Family and Caregiver Schizophrenia Discussion Forum

NEED HELP for my daughter and my sanity!


#1

My now 18 yr old daughter has been diagnosed with PTSD, Bipolar, anxiety, depression & schizophrenia. I am starting to come to terms with it as best I can, but am just beside myself, how my daughter, who was captain of the cheer team, class president for 3 yrs, honor roll, national honor society and has worked since she was 13 (sometimes 3 jobs in the summer) has now become a shell of her former self. I see a very grim future for her and it is beyond sad. With 2 failed suicide attempts in the past year and several hospitalization in the past few months, I am emotional & physically exhausted. Not to mention going broke with the doctor bills and medication. I have good private medical insurance, or so I thought, but everything is adding up and taken a toll, and we are only a year into it. The doctors keep telling me this is just a beginning or a very long road ahead. I don’t know how to keep pushing with such a small chance of ever getting my daughter fully back. It is taking a toll on my marriage, family, job & my 6 year old son, who has seen his sister try to kill herself.
This medical field is a joke. They keep pushing her out of the hospitals, and put her into a partial hospitalization program (as this is her senior year) but within weeks, she’s back in the hospital. For them to “up” her med dosage, and send her on her merry way. I am beside myself. I feel like I am 1 person fighting with the insurance companies, hospitals, doctors, I feel like I am in the middle of a crowded room, screaming, and no one hears me. I don’t know how to push the government to get more help with mental illness. Everyone suggestion to me is get her on Medicaid, which apparently is the way to go, but I do not want her to be another person “living off the government” I do not understand why I pay medical insurance, and work, not to be able to get the care that my child needs because I am not on government assistance. I do not even know how to go about it, if that is what I have to do. I am waiting on some case manager to be assigned to my daughter, but it’s a daily struggle, following up with everyone to make sure everyone is doing their job. And everyone blames everyone else as to why I am not getting answers or help. I can’t even tell you how beyond frustrated I am.


#2

Hi,I’m really sorry to hear what you are going through. I can relate a lot because I’m 17 and Ive been partially hospitalized too.Being diagnosed with severe depression with phycosis and GAD. I really feel for you and your daughter. It reminds me of me and my mom. I hope you find help with your situation.


#3

Thank you. My daughter and I are so very close, that it is extremely hurtful and upsetting that I cannot make this go away. Throughout her life, I was able to solve all problems, and this is the 1 thing that I can’t. I can’t even get the doctors, hospitals insurance companies to do their jobs, and I feel like I am fighting a never ending battle, with people who just look at my daughter as “another patient” and not my daughter.


#4

I just wondered if you could get her some care in the community where nurses can come to visit her and offer support maybe take her out and talk about medications


#5

Apparently all these services that are offered, this is what the case manager does. But it is like pulling teeth trying to get this case manager. The last time, partial was working on it, she ended up back in the hospital, then they had to start all over again. Yesterday, my daughter was “talking” to game pieces and stacking chairs upside down, it seems like she may be heading back to the hospital, which will now delay it even further. I don’t know what else to do, as everyone keeps telling me “they are working on it” but I do not see anything happening.


#6

I usually don’t post in the family sections, but this caught my eye- I was in pretty bad condition just few years ago. I was not hospitalized for more than one night, but I was pretty bad, I was drunk or high all of the time and psychotic, a senior in high school. I somehow toughed it out and did fairly well in school, I graduated and went on to college and made a 3.5 my first year. I was not okay. I was legally insane until February 4th of 2013, that was the day I was diagnosed and given a firm talk about what was wrong with me.

I snapped at one point, I was one of those kids who wanted to be in the military, and I had been trained in Krav Maga (Israeli hand to hand combat) as a teen and they sent seven cops to take me to a crisis assessment center, where I stayed awake super drunk all night.

I was abusing the hell out of alcohol, smoking cigarettes (still do that) and had been smoking pot but quit that in favor of alcohol because pot made me hallucinate more and alcohol helped the hallucinations go away.

