions, but I keep hoping that you will soon find appropriate support for both your daughter and yourself. Did you ever get the final report results/recommendations from the evaluation that the FASD expert did?

[jisp]

Empeg I am so sorry you are going through this. As you know if countries could be rated by how they treat and manage those with mental illness the US would get an F. And we repeatedly seem to be paying the price for it. The mass shootings get press coverage but every day there are many like your daughter who fall through the cracks and whose families struggle to just get them the most basic of care. It is crazy. We would never think of denying somebody with cancer basic care and yet we do this all the time with those who have mental illness.

Living with somebody, especially a young adult, who is mentally ill and not stable is exhausting. It can where even the sanest person down. As you know if you feel she is a danger to herself or to others you can always use the ER. It will not solve the problem. It will just be a short term solution. But at least it would give you a short term break.

All I can do is pass along hugs. I hope the psychiatric nurse practitioner can help you.

BTW, I knew one mother who was able to get funding to pay extra medical bills from her local rotary (Lions) club. I never would have thought about approaching them, but she did and was able to apply and get some money.

[dihicks6]

"The county in which I live does NOT allow anyone to accompany an individual to social services. I even spoke with the local NAMI and Disability Rights. "

Isn't this discrimination based on disability? Do you have any written evals that give a dx? Check with a disability attorney.

[empeg1]

I will have a report from the neuropsychological evaluation in a few days. The above will definitely state mental health diagnoses. I am not sure what he will do with the diagnosis of a FASD, as the above involves medical diagnoses that must come from a M.D. My dd has an appointment for the above at Stanford on November 11th.

Yep, discrimination, just like it is discriminatory and a violation of the mental health parity act that in California, medicaid recipients (Medi-Cal) can have Blue Cross, Kaiser or the county provide their physical health care, but only the county mental health program can provide mental health care. That means a pediatrician or internist at Kaiser can have a Medi-Cal patient with serious mental health problems but the doc cannot contact Kaiser psychiatry to coordinate care of the patient, as with all other Kaiser patients. Instead, with a Medi-Cal patient this physician has to call the overburdened county mental health facilities and wait for a return call. I heard from my own internist, who is the chief of medicine for Ease Bay Kaiser, that the above system greatly hampers her care of Medi-Cal patients who have mental health difficulties.

@#@#

[bros]

That makes so sense.

My NJ Medicaid covers all aspects of healthcare - behavioral health to dental

[empeg1]

bros, individuals who have Medi-Cal (Medicaid) do have coverage for mental and physical health..... But, in California, one can choose 1 of 3 insurance carriers for physical medicine, county, Kaiser and Blue Cross, but Blue Cross and Kaiser cannot be the carrier for mental health. One must go only to the county for mental health treatment. So a person can go to Kaiser to see an internist, surgeon, orthopedic specialist, etc. but if one needs to see a therapist or psychiatrist, one cannot see a Kaiser psychiatrist or therapist. One must go out of the system and go only to the county. Individuals who have Kaiser insurance not Medi-Cal go to any doctor, psychiatrist included, at Kaiser. Ditto is Blue Cross is your choice for a carrier if you are on Medi-Cal; you can use Blue Cross only for physical medicine and you must go to the county only for mental health.

[beth]

And this makes so much sense. Not that you don't already know that...

Clearly someone(s) think that mental health is not as important as physical health.

I wish I had a wand and could make it all different. It must be so difficult to know what needs to be done and keep hitting brick walls.

[bros]

Oct 13, 2013 19:06:09 GMT -5 empeg1 said:

bros, individuals who have Medi-Cal (Medicaid) do have coverage for mental and physical health..... But, in California, one can choose 1 of 3 insurance carriers for physical medicine, county, Kaiser and Blue Cross, but Blue Cross and Kaiser cannot be the carrier for mental health. One must go only to the county for mental health treatment. So a person can go to Kaiser to see an internist, surgeon, orthopedic specialist, etc. but if one needs to see a therapist or psychiatrist, one cannot see a Kaiser psychiatrist or therapist. One must go out of the system and go only to the county. Individuals who have Kaiser insurance not Medi-Cal go to any doctor, psychiatrist included, at Kaiser. Ditto is Blue Cross is your choice for a carrier if you are on Medi-Cal; you can use Blue Cross only for physical medicine and you must go to the county only for mental health.

That's so weird.

NJ Medicaid covers everything under one plan

[kewpie]

This may not seem like much but if you can borrow the book, Far from the Tree by Andrew Solomon, It has a great chapter on dealing with schizophrenic offspring. It may not may you feel so alone. Out of all the chapters on different disabilities, I found mental illness the most profoundly difficult to deal with.

[empeg1]

Thank you, Kewpie. Luckily, I will be attending a meeting of NOFAS Northern California and a parent support group of other parents who have children with these disabilities this Sunday. One way I am trying to keep my own sanity is through channeling my own anger (not at my daughter) into advocacy. I am furious that parents who have kids with a FASD must struggle alone, with no services, schools that have no clue, physicians who know nothing of the disabilities and are arrogant enough not to want to know, no help for adults, and jail as the placement of choice for young adults, all because of the above. I don't deal well with feeling helpless; hence, working to bring about change is a way that I cope.