I had no clue what was wrong with me. Now I am preparing for the GRE for clinical psychology programs.

So there is hope, there are so many medications, she can learn about what is wrong with her and how to live with it, it doesn’t have to be just hell.

Her story is not over yet. There are many blank pages to be filled.


#7

Thank you for sharing. I appreciate it !!!
I hope there is a happy ending. But like you, she started with the drugs and cigarettes. I smoke cigarettes myself, but obviously want better for my kids. I just know, especially with the issues she has, that she may experiment with more drugs, chasing that high of not hearing and seeing these delusions anymore. It is a very scary situation, and where my focus use to be looking at colleges with her and help plan her future, the focus is now keeping my daughter alive. Which seems to be a daily struggle. Luckily, she has a very good, and very tolerate boyfriend, but I can’t expect him, at 19, to tolerate as much as he does, for the rest of his life. He does take some weight off my shoulders, so I don’t carry this by myself, but he is just a kid himself. I wish there was more help out there and that the government was not so ignorant, or quick to sweep mental illness under the rug. Especially people who look for help and want the help.


#8

Regarding insurance - don’t rush into dropping the private insurance, but you can have Medicaid as a secondary. There are some services - such as case management - that are only available for people on Medicaid. To get the most comprehensive services, have 2 insurances for her as long as possible. That in itself can be a hassle, but it has been worth it for us. We have a much greater choice of doctors and psychiatrists with the private insurance, but Medicaid can help in getting other services.

Regarding diagnoses - I am not a doctor, but it sure seems like a long list of diagnoses!


#9

Yes. Tell me about it. It is a laundry list of diagnosis. We have seen more than 10 different doctors, between hospital stays and regular therapists, plus at her current partial hospitalization now, and they all seem to agree, which is usually unheard of that so many agree with each other’s diagnosis.
We currently have 2 insurances for her. I have MVP and her father has Empire. They only let me use the primary (MVP). Then we submit the balance of the bills to Empire, and Empire will not pay because they will not pick up other insurances co-pays. It’s a vicious cycle of back and forth and the end result is always Empire paying nothing because they are not primary. It is utterly ridiculous, and a lot of wasted time and energy when I can be focusing on my daughters help and her needs, along with my 6 year old who has probably felt a little neglected since this fiasco has all started.

I tried getting her into another hospital during one of her many hospital stays. Unfortunately they would not take MVP, but they did take Empire, but would not take her father’s Empire because it was not primary.
needs, along with my 6 year old who has probaly felt a little neglected since this fiasco has all started.


#10

Sorry and welcome.
It is definitely a merry-go-round.
if she is getting a case manager-that is good news. This person is supposed to help with Medicare-Medicaid-help stet upappointments
to see doctors, SSI/SSDI if needed.
I would bug the !@# out of them to rush this process.
Sometimes finding your way through the mental health system is just as bad as the illness itself!
Have you been in touch with NAMI in your area? You will need all the support you can get!
I know your girl needs a lot of help-but dont leave your son out. The only reason I say this is because I have 2 younger girls myself who felt very much neglected. I didnt have any help or support-just me-and it took everything I had. You are lucky that you have a husband and your daughter`s boyfriend there to help out.
Hang tough-it gets better!


#11

Welcome to the forum @Alexis1224

First try to take some me-time for yourself. This is advise I have to remind myself of sometimes. It’s easy to get overloaded with taking care of everything and making sure that everyone is doing things correctly. I remind myself that these professionals are only human too however it gets frustrating when I’m helping them fill out forms, correcting their mistakes, telling them how different systems work and asking the questions that no one else seems to be thinking of. Some days I just want to be mom!

Some links for you:

http://forum.schizophrenia.com/t/the-caregiver-space/10783

http://forum.schizophrenia.com/t/a-thread-for-care-giving-tips-pics-quotes-and-or-phrases-welcome/2191

http://forum.schizophrenia.com/t/hope-for-families-treatment-before-tragedy/9301

http://forum.schizophrenia.com/t/understanding-schizophrenia-a-facebook-page/2098

http://forum.schizophrenia.com/t/grieving-mental-illness-the-mental-illness-education-project-inc/2748

I would recommend trying to get your daughter on Medicaid and SSI/SSDI. The strain of being mother, nurse and everything else doesn’t need to have the added pressure of bank if it can be avoided. These services are there for her so use them if you can. I’m currently in the second round of supporting my son out of pocket and the added pressure that it puts on our finances is making things tougher to deal with.

I’m in Canada so I don’t know much about Medicaid and SSI/SSDI but these links may help:

http://www.disabilitybenefitscenter.org/

http://www.ssa.gov/disabilityssi/

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Eligibility/Eligibility.html

The lady who runs the above Facebook page I linked: Understanding Schizophrenia recently went through the process for her son and has learned a lot about the process and advocacy. She was hesitate about putting her son on it in the beginning. The relief that it can provide not only for you but for your child to not feel as much of a burden and to have some of their own financial freedom can go a long ways.

I have to remind myself and sometimes others have to remind me, to take care of me. Find time for a bath and a good book. Time to recharge your mental batteries. It is a roller coaster ride and most of the times it seems to be an up-hill one.


#12

ACT or PACT may also help take some of the pressure off you in helping your daughter.

http://www.nami.org/Template.cfm?Section=ACT-TA_Center

How is your daughter doing?


#13

I truley feel for you, and to go through this by yourself, I can not even begin to imagine.
I feel like I am just constantly fighting with everyone. The hospitals to keep her in longer, the insurance, to pay what they are supposed to, the therapists, to get her meds regulated. I feel like I can’t even have time with my son, unless I have someone there to “watch” my daughter. I try to get her to go and do things as a family, but she is so tired and sluggish from her meds, sometimes I cannot even get her out of bed. She has gained over 30lbs in the past year, which I know is going to be the next issue come warmer months. I did contact a few support groups by us, and one starts in March. I will be planning on going there. Her father and I are both remarried, but the issue is no one truly understands what is going on with her, myself included. My husband is just very quiet and stand offish, and just throws himself into his work, so not only is he no help to me, but I get no down time. Her father and step mother, try to be supportive, but from a distance. When she’s manic, they tend to try to help a little, but after that, it’s back to their own lives until the next manic episode. I am going to try to do the movies tonight with my son. Hopefully there are no issues, but it always seems to be something lately.


#14

Thank you so much for all this information!!! I appreciate it.
I’m in NY, and people here tend to not be the friendliest. So it’s just a bunch of people pushing and blaming their responsibilities onto others and so on and so on.
They just “up” my daughters meds again. To me, she seems a little happier on these drugs now that they switched them about a month or so ago, but she is more tired, and just recently started talking to a game piece. She also was in her partial hospitalization program this week and began to tip chairs over and stack them, but when it was bought to her attention she was not sure why she was doing it and didn’t realize she was. Also with my daughter, she is not very forth coming when things start happening. She does not want to go back to the hospital. She just turned 18 on Christmas eve, and she was released from the hospital 2 days before her 18th birthday from the adolescent wing. So next hospital visit will be the adult ward somewhere, and she is extremely afraid of that. I had to take her car away because I am afraid something may happen with her driving. She has been pulled over a ridiculous amounts of time, but thank fully only received just a few tickets, which is better than what she could have received. She feels like she is being punished because she is sick, but that’s not it, I want her safe, and I do not think she gets that.


#15

Sometimes the meds can make them feel sedated until they get used to them. As far as meds go, its trial and error. My son has always been the same way--never talking about the illness. I just want to tell you that if she has to go to the hospital again-get her to sign a release form so the doctors or nurses can talk to you. Once she is 18, she has the legal right to refuse info. to anyone. This has been a real bone of contention for me over the years. One thing Ive learned in hindsight : pick your battles-I fought everyone along the way until a nurse said to me one time, " Are you in any kind of therapy for yourself?" I was a ranting and raving mother!
Dont let this happen to you. Some things cant be changed. I wish you luck. This site is a very good place to come and talk. Bless you


#16

Thank you. I keep hearing that myself “are YOU in therapy” . I wish I had time for myself to be in therapy, or to just get a good nights sleep. Both are very hard to come by these days. I havent slept in my own bed in months. My husband is nervous with my son being around my daughter, as she sometimes does things and doesn’t even realize it. Nothing violent, but I guess he doesn’t want to take that chance. I have been sleeping in her bottom part of her trundle bed, which is not the most confortable place to sleep. So far, she seems pretty good with letting me speak with the doctors now that she is 18. She actually agrred to letting her father and I put a GPS on her car, just in case. I have heard a few stories where some people have gotten disorented, not not known where they were or where they were going. Just a matter of keep her alive and well.


#17

I believe meds. do more harm than good. Just loving your daughter and talking and listening to her will do more for here than any pill.


#18

Honestly, I thought the same thing. I do not even like taking headache medicine unless I absolutely have too. I do not like the “medicine head” feeling. I tried to fight as long as I could with the docs about giving medicine, I tried doing all natural things, vitamins, acupuncture, ect, but nothing worked. Once my daughter was on her meds, she said she felt like she can think clearly now. Its not 100 % my daughter, but she saw the difference with and without meds, and she said she feels much better on them.


#19

Do you mind if I askin for your help. What are some of the symptoms your teenager has. I have a 16th son that I need help with and like you I am having issues with the hospitals not helping or understanding what I deal with because when he is there he is a total different person but at home he is totally fine til he doesn’t get his way. Abuse, mind manipulation, self harming, loss of reality, and much more. I feel he is possibly showing early signs of sz


#20

Sorry for the delay. She started by having a break down. It was until then did I realize the the child I knew, the happy go lucky kid, was having so many issues. She was hearing and seeing things. She has been in and out of the hospital 3 times since November. They have changed and upped her meds so many times I lost track. She wasn’t really violent or aggressive toward the family until recently. She was though aggressive towards her friends, and very nasty. This past week she kicked her 6 yr old brother in the stomach (in the past she would tell at him at times, but never touched him, he is slightly autistic and she knew she needed to have a lot of patience with him) and I yelled at her. Even her boyfriend said something to her. Then it all went down hill from there. A little while later she flipped out on her boyfriend out of the blue over nothing. He kept his cool, and she kept going. Then she went from screaming to hysterical crying, for almost and hour. To the point where she got sick and started to hyperventilate. Then she started to hit herself in the head, then finally when we somewhat calmed her down, she wanted to talk to my husband about what’s bothering her. ( which is very unusual) what my daughter told him frightened me to the core. She said her voices were telling her to hurt me and she knows she doesn’t want to, but their so loud and they won’t stop. I felt like I was in a lifetime movie and that I was watching someone else’s life. Because my daughter and I are very close, and I am the only one who has been with her through all of this 100%. Our local crisis hotline told us to bring her to our local hospital, but now that she is 18, our local hospitals adult ward is filled with 30,40,&50 year old men with mental illness. When she was under 18, her father or I could stay with her, but she just turned 18 in December, and it’s a whole other world. Once we completely calmed her down, her boyfriend stayed with her until he had to go to work and then my dad did. My husband,myself and my son were locked in my room for the night. Unfortunately there is very limited help. If they are not exhibiting signs when someone sees her, they deem her sane. And my daughter is not very forthcoming when something is going on. She tries to hold it all in until she explodes. I tell the doctors this, but they said they can’t treat her unless they see behavior for themselves or she tells them. The whole mental health issue, is so completely looked over and it’s very sad. This is why a lot of bad things happen in society because the ill are just over looked and passed over, and rushed too soon out of hospitals, that they do not get the help they so desperately need. Lucky for our kids, we are their advocates. A lot of people don’t have that.